I think what rssonted most were her symptoms and how myeloma can present itself in different ways. My story is very different from what other myeloma patients report in their interviews. Take care!!! Randy mcran.com
@@rmcellig brave lady hope you going to be ok great thing is you have a family to help you I have lung cancer and live in Guernsey channel Islands and we don't get no answers I have one son who helps me and it horrible because they say the cancer took my voice away from me but I don't believe that cancer took my voice away just wish I no someone who did
@@traciearcher8759 hi Tracie!! Is your treatment working for you? I'm in a phase 1 trial. The only one of its kind in Canada. After 5 weeks of treatment, I found out last week from my hematologist that I am in full remission again. Hopefully it will last longer than the last treatment. I hope you are getting excellent treatment and support!!!
@@rmcellig I had the coronavirus and then I got stage four non-small cell lung cancer advanced, and it was caused by this reason , Deuteronomy 28:43 to 44 , and it’s spread to the entire entire world and killed the world
Googling is actually not the worst thing you can do. It has saved peoples lives when doctors didn’t have the time to do the research. I’m so sorry for how you found out. The Covid restrictions have caused trauma to so many. We will be dealing with that fallout for years to come.
Yes we will, so many lost lives!!! I had thought that the world was ending when the pandemic started!!! Dark times, I had to STOP watching the news all together!!!
That's how I found out I have a disease named Scleroderma (Limited) because doctors were always being dismissive. I Google my symptoms and found out that disease. The antibody came back positive and still the awful doctors ignored me. 😢 I could have had the diagnosis since years ago but they never took me seriously. I'm struggling with my health a lot because doctors had a stupid pretext for my symptoms. I have something else than only scleroderma and I'm trying again to figure it out by myself. Plus the damage that tye disease has already caused me. I'm in Germany. (In Mexico doctors ignored me too but here in Germany were horrible too). 😢 It's funny when doctors tell you "don't Google" because internet is not right. Funny! Because thanks google I found out what I really have. 😤
When I went to “Urgent Care” because of extreme pain on the left side of my ribs, the doctors on duty told me they could find nothing wrong with me. I continued to have this pain and ended up going back and forth to urgent care at least 4 times in 1 week. The last doctor 😂to examine me came into the exam room telling me that I was a hypochondriac and that they were tired of me wasting their time and that I would not be seen anymore and not to come back. I called my daughter and told her of my pain. She took me to the Emergency Room at Denver Health. I was admitted into the hospital, was there for about 3 weeks when they finally diagnosed me with Multi Myeloma. I am going on 5 years s of treatment and will be on this treatment for the rest of my life. 😊
Dear Dolores. Can you tell me how your rib hurt. I live in UK. I have MGUS for 8 months I have a rib pain the worst is when laying down and sitting. The Doctors send me only for a cheat x-ray here. I done privately an abdominal ultrasound and colonoscopy. The pain is in around my back rib. Thinking of doing more tests privately as they do not want to send me in the hospital. Can you tell me if your pain was constant? Mine started like a sharp pain out of the blue. And is with me since February.
@@agnieszka.82my husband had the rib pain and that’s how he got diagnosed with MM. he actually had a broken rib from coughing so hard. He had a sharp pain this past week, went to the ER and they did blood tests and a CT scan. The scan revealed to small nodules. A biopsy via bronchoscopy showed non malignant and blood test results were normal. Next step is a PET scan to make certain. Hope that helps.
I cannot belief how often it is that patients are turned away, suggesting they’re hypochondriacs to later find out that they are deathly ill. This is a disgrace and people should be sued for this.
I will continue praying for you. I cried when I watched your story because I am dealing with the same thing. I am very scared now and I'm not so sure what the future holds for me anymore. I pray that God will give me the strength and courage to fight this cancer. I also have Bronchiectasis and it's making me very tired and exhausted at the end of the day. God help us all! Thank you for sharing your story. May God bless you.
My late husband was diagnosed with MM in 2008. He was treated at Siteman Cancer Center in St. Louis. He was 71 at the time he was diagnosed and at that time they didn't recommend stem cell transplants for patients over 70. He treated for 5 years before passing away 8/16/2013. But, I'm sure it was a difference in the treatment, but didn't lose any hair. I enjoyed watching these videos, seeing that things are improving in treatment for MM.
A client had her own stem cells used at cedars Sinai and remission for 25 years. She’s 80 now. Swims two hrs every day, weights and stretch classes every single day
I love hearing that there is someone in remission for 25 years and had a stem cell transplant using her own stem cells.. I am in remission 10 years. I had a stem cell transplant using my own stem cells. I was given 5-10 years to live.. My doctors are so happy and consider me a miracle.. This story gives me so much hope
@@Draslidell that is incredible!!! That has brightened my day! I lost my oldest brother to stage 4 lung cancer that was caught WAY too late. He was diagnosed in late July and was gone in October.
My mom was diagnosed with multiple myeloma at 72 and because she was pretty healthy prior to the diagnosis and an only child without she was able to have an autologous bone marrow transplant. That diagnosis was almost 10 years ago and thankfully she's still here and doing pretty well ❤❤❤❤
What a stunningly beautiful lady. I listened in awe to her story and she is totally amazing. On my 2nd bout of breast cancer and its a horrible time, but this lady so humbled me and I wish her the very best. She so deserves something good x
I was diagnosed with MGUS early 2020. I thought I was there about high blood pressure or something related to my heart. I was stunned when the internist explained it is a precursor to potential myeloma. He followed that up with here are more tests we are going to do. A friend had passed from MM shortly before this. I was scared sh#@less, Bone biopsy, full skeletal review, and blood tests (every six months, the blood tests) with no idea if nor when everything may go sideways, it's hard. I try not to focus on it, except when waiting for blood results, but it's always in the back of my mind. Every ache pain or whatever leads to that question, "is this the symptom I am supposed to watch for." My heart goes out to anyone dealing with MGUS or MM.
Share the below information with your Doctor I too am positive for M Protein in both my blood and urine. I have been taking from 500 up to 1000 mg a day now for two years and so far my blood still looks good with no anemia. Keep the faith “The flavonoid quercetin has shown anti-tumor effects against a variety of solid tumors. However, its effects on multiple myeloma (MM) remain unclear. In this study we examined the proliferation of human myeloma cell lines U266, KM3 and RPMI8226 and MM derived cells from four patients with MM after quercetin treatment, and detected the expression of IQ motif-containing GTPase activating protein 1 (IQGAP1), a scaffold protein involved in mitogen-activated protein kinase (MAPK) signaling, by reverse transcription-polymerase chain reaction (RT-PCR) and Western blot analysis. We found that quercetin inhibited the proliferation of MM cells in a dose- and time-dependent manner, accompanied by reduced IQGAP1 expression at mRNA and protein levels, and reduced extracellular signal-regulated kinase 1/2 (ERK1/2) activation. Furthermore, we found that quercetin inhibited the interaction between IQGAP1 and ERK1/2 in RPMI8226 cells. In summary, our results suggest that quercetin suppresses the proliferation of MM cells by down-regulating IQGAP1 expression and ERK activation, and has potential as a novel agent to target oncogenic kinase cascades for MM therapy. Keywords: IQ motif-containing GTPase activating protein 1; MAP kinase pathway; Quercetin; multiple myeloma. Best of luck. Cheers
I have MGUS and have been doing the blood tests and X-rays for about 8 years. So far, no MM and I just had my meeting with my hematologist today. I’m fine. Again! I hope you continue to be ok.
Same here. I got bumped now to yearly bloodwork. Last time he said that I shouldn’t lose sleep over it and if it turned out I did have it, it would be very early stage. However it’s bad enough I have depression and anxiety and the month leading to this oncologist visit is horrible. Apparently my levels slightly elevated he said people who have uncontrolled allergies, sometimes their levels are elevated, yet these yearly bloodwork’s are for monitoring. He also told me my levels may always stay like this.
Cancer misdiagnoses always remind me of when I had a stalker. The police told me it was likely someone I worked with. After 2 years it turned out he had 29 victims, all in one area, all customer service workers, all reported it. Apparently the police don't speak to each other about cases, even in the same unit.
@HeraclitusThoughtBubbles you have to change everything you eat totally little by little to rule out the culprit and to eradicate the illness. Do you take probiotics 1 st thing in the morning on empty stomach, 2) make green tea with no sugars if you need just add a tsp of honey, and you can add cloves and garlic for immunity 3) do you exercise even if you just walk as fast as you can for circulation.. no, pop, no artificial juices, little meat like can fit in the palm of your hand.(Salmon , baked chicken baked sweet potatoes etc, only olive oil for foods .Drink plenty of water and like a gallon a day and no junk food or processing. Eat at home much as possible and 1st you need to consult with God our holy creater and ask him to give you wisdom in your health in Jesus name because Drs are not God just agents of the health system who mostly doesn't believe in God or herbs. I been curing myself forever. It took Drs 39 years to say I had annorexia and they still don't know what was the cause. Some of these DR s shouldn't be Drs period
I am so sorry you went through everything to get the final answer. Sending you understanding thoughts and well wishing vibes! I was diagnosed with multiple myeloma Jan 16/23.
I do not know how the heck I got this video, but I really loved that interview and her story. On Jun 28,2021, I walked into the hospital with TIA symptoms and huge fresh bruises on the lower part of my abdomen. Three months prior, I had been very tired, had huge bruises in odd places an never remembered getting hurt. My thought was to retire from a 43 year nursing career. I was admitted into the hospital thru the ER 15 min after my arrival. A normal platelet count is 158 and above. Mine was 6. A hematologist did a bone marrow biopsy the following day after having blood and platelet transfusions. The CT scan showed that I had a stroke. The bleed in my brain was caused by APL leukemia. We both have a different type of blood cancer, however the despair we felt was the same. Even telling my daughter was a matter of fact of life while she was crying on the phone. I almost died thru both of my chemo treatments while in the hospital. All of my body conditioning left me incontinent an unable to turn onto my side or lift my bottom up. By March, progress started happening and July1 2022, I left the rehab facility for home. It it weren’t for my husband updating social media and the church network, I do not know where I would be today. Thank you so much for sharing!
Wow. I am so glad to hear that you were able to return home and that you have great support around you! I would love to learn more about you and if you want to share your story, please write me directly - stephanie@thepatientstory.com. Big hugs to you!
Ive been extermely fatigued since January of this year..I explained this to my doctor in March..she just blew it off as stress...I just had my annual phyiscal this past week...Again I explained feeling like I was anemic and I had hip pain...however she said my bloodwork doesn't look like Im anemic...I go in for a bone density test next month because I have been diagnosed with osteoporosis 2 years sgo....I'll be 69 on the 23rd and I feel that the doctor is just blowing me off because of my age and the fact that I still work....
Also please check on your calcium level. My mom have multiple myeloma and was extremely fatigued for 3weeks where she could only sleep and rest 22hrs a day. She also had some memory loss and lost sense of time and aching bones, especially both her arms. Got her to the ER and blood test revealed a very high calcium level in the body (due to the cancer ) and was admitted. She is currently in the hospital, and the doctors are putting her on a drip and focussing on getting her calcium levels down. Hopefully she can get better once those calcium levels go down to normal level. So yes, for those suffering from extreme fatique and aching bones, one thing to check for when you go to the hospital is to have your calcium level checked as well. Blessings! 🙏
I’ve been having fatigue everyday for 2 years straight & had a major unexpected 25lbs weight loss. Blood work comes back normal. It’s been so hard fighting to get seen If nothing is found at the end of the month. My dr is finally referring me to a oncologist
My brother was feeling very tired and felt like he was fighting something. He went to the ER at one point and was sent home. The next day he was worse and ended up passing out and an ambulance had to be called. They finally determined at the time he had sepsis and he ended up in a coma. We didn’t know if he would survive or not and they proceeded to run test after test, and searched for answers and did more tests . He ended up on life support and eventually was diagnosed with multiple myeloma. He was also very anemic. His family was approached about taking him off of life support. At some point he woke up when he heard the kids in the hospital room and was eventually able to be taken off of life support. It was a long struggle with him trying to learn to walk again, he’d lost a lot of weight, and they did more tests while they tried to decide if they could do any treatments. He was moved between two different hospitals but at that point was pretty much in a wheelchair. He left the hospital for a few day trips but was basically in there 8 months, as he continued to grow worse and family was told he was palliative. He survived only another day and passed away that night in the hospital. Obviously he was diagnosed too late and only survived 8 months in hospital and moths prior to that without a diagnosis or any treatment. I understand some people can survive for years after but only when they continue to seek a diagnosis and help a person. Sad ….
Donna....I'm so very sorry for you and your brother...it truely renders my heart. The medical profession isnt perfect , to be sure. My main frustration is that in so many cases....early detection was skipped over....by the time a correct diagnosis is discovered....its far too late for recovery. Our adult son died 2 years ago. The knowledge of "what could have been" had he been taken seriously adds to the grieving and heartbreak for my husband and myself. For all of us, I quote a prayer......"May you find peace....May your heart remain open...May you heal"
@@ReclinerBabe thanks for your caring Sandra. I can’t imagine how hard it was to lose your son to this disease. It seems to be something that isn’t always picked up and the symptoms seem to be so varied, and often they pick the easiest diagnosis from the symptoms. I suppose even the patients themselves aren’t really sure what all their symptoms are by the time they aren’t feeling very good. With my brother he ended up having problems with his kidneys and after being sent home once, he developed sepsis which added another issue to things. From the time he first went to hospital till he passed was only 7 months.
@@donnamatheson3021 Sandy here. I've only just now been advised of your reply to my comments. I didnt mention before that my son, Jeff, took 2 miserable years to die....was first on palliative care for 1 year..then on hospice for anotherr. Modern medicine kept him alive... only to suffer longer. What a position to be in....to wish for your kid to stay and also to die at the same time! A true Mothers delimna. My husband and I are 90 years old....never meant to outlive my 2 grown kids. My daughter in palliative care right now with bone cancer. I doubt we will handle losing her any better. It's not something you get better at with experience. I share this with you because few others understand what this is like. Sending you love and light. Oh, and thanks for your reply....you said it all so well. Maybe someone will benefit from our sharing.
@@ReclinerBabe Hi Sandy, thank you for your response. I’m so very sorry to hear that you lost your son Jeff, and now your daughter is also palliative with cancer. I can only imagine the terrible loss you are dealing with. We always hope that we will be the ones to go before our children, but unfortunately that isn’t always the case. You’ve lived beyond what so many others do, especially to get into your 90’s, and then to already lose your son and now having your daughter ill. It must be heartbreaking for you both. I can only imagine what that feels like especially as I’ve had close friends who have lost children of different ages and I know it’s something they don’t seem to get over. Losing my only sibling was difficult as well, as I’d already lost my parents. , and I’ve also watched my aunt and uncle go through similar loss as you. They lost their middle son to cancer, and only a few years ago their youngest died of heart disease, and they are in their early 90’s. It’s hard to understand why we must deal with such losses in our lives; It’s not easy! I only hope you can find peace in your loss as you go through it together, and that you find comfort in the memories you both share. I know it’s not easy. Thinking of you especially at this time and sending love & hugs to you. If you ever want to chat, please email me. d.matheson@rogers.com 💕🙏🥰🤗
My friend passed away in March 2022 of acute leukemia, she had symptoms 2 years before diagnosis, first being sore legs, had 2 surgeries on tendons, that weren't successful, then loss of hair, lesions on her head, put down as a scalp condition, confusion, hallucinations, 4 1/2 hour trip to the phyatric unit in northern suburbs Perth Western Australia, then came the diagnoses acute leukemia, with the earlier symptoms, it wasn't so acute, years before she'd had cancer & was treated with chemo, that treatment can cause blood cancer, with her medical history I would have thought more attention would have been looked at her earlier symptoms...
All these different specialty areas show that the left hand doesn't know what the right hand is doing... Doctors need to take a step back a piece the puzzle together using critical thinking rather than the process of elimination. Between "testing" and the drug companies, patients are falling through the cracks while continuing to suffer or die needlessly. I have many, many stories of doctors discounting, gaslighting, pooh-poohing and outright bullying patients into shutting up and going away
For those suffering from cancer, and multiple myleoma, if at anytime you are suffering from extreme fatique and bone ache, a good start when you are seeing the doctor is to have your calcium level checked. My mom have multiple myleoma, and recently was suffering from extreme fatiqued and bone aches, especially both her upper arms. After three weeks, we finally got her to ER, and blood test revealed high calcium levels in the body. I think its called hypercalsemia or something... She is currently in the hospital (day 3) and hopefully once her excess calcium is treated, she will be able to regain some strength and stop being so fariqued. Blessings 🙏
Thank you for this information and glad to hear your mom is feeling a little better. My mom recently was admitted due to suspected MM and they said she does have elevated calcium. She is in extreme pain😞
@@mijumaru97 🙏prayers for all and hope your mom gets well soon. It took about 4-5 days to get the calcium lvl down to normal range for my mom. She's feeling better now. 🙏
Sometimes it’s hypocalcemia. My husband had very low calcium with his multiple myeloma. The first red flags were low iron level and exhaustion. This continued for a tear before Dr investigated with a CT scan which revealed severa bone lesions.
True, but any blood test will show as much as 18 different criteria consistent with myeloma, such as RBC, WBC,RDW,Platelets, Hemoglobin, A/G Ratio, Sodium, BUN, Creatine, Hemocrit, Calcium(as you mentioned), Protein, Absolute Monocytes, MCV, MCH, etc
Wow, thank you for this. I am currently in my 2nd bout with MM and this was the complete opposite from my story. Both times, I led off with bone pain (a broken vertebra my first time, shoulder pain the 2nd) and I never had any of the other CRAB symptoms. All the fatigue came later with the radiation treatments. Thank you for Marti's story. While so different than my story, it just goes to show we're all in this together.
Wow. I had definitely never heard of anyone having a reaction to Benadryl! That is definitely very scary. My dad was going through the process of potentially being diagnosed with MM when he died from traumatic injury as a result of a fall. Prior to that he had a long history of dizziness and fatigue and had all kinds of different diagnoses, none of which seemed entirely right. I’m glad you found a diagnosis and even better you have such a nice family to help in the support you need to go through this. It’s always important to have your troop and keep living life as best you can! Sending love, blessings and light!
Thank you for sharing your story. At the moment of writing I’m awaiting my PET scan results. Starting having night sweats several months ago. Blood tests revealed that I was anaemic. Was referred immediately to a haematologist who ordered a CT scan. The scan showed I had a single enlarged lymph node in my oesophagus. They can’t get to this lymph node very easily due to its position. Had my PET scan with a dose of radiation on Friday. Get my results in 6 days. Funny thing is the night sweats have gone and I feel fine. My biggest worry is the effect this will have on my loved ones. Especially my elderly mother if it turns out to be cancer. I’m so sorry you had to go what you went through before diagnosis. I feel very fortunate after hearing your story. Wishing you all the best. 🙏🏼
@@ThePatientStory Thank you so much Stephanie, I really appreciate your kind words. So glad I found your channel, it’s so refreshing and gives a great insight in to people’s experiences. Best wishes to you and everyone battling this or any other serious disease. 🙏🏼🙏🏼❤️
@@phwshopping1426 Hi, hope you're having a good day. So the PET-CT scan came back normal. The enlarged lymph node in my chest appears "benign" and the scan showed no other enlarged nodes or areas that would suggest malignancy. I have since had a bone marrow biopsy. I get my results on Monday. It's always there in the back of my head but i'm trying not to worry about it. I've been watching my go to feel good films and TV shows and eating comfort food. I guess I'll be very anxious on Monday, However in this limbo time period iv'e managed to tuck it to the back of my mind. Thank you so much for asking and will post the outcome when i get my results. wishing you all the best. chris.
@@phwshopping1426 latest update, bone biopsy was normal so the Haematologists are putting my symptoms and anaemia down to a bout of Covid I had just a few weeks before this started. (Not sure about that myself) However, night sweats are rare now and have more energy and back to work full time. Wishing you all the best and a blessed new year. 🙏🏼
I think the interviewer did a great job of exhibiting compassion and asking Marti specific questions that she knew the viewers would be interested in knowing the answers.
Meet a consulter as soon as possible . Try to have stem cell transplant .. that s the real treatment .. my experience is successful . Now I m not having medicine . My respect to the doctors ...Sri Lanka .
Thank you for this story. Many parts of this I can relate to. I've had major issues with anemia since last November. I was back and forth to urgent care and the ER a few times, along with tons of doctors' visits to see why I always felt so fatigued and just unwell. I was waking up panting for breath with my heart pounding out of my chest. My Hb was 7.7. I was borderline for a transfusion. I ended up with 4 iron infusions and tests to see where the bleeding was coming from. As I had been having a lot of pain and issues with my period (51 years old) and everything else looking good, I had a hysterectomy. Seemed it was the solution, but the anemia is coming back and my wbc count is really low. I'm also experiencing a ton of bone pain. I feel the frustration of going to and from doctors trying to figure out what's wrong and just wanting to feel better. Still looking for answers. God bless, and thank you!
Gigi, sounds like you've been through so much. Thinking of you as you figure things out - so glad you are getting the attention you deserve. ❤️ Stephanie
Seek out a womens clinic or an oncologist. Last year I was diagnosed with stage 4b ovarian cancer. I have had chemo, surgery and chemo again. My white and red cells are not regenerating so I can’t take much needed post chemo, chemo tablets to insure it doesn’t come back. Bone pain, fatigue and numerous other symptoms. I am extremely fatigued and can hardly walk. Do something and stay on their butts.
@@alaskansourdoughwormsgarde4392 from a fellow OC patient (luckier in stage but symptoms still missed by docs for many months), I totally endorse this message. Docs should look at the whole picture, not just treat a collection of individual weird symptoms.
I pray you get with a better doctor. They are few and far between these days. My sister has been doctoring for decades. You people are so strong! I couldn't do it.
Doing an IFE with M spike blood test is so simple, I don’t know why more Drs don’t order it for their patients with these obscure symptoms. It would answer so many questions so quickly.
I just had this blood test done December 5, 2023, waiting on the results now! Bone pain in back and skin sores out of the blue, infections, fatigue) I was negative for leukemia and lymphoma and my allergist suspects myeloma.
I would just like to share with you about me I'm from Guernsey channel Islands and we don't have cancer people who helps us over here o have lung cancer and I have been sick for a long time not at one point did anyone pick up on any systems just gave me a pill and told me to rest I was coughing alot and they still didn't pick up on it it was all in my head now I have lost my voice which I love to get back they don't no how long I have and there are to special people in my life I would love to thank is my 2 sons especially one who. has stayed by me busy staying close to mi is Danielson who will do anything thing for me jay would but works long hours but doctors over here ate here for money and that all one thing I would love to get back is my . voice because I have to have people talk for me there a lot more I could say but I would get in a lot of trouble
I have just been diagnosed with multiple myeloma and I am totally opposite of you in that social media is the last thing that I would want in this journey. I don't want any past relation ships knowing about it, or people I don't know very well knowing about it, etc. And all of the people I will tell, will be told not to spread it around. I guess I'm from the old generation and don't want to highlight myself in front of others.
I was diagnosed a couple years ago had a recent SCT doing fine. They can treat it now Dr tells me all the time. I belong to a Facebook group for people with MM and I don't know of anyone that has passed from this disease since I joined the group two years ago...
I understand where you are coming from, but I think people going on social media and discussing their symptoms and their journey can help others, especially if a doctor is ignoring your symptoms.
I have had mystery symptoms for almost 10 years...2 years ago I even asked if it could be something in the endocrine system and was shot down because that would mean a tumor... but she never bothered testing or looking... I've taken a turn for the worst lately and match symptoms... literally as though they wrote it from my chart. I even found a study of a case of aortic dissection with a kidney cyst... that turned out to be a neuroendocrine tumor that caused the issues that caused the dissection... that's exactly what happened to me. But my doctors never bothered testing the "cyst", and every doctor after reading it in the chart, couldn't think beyond it. What in the world do we pay so much to doctors for if we have to do their job for them. Plus, it's not the first time I've heard that in order to get diagnosed, you need an inside contact... what a system.
Physicians these days have a complete over reliance on imaging. Unless myeloma has advanced to the point of classic lytic bone lesions ( eg pepperpot skull) imaging has no part in diagnosis. As a practicing radiologist, i had many requests investigating the cause of hypercalcaemia. This was usually a request for US+ CT+ mammogram+/- breast US. In other words “ radiologist do my job for me”. I obliged by first looking at the biochemistry for them, noting the elevated Total Protein and low serum Albumin. So i wrote them a note telling them to check gamma globulins +/- electrophoresis, and for Bence Jones proteins in the urine.
My dad got diagnosed with MM in June of 2023 went into remission in March of 2024, & is now doing stem cell treatment so he can remain in deep remission. He is 69 years old & he went through the Velcade shots, the Revlimid pills & the bone infusions for 7 months till his oncologist said he was in deep remission but they didn't want him to have to go back on chemo so they tested him to make sure he could take doing the stem cell transplant which he is currently at City of Hope doing now. Hopefully it all works out. Positive vibes sent to this poor lady &keep on fighting!
Thank you so much for your story.i always think knowing how you got to a diagnosis is so important. Unfortunately it often takes years to know what is wrong. Is it lack of knowledge or neglect? Don't know how to say that any nicer.
My dad had multiple myeloma , he had a biopsy along with many blood labs. His white blood cells increase and started chemo along with a very expensive pill it the chemo was a shot given weekly . Had a tube surgery implanted( it sure it name ) for dialysis but couldn’t start it it had to heal for One day he try to go for a walk got to end of driveway and turn around went to bed. The next day I look in on him he didn’t look right, grayish color and very warm called my sister after calling his doctor office when my sister arrived she was a nurse. And call emergency service took him to hospital and he had a leg wound that got infected they eventually did a urgent dialysis hook up . He ended up having septis and eventually move to him to palliative care and about 4 days later he passed . I felt bad he didn’t want to die in the hospital but he did .
I can so much relate to the statement that "you just wanted to go home and rest"... That is so frustrating, being physically completely exhausted and at the same time mentally exhausted from all the gaslighting. I've had symptoms since February this year, cannot count how many trips to the doctors and the ER I did. My symptoms are just getting worse and worse, I cannot function, the only thing I want is to sleep and the "doctors" keeo telling me theres nothing wrong with me and they give me antidepressants.
Thank you for sharing. This is pretty scary how similar her early experience is to what I am going through now with fatigue and unexplained anemia and blood transfusion scare. I’m waiting for hematology appointment but I’m curious is this is a potential diagnosis. ER doctor who referred me to hematologist kept asking if I’ve even been diagnosed with any cancer.
In a holding pattern with MGUS. Considering myself very lucky that my PCP and GI were aggressive with finding the source of my unexplained diarrhea and vomiting (no nausea), dizziness. The GI found the MGUS in a celiac panel and sent me to hematology/oncology asap. Evaluated and thankfully I’m only seen once a year at this point for surveillance but cautioned to call immediately with any escalating symptoms. My only advice would be: only deal with doctors, NP, who see you as an entire person and not their specialty. I got very lucky with having a close relationship with the GI Dr as he treats my son and husband for Crohn’s. He went right to work being an investigator and found MGUS. Gives me knowledge and an early start on treatment should it shift to MM or amyloidosis. Scary place to live but I’ve learned to be grateful for “early warning system”.
Karen, wow, SO glad that your doctor was on it for you!!! Catching early with what you called the "early warning system" is so much better than if everything had gone unnoticed. Such a great example of the importance of having a doctor who, as you put it so well, "sees you as an entire person." Thank you for sharing. ❤️ BTW if you want to share your experience with finding the MGUS, please just fill out our Intro Form (thepatientstory.typeform.com/to/OJfTUC) - and I'll fast track your story. Thank you -Stephanie
I, too, have MGUS. I have been through the bone marrow biopsy (so not fun!), full body skeletal xrays, and blood checked every 6 months. Not in love with wait and see.
@@suegairns7647 ask your doctor about taking Quercetin . At 75 I too am positive for the M protein in both my blood and urine and am at the waiting stage of MM myself. So I take 500 mg a day of Quercetin with Vitamin D3; multivitamin, and Pepcid. Read and share this with your doctor “ The flavonoid quercetin has shown anti-tumor effects against a variety of solid tumors. However, its effects on multiple myeloma (MM) remain unclear. In this study we examined the proliferation of human myeloma cell lines U266, KM3 and RPMI8226 and MM derived cells from four patients with MM after quercetin treatment, and detected the expression of IQ motif-containing GTPase activating protein 1 (IQGAP1), a scaffold protein involved in mitogen-activated protein kinase (MAPK) signaling, by reverse transcription-polymerase chain reaction (RT-PCR) and Western blot analysis. We found that quercetin inhibited the proliferation of MM cells in a dose- and time-dependent manner, accompanied by reduced IQGAP1 expression at mRNA and protein levels, and reduced extracellular signal-regulated kinase 1/2 (ERK1/2) activation. Furthermore, we found that quercetin inhibited the interaction between IQGAP1 and ERK1/2 in RPMI8226 cells. In summary, our results suggest that quercetin suppresses the proliferation of MM cells by down-regulating IQGAP1 expression and ERK activation, and has potential as a novel agent to target oncogenic kinase cascades for MM therapy. Keywords: IQ motif-containing GTPase activating protein 1; MAP kinase pathway; Quercetin; multiple myeloma.
My sister was diagnosed in January 2022 of multiple myeloma which destroyed her kidneys because she developed amyloidosis as a complication of the multiple myeloma she went to see 1000 doctors no one could figure out what was wrong with her she broke out into blisters come and go hives, Her blood pressure was through the roof she were to get nausea and other symptoms I’m not aware of however now she’s going through dialysis three days a week for her kidney failure not sure what medication she’s on but I know she’s doing chemo.
January 1, 2023 I went to the emergency room for lower back pain and they did a CT scan CAT scan and when the doctor came back in, they told me that I had two fracture ribs one the right and one on the left and they said that they saw suspicious of cancer in my bones that I needed to see my primary doctor as soon as possible. So I made appointment to my primary care doctor sent me to have bloodwork, done and when he got the test results back, he called me on January 31 when I got off from work and told me to go to the emergency room right now so I did and they admitted me they sent me to Baptist Hospital that night. When the doctors came around that morning they sent me to have a bone biopsy a kidney biopsy and they took a lot of blood and I also had two blood transfusions, and I also had five treatments of plasma I had chemo and they told me that I have Mulitple Myelom so I was in the hospital for 16 days. So when I left the hospital, I had to get an appointment to start radiation. I had 2 1/2 weeks of radiation. Then I had to do chemo four months of chemo then I got ready for my bone marrow transplant. I had to go to hospital the whole month of August getting ready for my transplant on August 30 I had my transplant. I was in the hospital for about four days. I went home ended up back in the hospital. I was running a high fever and I came home. My transplant was successful. I didn’t need a donor. They use my cell so I had to go back to the doctor 100 days after my transplant so on December 14, 2023 I went back to see My oncology. He said that they saw no cancer in my bones that I was in remission. so I’m still going to see My oncology I still see my kidney doctor, but I am doing well. I still have injection. I’m on Revlimid for my maintenance. I just thank God for my my team of doctors and caregivers.
It started with fatigue and feet tingling. A Neurologist ordered a full blood work up and a couple of things were not in range. A second more Specialized set of blood tests showed even more things wrong with me!! I just found out the bad news yesterday and watching TH-cam videos today to learn as much as I can. I have to absolutely force myself to get out of bed for the last 7 months now. I walk around like a zombie most days!
I was diagnosed 10 years ago after also being misdiagnosed for over 2 years. By then my bones had many lytic lesions. After RVD and a stem cell transplant, I was in remission, but now it's back.
Sorry to hear, what were your symptoms. Ive been struggling lately and they keep trying to tell me anxiety or stress but I know its more. I've been getting chest pain, extreme fatigue at times and sometimes need sugar to not feel so weak, shortness of breath, bad nausea and dizziness, weird stuff with vision, hairloss and scar like lesions on scalp. Red bumps on face, and swollen lymphs. Have gotten so many test, like endo/colonoscopy, and they haven't labeled any root causes and aren't taking me serious.
Thank you so much for sharing your story, Marni. I have MGUS. My general partitioner has been keeping an eye on it. My lGg numbers have climbed to around 2000. I have had numbing in my feet and have asked could it be neuropathy? I have been going back and forth with bronchitis, coughing spells that just don’t get rid of as well as anemic. I just got over pneumonia. I have asked my doctor if all my symptoms could be related to the MGUS. He brushes all my symptoms it off. It is very frustrating. I am going to be more persistent about sending me to a hematologist.
Peripheral neuropathy can accompany MGUS, and you can also have more infections that last longer. Try to get hold of a doctor who listens to you so you can be followed better.
My brother in law got multiple myeloma in 1995. He got the flue and was hospitalised. They did blood tests and discovered the myeloma. He died two years later. He was only 46 yrs old.
Vicki, so sorry you experienced such loss. Thankfully, there have been many more developments and advancements in treatment and understanding of how to treat myeloma.
So sorry for your loss. It's sad losing a loved one from this dreadful disease! Prayers to you for peace and comfort to know that your loved one isn't suffering any longer and is in a better place resting in peace. 🙏😔
My symptoms are extreme lower and middle back pain and then the skin issues that are strictly dealing with incapacitating itching, skin sores, slow healing, extreme fatigue, infections (mono, fungal, staph aureus, infections colitis and acute kidney injury). I too went to an Allergist, and the Dr did a metabolic blood panel and CBC and those were normal. I also had a “Protein Electrophoresis” and Tyrptase blood test and I am currently waiting on the results. I’ve had a few episodes of abdominal pain but blew it off.😮 I forgot to mention that my leukemia and lymphoma test were negative.
My symptoms are alot like hers mine started in 2010 diarrhea and vomiting for weeks thought it was just a bug was in Iraq. Then had flu like symptoms at least once a week that progressed over the next 10 yrs to turning daily. Battled with fatigue and sickness daily until 2022 when it didn't abruptly stop but slowed down tremendously and then the migraines started then rib cage pain went to the hospital and was discharged twice with slightly high cpk readings referred to cardiologist found out I had a heart attack when I was in my 20s and no further testing or diagnosis and was released. After 2022 to current weakness set in and pain in my chest went to my legs to one arms to both arms and now have a extremely high cpk and kidney problems and concentration problems. Doctor is not 100 precent yet myeloma but am bieng tested for it and a bone scan first time in almost 14 yrs doctor took me seriously and truly is digging into it.
My husband has multiple myeloma. He was diagnosed with anemia a year before his diagnosis. I knew it wasn’t normal for a man to be diagnosed with anemia so I told him to have his doctor to investigate further. The doctor, whom I could not stand, refused. I knew it was because I suggested the anemia further. My husband said his doctor was certain it was just anemia and prescribed iron. A year later I was getting ready for work and he mentioned that he had a headache. He NEVER had headaches! I looked at him carefully and realized that he looked terrible, ashen. I asked him if he took his blood pressure. So he checked it and it was like 185/105. I had to work, I’m a cna and had to find someone to take my shift, so I said go to urgent care. He called me and said they sent him to the ER and he was admitted. His bp was through the roof at this time, his anemia was horrible and his kidneys were not functioning well. It took a bit for the diagnosis and in the meantime he was suffering. It was basically a nightmare. Omg I hated that primary he had!! Dialysis 3 days a week, chemo treatments twice a week and plasmaphoresis twice a week. His kidney function was about 13%. He’s in remission but we’re still dealing with the affects of it. Awful awful awful cancer to deal with! I hope you’re doing better 🙏🏼. God has been good to us! Our church family was there in every way.
My grandfather 76 was diagnosed with mm a month ago he had stage 4 kidney failure in the low 20% they were able to get his kidney levels back in the 40s
Hi Amy! How is your husband doing? I am praying for you and your family. God is a mighty God. Your husband will have a very powerful testimony. I call him healed, whole, and well in Jesus’s name-Amen.
@@stacytaylornewkirk8652 wow Stacey❣️thank you for caring 🙏🏼! He’s okay but recently has had an uptick of his kappa light chain that his oncologist wanted to start chemo again. He has to see his kidney doctor next week because his kidneys are taking a beating too. Not enough for any dialysis though. I second your prayers that Bob is healed; in Jesus Christ name-Amen! 🙏🏼⚔️🕊️♥️God bless you and your family really good 😊
Another tragic story…I realise that covid is on the mix, but aren’t doctors trained to screen for cancer? So many of these stories find people living with cancer without a proper diagnosis…
Myeloma typically comes with anemia. They noticed that it is due to too much hepcidin which makes iron in the body unavailable. Iron in Multiple Myeloma, 2013 “Patients with this disorder almost universally suffer from clinically significant anemia, which is often symptomatic, and which is due to impaired iron utilization. Recent studies have indicated that the proximal cause of dysregulated iron metabolism and anemia in these patients is cytokine-induced upregulation of hepcidin expression” Now what they don’t realize apparently is that the normal reason for high hepsidin is too much iron stored in the body. It is after all the body’s way to reduce iron absorption from food. Given severe anemia, this must mean severe iron overload is common in myeloma. Since most cancers can be caused or aggravated by too much iron accumulated over the years, it seems reasonable to think the same is happening here, especially if you have other signs of diseases that can be caused by iron overload. I do not see right now why exactly this (or anything else) would lead to overproduction of one antibody. It’s weird to me they don’t check what the antibodies (when whole) are actually for. Is it possible for infections to elicit an extreme response like in myeloma, and the only abnormality is the immune system just keeps going, because somehow the antibodies don’t have an effect? Maybe it’s simply that there is too much iron in the bone marrow region, say from earlier trauma injury, and the B cells had to switch on cancer program to survive all the iron. This would lead to proliferation of clone cells or basically an exaggerated response to some pathogenic antigen with down regulation failing. Someone had the same idea and showed that iron removal makes the cancer cells go away. Unfortunately no one has ever financed a clinical trial for cancer treatment with a relatively inexpensive drug like iron chelators. Iron chelators induce autophagic cell death in multiple myeloma cells, 2014 “. Iron chelation, in particular with deferasirox has the potential to be readily translated to a clinical trial for multiple myeloma.” Conversely, the price of the only good iron chelator without side effects has been kept high (not as high as cancer treatments but still prohibitive), maybe so that more independently minded groups could still not afford a trial. FYI EDTA is a chelator that is very cheap and works reasonably well.
I have a friend who had leukemia bone marrow transplant and on chemo He was in remission Now he's telling me he has myeloma cancer. Stage I. He tells me he's dying he knows it
I remember the time I went to the hospital and told them I felt like I was dying.. mmy blood pressure ended up being in the 200s. I guess we shouldn't brush off those funky feelings
US medical system is so screwed up and in so many ways. Many of us are screwed if we don’t have connections, clout and a large bank account. Our medical system is almost 3rd world country status for most of us. 💜
I’m middle class, no connections or clout but am getting great care and seeing top notch doctors. Our system has been great to me. Sorry you’re experiencing the opposite. Keep pushing!
My doctor said 5 years ago that I could possibly have mm I have the high calcium and the m spike now I ask for tests for it and ATM I have cuts that won't heal should I be worried
Your voice matters, too: Share with us what resonated most with you about Marti’s first segment. 👇
I think what rssonted most were her symptoms and how myeloma can present itself in different ways.
My story is very different from what other myeloma patients report in their interviews.
Take care!!!
Randy
mcran.com
@@rmcellig brave lady hope you going to be ok great thing is you have a family to help you I have lung cancer and live in Guernsey channel Islands and we don't get no answers I have one son who helps me and it horrible because they say the cancer took my voice away from me but I don't believe that cancer took my voice away just wish I no someone who did
@@traciearcher8759 hi Tracie!!
Is your treatment working for you? I'm in a phase 1 trial. The only one of its kind in Canada. After 5 weeks of treatment, I found out last week from my hematologist that I am in full remission again. Hopefully it will last longer than the last treatment. I hope you are getting excellent treatment and support!!!
Why do you show other people like one sleeping in a car etc. when they are not the subject or person in this video?
@@rmcellig I had the coronavirus and then I got stage four non-small cell lung cancer advanced, and it was caused by this reason , Deuteronomy 28:43 to 44 , and it’s spread to the entire entire world and killed the world
Googling is actually not the worst thing you can do. It has saved peoples lives when doctors didn’t have the time to do the research. I’m so sorry for how you found out. The Covid restrictions have caused trauma to so many. We will be dealing with that fallout for years to come.
@@Cwgrlup You are correct. The internet isn’t the same as an RN or MD but thank goodness for this patient who used all resources to get help.
Yes we will, so many lost lives!!! I had thought that the world was ending when the pandemic started!!! Dark times, I had to STOP watching the news all together!!!
It can be confusing though.
That's how I found out I have a disease named Scleroderma (Limited) because doctors were always being dismissive. I Google my symptoms and found out that disease. The antibody came back positive and still the awful doctors ignored me.
😢
I could have had the diagnosis since years ago but they never took me seriously.
I'm struggling with my health a lot because doctors had a stupid pretext for my symptoms.
I have something else than only scleroderma and I'm trying again to figure it out by myself.
Plus the damage that tye disease has already caused me. I'm in Germany. (In Mexico doctors ignored me too but here in Germany were horrible too).
😢
It's funny when doctors tell you "don't Google" because internet is not right. Funny! Because thanks google I found out what I really have.
😤
Yes, Googling is what allowed me to be able to identify a rare genetic disease that my doctors missed!
When I went to “Urgent Care” because of extreme pain on the left side of my ribs, the doctors on duty told me they could find nothing wrong with me. I continued to have this pain and ended up going back and forth to urgent care at least 4 times in 1 week. The last doctor 😂to examine me came into the exam room telling me that I was a hypochondriac and that they were tired of me wasting their time and that I would not be seen anymore and not to come back. I called my daughter and told her of my pain. She took me to the Emergency Room at Denver Health. I was admitted into the hospital, was there for about 3 weeks when they finally diagnosed me with Multi Myeloma. I am going on 5 years s of treatment and will be on this treatment for the rest of my life. 😊
I would sue that Urgent Care Center.
Dear Dolores. Can you tell me how your rib hurt. I live in UK. I have MGUS for 8 months I have a rib pain the worst is when laying down and sitting. The Doctors send me only for a cheat x-ray here. I done privately an abdominal ultrasound and colonoscopy. The pain is in around my back rib. Thinking of doing more tests privately as they do not want to send me in the hospital. Can you tell me if your pain was constant? Mine started like a sharp pain out of the blue. And is with me since February.
@@agnieszka.82my husband had the rib pain and that’s how he got diagnosed with MM. he actually had a broken rib from coughing so hard. He had a sharp pain this past week, went to the ER and they did blood tests and a CT scan. The scan revealed to small nodules. A biopsy via bronchoscopy showed non malignant and blood test results were normal. Next step is a PET scan to make certain. Hope that helps.
This is basically what happened to my mom. She had to admit herself into the ER to get proper treatment and diagnosis in a timely matter.
I cannot belief how often it is that patients are turned away, suggesting they’re hypochondriacs to later find out that they are deathly ill. This is a disgrace and people should be sued for this.
My dear friend was diagnosed with MM last year. She's in remission now. She's so brave. I hope it's not too long before they find a cure.
I will continue praying for you. I cried when I watched your story because I am dealing with the same thing. I am very scared now and I'm not so sure what the future holds for me anymore. I pray that God will give me the strength and courage to fight this cancer. I also have Bronchiectasis and it's making me very tired and exhausted at the end of the day. God help us all! Thank you for sharing your story. May God bless you.
❤
Praying for the sick and suffering.
God bless you all abundantly and fulfill all your heart's desires
With love and prayers.
My late husband was diagnosed with MM in 2008. He was treated at Siteman Cancer Center in St. Louis. He was 71 at the time he was diagnosed and at that time they didn't recommend stem cell transplants for patients over 70. He treated for 5 years before passing away 8/16/2013. But, I'm sure it was a difference in the treatment, but didn't lose any hair.
I enjoyed watching these videos, seeing that things are improving in treatment for MM.
A client had her own stem cells used at cedars Sinai and remission for 25 years. She’s 80 now. Swims two hrs every day, weights and stretch classes every single day
I love hearing that there is someone in remission for 25 years and had a stem cell transplant using her own stem cells.. I am in remission 10 years. I had a stem cell transplant using my own stem cells. I was given 5-10 years to live.. My doctors are so happy and consider me a miracle.. This story gives me so much hope
@@Draslidell that is incredible!!! That has brightened my day! I lost my oldest brother to stage 4 lung cancer that was caught WAY too late. He was diagnosed in late July and was gone in October.
My mom was diagnosed with multiple myeloma at 72 and because she was pretty healthy prior to the diagnosis and an only child without she was able to have an autologous bone marrow transplant. That diagnosis was almost 10 years ago and thankfully she's still here and doing pretty well ❤❤❤❤
Marti, I hope you know that by telling your story, you are opening a lot of eyes by people in the medical field. Thanks for sharing. Praying for you!
What a stunningly beautiful lady. I listened in awe to her story and she is totally amazing. On my 2nd bout of breast cancer and its a horrible time, but this lady so humbled me and I wish her the very best. She so deserves something good x
I have had 3 bouts of BC still here
I lost my dad to this horrid disease 33 years ago he was only 49 sleep easy dad till we meet again
😢🙏😔🌻🙏😥
I lost my father to it in 1996, he was diagnosed at 64
So sorry, we lost our dad in the 90’s. We were devastated. He passed 3 1/2 months after diagnosis.
I was diagnosed with MGUS early 2020. I thought I was there about high blood pressure or something related to my heart. I was stunned when the internist explained it is a precursor to potential myeloma. He followed that up with here are more tests we are going to do. A friend had passed from MM shortly before this. I was scared sh#@less, Bone biopsy, full skeletal review, and blood tests (every six months, the blood tests) with no idea if nor when everything may go sideways, it's hard. I try not to focus on it, except when waiting for blood results, but it's always in the back of my mind. Every ache pain or whatever leads to that question, "is this the symptom I am supposed to watch for." My heart goes out to anyone dealing with MGUS or MM.
Share the below information with your Doctor
I too am positive for M Protein in both my blood and urine. I have been taking from 500 up to 1000 mg a day now for two years and so far my blood still looks good with no anemia. Keep the faith
“The flavonoid quercetin has shown anti-tumor effects against a variety of solid tumors. However, its effects on multiple myeloma (MM) remain unclear. In this study we examined the proliferation of human myeloma cell lines U266, KM3 and RPMI8226 and MM derived cells from four patients with MM after quercetin treatment, and detected the expression of IQ motif-containing GTPase activating protein 1 (IQGAP1), a scaffold protein involved in mitogen-activated protein kinase (MAPK) signaling, by reverse transcription-polymerase chain reaction (RT-PCR) and Western blot analysis. We found that quercetin inhibited the proliferation of MM cells in a dose- and time-dependent manner, accompanied by reduced IQGAP1 expression at mRNA and protein levels, and reduced extracellular signal-regulated kinase 1/2 (ERK1/2) activation. Furthermore, we found that quercetin inhibited the interaction between IQGAP1 and ERK1/2 in RPMI8226 cells. In summary, our results suggest that quercetin suppresses the proliferation of MM cells by down-regulating IQGAP1 expression and ERK activation, and has potential as a novel agent to target oncogenic kinase cascades for MM therapy.
Keywords: IQ motif-containing GTPase activating protein 1; MAP kinase pathway; Quercetin; multiple myeloma. Best of luck. Cheers
I have MGUS and have been doing the blood tests and X-rays for about 8 years. So far, no MM and I just had my meeting with my hematologist today. I’m fine. Again!
I hope you continue to be ok.
Same here. I got bumped now to yearly bloodwork. Last time he said that I shouldn’t lose sleep over it and if it turned out I did have it, it would be very early stage. However it’s bad enough I have depression and anxiety and the month leading to this oncologist visit is horrible. Apparently my levels slightly elevated he said people who have uncontrolled allergies, sometimes their levels are elevated, yet these yearly bloodwork’s are for monitoring. He also told me my levels may always stay like this.
Cancer misdiagnoses always remind me of when I had a stalker. The police told me it was likely someone I worked with. After 2 years it turned out he had 29 victims, all in one area, all customer service workers, all reported it. Apparently the police don't speak to each other about cases, even in the same unit.
Wow, that must have been terrifyingly isolating! Hope he’s behind bars now.
@noname-4u Best wishes for that. Chronic conditions truly suck, and I hope you can still find some joys in life. Blessings to you.
@HeraclitusThoughtBubbles you have to change everything you eat totally little by little to rule out the culprit and to eradicate the illness. Do you take probiotics 1 st thing in the morning on empty stomach, 2) make green tea with no sugars if you need just add a tsp of honey, and you can add cloves and garlic for immunity 3) do you exercise even if you just walk as fast as you can for circulation.. no, pop, no artificial juices, little meat like can fit in the palm of your hand.(Salmon , baked chicken baked sweet potatoes etc, only olive oil for foods .Drink plenty of water and like a gallon a day and no junk food or processing. Eat at home much as possible and 1st you need to consult with God our holy creater and ask him to give you wisdom in your health in Jesus name because Drs are not God just agents of the health system who mostly doesn't believe in God or herbs. I been curing myself forever. It took Drs 39 years to say I had annorexia and they still don't know what was the cause. Some of these DR s shouldn't be Drs period
I am so sorry you went through everything to get the final answer. Sending you understanding thoughts and well wishing vibes!
I was diagnosed with multiple myeloma Jan 16/23.
I do not know how the heck I got this video, but I really loved that interview and her story. On Jun 28,2021, I walked into the hospital with TIA symptoms and huge fresh bruises on the lower part of my abdomen. Three months prior, I had been very tired, had huge bruises in odd places an never remembered getting hurt. My thought was to retire from a 43 year nursing career. I was admitted into the hospital thru the ER 15 min after my arrival. A normal platelet count is 158 and above. Mine was 6. A hematologist did a bone marrow biopsy the following day after having blood and platelet transfusions. The CT scan showed that I had a stroke. The bleed in my brain was caused by APL leukemia. We both have a different type of blood cancer, however the despair we felt was the same. Even telling my daughter was a matter of fact of life while she was crying on the phone. I almost died thru both of my chemo treatments while in the hospital. All of my body conditioning left me incontinent an unable to turn onto my side or lift my bottom up. By March, progress started happening and July1 2022, I left the rehab facility for home. It it weren’t for my husband updating social media and the church network, I do not know where I would be today. Thank you so much for sharing!
Wow. I am so glad to hear that you were able to return home and that you have great support around you! I would love to learn more about you and if you want to share your story, please write me directly - stephanie@thepatientstory.com. Big hugs to you!
Wow 🙏🏽🤍
Ive been extermely fatigued since January of this year..I explained this to my doctor in March..she just blew it off as stress...I just had my annual phyiscal this past week...Again I explained feeling like I was anemic and I had hip pain...however she said my bloodwork doesn't look like Im anemic...I go in for a bone density test next month because I have been diagnosed with osteoporosis 2 years sgo....I'll be 69 on the 23rd and I feel that the doctor is just blowing me off because of my age and the fact that I still work....
Have they checked you vitamin D, b12, TSH and PTH levels? If not ask for the tests. Osteoporosis might be linked low Vitamin D levels.
Also please check on your calcium level.
My mom have multiple myeloma and was extremely fatigued for 3weeks where she could only sleep and rest 22hrs a day.
She also had some memory loss and lost sense of time and aching bones, especially both her arms.
Got her to the ER and blood test revealed a very high calcium level in the body (due to the cancer ) and was admitted.
She is currently in the hospital, and the doctors are putting her on a drip and focussing on getting her calcium levels down. Hopefully she can get better once those calcium levels go down to normal level.
So yes, for those suffering from extreme fatique and aching bones, one thing to check for when you go to the hospital is to have your calcium level checked as well.
Blessings!
🙏
I’ve been having fatigue everyday for 2 years straight & had a major unexpected 25lbs weight loss. Blood work comes back normal.
It’s been so hard fighting to get seen
If nothing is found at the end of the month. My dr is finally referring me to a oncologist
Go to another Dr for another opinion.
Get a full blood panel to check blood markers
My brother was feeling very tired and felt like he was fighting something. He went to the ER at one point and was sent home. The next day he was worse and ended up passing out and an ambulance had to be called. They finally determined at the time he had sepsis and he ended up in a coma. We didn’t know if he would survive or not and they proceeded to run test after test, and searched for answers and did more tests . He ended up on life support and eventually was diagnosed with multiple myeloma. He was also very anemic. His family was approached about taking him off of life support. At some point he woke up when he heard the kids in the hospital room and was eventually able to be taken off of life support. It was a long struggle with him trying to learn to walk again, he’d lost a lot of weight, and they did more tests while they tried to decide if they could do any treatments. He was moved between two different hospitals but at that point was pretty much in a wheelchair. He left the hospital for a few day trips but was basically in there 8 months, as he continued to grow worse and family was told he was palliative. He survived only another day and passed away that night in the hospital. Obviously he was diagnosed too late and only survived 8 months in hospital and moths prior to that without a diagnosis or any treatment. I understand some people can survive for years after but only when they continue to seek a diagnosis and help a person.
Sad ….
Donna....I'm so very sorry for you and your brother...it truely renders my heart. The medical profession isnt perfect , to be sure. My main frustration is that in so many cases....early detection was skipped over....by the time a correct diagnosis is discovered....its far too late for recovery. Our adult son died 2 years ago. The knowledge of "what could have been" had he been taken seriously adds to the grieving and heartbreak for my husband and myself. For all of us, I quote a prayer......"May you find peace....May your heart remain open...May you heal"
@@ReclinerBabe thanks for your caring Sandra. I can’t imagine how hard it was to lose your son to this disease. It seems to be something that isn’t always picked up and the symptoms seem to be so varied, and often they pick the easiest diagnosis from the symptoms. I suppose even the patients themselves aren’t really sure what all their symptoms are by the time they aren’t feeling very good. With my brother he ended up having problems with his kidneys and after being sent home once, he developed sepsis which added another issue to things. From the time he first went to hospital till he passed was only 7 months.
@@donnamatheson3021 Sandy here. I've only just now been advised of your reply to my comments. I didnt mention before that my son, Jeff, took 2 miserable years to die....was first on palliative care for 1 year..then on hospice for anotherr. Modern medicine kept him alive... only to suffer longer. What a position to be in....to wish for your kid to stay and also to die at the same time! A true Mothers delimna.
My husband and I are 90 years old....never meant to outlive my 2 grown kids. My daughter in palliative care right now with bone cancer. I doubt we will handle losing her any better. It's not something you get better at with experience. I share this with you because few others understand what this is like. Sending you love and light. Oh, and thanks for your reply....you said it all so well. Maybe someone will benefit from our sharing.
@@ReclinerBabe Hi Sandy, thank you for your response. I’m so very sorry to hear that you lost your son Jeff, and now your daughter is also palliative with cancer. I can only imagine the terrible loss you are dealing with. We always hope that we will be the ones to go before our children, but unfortunately that isn’t always the case. You’ve lived beyond what so many others do, especially to get into your 90’s, and then to already lose your son and now having your daughter ill.
It must be heartbreaking for you both. I can only imagine what that feels like especially as I’ve had close friends who have lost children of different ages and I know it’s something they don’t seem to get over. Losing my only sibling was difficult as well, as I’d already lost my parents. , and I’ve also watched my aunt and uncle go through similar loss as you. They lost their middle son to cancer, and only a few years ago their youngest died of heart disease, and they are in their early 90’s. It’s hard to understand why we must deal with such losses in our lives;
It’s not easy!
I only hope you can find peace in your loss as you go through it together, and that you find comfort in the memories you both share.
I know it’s not easy. Thinking of you especially at this time and sending love & hugs to you. If you ever want to chat, please email me. d.matheson@rogers.com
💕🙏🥰🤗
😥😥😥
My friend passed away in March 2022 of acute leukemia, she had symptoms 2 years before diagnosis, first being sore legs, had 2 surgeries on tendons, that weren't successful, then loss of hair, lesions on her head, put down as a scalp condition, confusion, hallucinations, 4 1/2 hour trip to the phyatric unit in northern suburbs Perth Western Australia, then came the diagnoses acute leukemia, with the earlier symptoms, it wasn't so acute, years before she'd had cancer & was treated with chemo, that treatment can cause blood cancer, with her medical history I would have thought more attention would have been looked at her earlier symptoms...
All these different specialty areas show that the left hand doesn't know what the right hand is doing... Doctors need to take a step back a piece the puzzle together using critical thinking rather than the process of elimination. Between "testing" and the drug companies, patients are falling through the cracks while continuing to suffer or die needlessly. I have many, many stories of doctors discounting, gaslighting, pooh-poohing and outright bullying patients into shutting up and going away
Appreciate you spreading the word about Cancer
Always very informative and compassionate
For those suffering from cancer, and multiple myleoma, if at anytime you are suffering from extreme fatique and bone ache, a good start when you are seeing the doctor is to have your calcium level checked.
My mom have multiple myleoma, and recently was suffering from extreme fatiqued and bone aches, especially both her upper arms.
After three weeks, we finally got her to ER, and blood test revealed high calcium levels in the body.
I think its called hypercalsemia or something...
She is currently in the hospital (day 3) and hopefully once her excess calcium is treated, she will be able to regain some strength and stop being so fariqued.
Blessings
🙏
Thank you for this information and glad to hear your mom is feeling a little better. My mom recently was admitted due to suspected MM and they said she does have elevated calcium. She is in extreme pain😞
@@mijumaru97 🙏prayers for all and hope your mom gets well soon.
It took about 4-5 days to get the calcium lvl down to normal range for my mom.
She's feeling better now.
🙏
My doctor don't do face appointments and I'm so sad
Sometimes it’s hypocalcemia. My husband had very low calcium with his multiple myeloma. The first red flags were low iron level and exhaustion. This continued for a tear before Dr investigated with a CT scan which revealed severa bone lesions.
True, but any blood test will show as much as 18 different criteria consistent with myeloma, such as RBC, WBC,RDW,Platelets, Hemoglobin, A/G Ratio, Sodium, BUN, Creatine, Hemocrit, Calcium(as you mentioned), Protein, Absolute Monocytes, MCV, MCH, etc
Blessings on you and your recovery.
This is another horrible consequence of COVID. People not getting care for other serious illness.
This is an another consequence of them stopping everything else apart from covid , many many will die because of this
God bless anyone who suffers from this or any other health conditions ✝️🙏
Wow, thank you for this. I am currently in my 2nd bout with MM and this was the complete opposite from my story. Both times, I led off with bone pain (a broken vertebra my first time, shoulder pain the 2nd) and I never had any of the other CRAB symptoms. All the fatigue came later with the radiation treatments. Thank you for Marti's story. While so different than my story, it just goes to show we're all in this together.
thanks for sharing your story Marti. watching now.
Thanks for sharing,Marti
You are going through a lot
Lovely Family
Wow. I had definitely never heard of anyone having a reaction to Benadryl! That is definitely very scary. My dad was going through the process of potentially being diagnosed with MM when he died from traumatic injury as a result of a fall. Prior to that he had a long history of dizziness and fatigue and had all kinds of different diagnoses, none of which seemed entirely right. I’m glad you found a diagnosis and even better you have such a nice family to help in the support you need to go through this. It’s always important to have your troop and keep living life as best you can! Sending love, blessings and light!
It’s not what you know, it’s who you know. Always good to have an inside source.
That's so sad that you have to know someone to get the car we're paying for with health insurance premiums !
Thank you for sharing your story. At the moment of writing I’m awaiting my PET scan results. Starting having night sweats several months ago. Blood tests revealed that I was anaemic. Was referred immediately to a haematologist who ordered a CT scan. The scan showed I had a single enlarged lymph node in my oesophagus. They can’t get to this lymph node very easily due to its position. Had my PET scan with a dose of radiation on Friday. Get my results in 6 days. Funny thing is the night sweats have gone and I feel fine. My biggest worry is the effect this will have on my loved ones. Especially my elderly mother if it turns out to be cancer. I’m so sorry you had to go what you went through before diagnosis. I feel very fortunate after hearing your story. Wishing you all the best. 🙏🏼
Chris, wishing you the very best and hoping you get good news here. I know the wait can be incredibly hard... thinking of you. -Stephanie
@@ThePatientStory Thank you so much Stephanie, I really appreciate your kind words. So glad I found your channel, it’s so refreshing and gives a great insight in to people’s experiences. Best wishes to you and everyone battling this or any other serious disease. 🙏🏼🙏🏼❤️
How are you doing now? Have you found out anything more? 🙏🏼
@@phwshopping1426 Hi, hope you're having a good day. So the PET-CT scan came back normal. The enlarged lymph node in my chest appears "benign" and the scan showed no other enlarged nodes or areas that would suggest malignancy. I have since had a bone marrow biopsy. I get my results on Monday. It's always there in the back of my head but i'm trying not to worry about it. I've been watching my go to feel good films and TV shows and eating comfort food. I guess I'll be very anxious on Monday, However in this limbo time period iv'e managed to tuck it to the back of my mind.
Thank you so much for asking and will post the outcome when i get my results.
wishing you all the best.
chris.
@@phwshopping1426 latest update, bone biopsy was normal so the Haematologists are putting my symptoms and anaemia down to a bout of Covid I had just a few weeks before this started. (Not sure about that myself) However, night sweats are rare now and have more energy and back to work full time. Wishing you all the best and a blessed new year. 🙏🏼
I think the interviewer did a great job of exhibiting compassion and asking Marti specific questions that she knew the viewers would be interested in knowing the answers.
I'd like to tell my story. I also have multiple myeloma. How do I do this?
Meet a consulter as soon as possible . Try to have stem cell transplant .. that s the real treatment .. my experience is successful . Now I m not having medicine . My respect to the doctors ...Sri Lanka .
Thank you. Great story. Happy you are doing well.
Thank you for this story. Many parts of this I can relate to. I've had major issues with anemia since last November. I was back and forth to urgent care and the ER a few times, along with tons of doctors' visits to see why I always felt so fatigued and just unwell. I was waking up panting for breath with my heart pounding out of my chest. My Hb was 7.7. I was borderline for a transfusion. I ended up with 4 iron infusions and tests to see where the bleeding was coming from. As I had been having a lot of pain and issues with my period (51 years old) and everything else looking good, I had a hysterectomy. Seemed it was the solution, but the anemia is coming back and my wbc count is really low. I'm also experiencing a ton of bone pain.
I feel the frustration of going to and from doctors trying to figure out what's wrong and just wanting to feel better. Still looking for answers.
God bless, and thank you!
Gigi, sounds like you've been through so much. Thinking of you as you figure things out - so glad you are getting the attention you deserve. ❤️ Stephanie
Seek out a womens clinic or an oncologist. Last year I was diagnosed with stage 4b ovarian cancer. I have had chemo, surgery and chemo again. My white and red cells are not regenerating so I can’t take much needed post chemo, chemo tablets to insure it doesn’t come back. Bone pain, fatigue and numerous other symptoms. I am extremely fatigued and can hardly walk. Do something and stay on their butts.
@@alaskansourdoughwormsgarde4392 from a fellow OC patient (luckier in stage but symptoms still missed by docs for many months), I totally endorse this message. Docs should look at the whole picture, not just treat a collection of individual weird symptoms.
I pray you get with a better doctor. They are few and far between these days. My sister has been doctoring for decades. You people are so strong! I couldn't do it.
Doing an IFE with M spike blood test is so simple, I don’t know why more Drs don’t order it for their patients with these obscure symptoms. It would answer so many questions so quickly.
I just had this blood test done December 5, 2023, waiting on the results now! Bone pain in back and skin sores out of the blue, infections, fatigue) I was negative for leukemia and lymphoma and my allergist suspects myeloma.
I was diagnosed in February 2016, had my transplant in December 2016.
Happy to hear that you had been in remission for mire than 6 years..Can you share your maintenance therapy including your diet?
I would just like to share with you about me I'm from Guernsey channel Islands and we don't have cancer people who helps us over here o have lung cancer and I have been sick for a long time not at one point did anyone pick up on any systems just gave me a pill and told me to rest I was coughing alot and they still didn't pick up on it it was all in my head now I have lost my voice which I love to get back they don't no how long I have and there are to special people in my life I would love to thank is my 2 sons especially one who. has stayed by me busy staying close to mi is Danielson who will do anything thing for me jay would but works long hours but doctors over here ate here for money and that all one thing I would love to get back is my . voice because I have to have people talk for me there a lot more I could say but I would get in a lot of trouble
I have just been diagnosed with multiple myeloma and I am totally opposite of you in that social media is the last thing that I would want in this journey. I don't want any past relation ships knowing about it, or people I don't know very well knowing about it, etc. And all of the people I will tell, will be told not to spread it around. I guess I'm from the old generation and don't want to highlight myself in front of others.
I was diagnosed a couple years ago had a recent SCT doing fine. They can treat it now Dr tells me all the time. I belong to a Facebook group for people with MM and I don't know of anyone that has passed from this disease since I joined the group two years ago...
@@rodneythompson5248Please share your facebbok group
I understand where you are coming from, but I think people going on social media and discussing their symptoms and their journey can help others, especially if a doctor is ignoring your symptoms.
Sorry for your recent diagnosis. A post on here is actually joining in with social media though? Yes?
@@lillbits Nope I don't give my name and no one has any idea who I am
Such a lovely lady ❤️
I have had mystery symptoms for almost 10 years...2 years ago I even asked if it could be something in the endocrine system and was shot down because that would mean a tumor... but she never bothered testing or looking... I've taken a turn for the worst lately and match symptoms... literally as though they wrote it from my chart. I even found a study of a case of aortic dissection with a kidney cyst... that turned out to be a neuroendocrine tumor that caused the issues that caused the dissection... that's exactly what happened to me. But my doctors never bothered testing the "cyst", and every doctor after reading it in the chart, couldn't think beyond it. What in the world do we pay so much to doctors for if we have to do their job for them.
Plus, it's not the first time I've heard that in order to get diagnosed, you need an inside contact... what a system.
Physicians these days have a complete over reliance on imaging. Unless myeloma has advanced to the point of classic lytic bone lesions ( eg pepperpot skull) imaging has no part in diagnosis. As a practicing radiologist, i had many requests investigating the cause of hypercalcaemia. This was usually a request for US+ CT+ mammogram+/- breast US. In other words “ radiologist do my job for me”. I obliged by first looking at the biochemistry for them, noting the elevated Total Protein and low serum Albumin. So i wrote them a note telling them to check gamma globulins +/- electrophoresis, and for Bence Jones proteins in the urine.
My husband has Multiple Myeloma .Has had it for 20 years.Alot of ups and downs.Treatable but not curable.He goes to Johns Hopkins.
At what age your husband was dignosed.what treatment he is taking.my father is dignosed MM this month
My dad got diagnosed with MM in June of 2023 went into remission in March of 2024, & is now doing stem cell treatment so he can remain in deep remission. He is 69 years old & he went through the Velcade shots, the Revlimid pills & the bone infusions for 7 months till his oncologist said he was in deep remission but they didn't want him to have to go back on chemo so they tested him to make sure he could take doing the stem cell transplant which he is currently at City of Hope doing now. Hopefully it all works out. Positive vibes sent to this poor lady &keep on fighting!
Thankyou for sharing your story.
Thank you so much for your story.i always think knowing how you got to a diagnosis is so important. Unfortunately it often takes years to know what is wrong. Is it lack of knowledge or neglect? Don't know how to say that any nicer.
I have viewed several videos from this channel and it seems blood tests often do not detect cancer. Is that correct?
Correct
My dad had multiple myeloma , he had a biopsy along with many blood labs. His white blood cells increase and started chemo along with a very expensive pill it the chemo was a shot given weekly . Had a tube surgery implanted( it sure it name ) for dialysis but couldn’t start it it had to heal for One day he try to go for a walk got to end of driveway and turn around went to bed. The next day I look in on him he didn’t look right, grayish color and very warm called my sister after calling his doctor office when my sister arrived she was a nurse. And call emergency service took him to hospital and he had a leg wound that got infected they eventually did a urgent dialysis hook up . He ended up having septis and eventually move to him to palliative care and about 4 days later he passed . I felt bad he didn’t want to die in the hospital but he did .
I can so much relate to the statement that "you just wanted to go home and rest"... That is so frustrating, being physically completely exhausted and at the same time mentally exhausted from all the gaslighting. I've had symptoms since February this year, cannot count how many trips to the doctors and the ER I did. My symptoms are just getting worse and worse, I cannot function, the only thing I want is to sleep and the "doctors" keeo telling me theres nothing wrong with me and they give me antidepressants.
Thank you for sharing. This is pretty scary how similar her early experience is to what I am going through now with fatigue and unexplained anemia and blood transfusion scare. I’m waiting for hematology appointment but I’m curious is this is a potential diagnosis. ER doctor who referred me to hematologist kept asking if I’ve even been diagnosed with any cancer.
In a holding pattern with MGUS. Considering myself very lucky that my PCP and GI were aggressive with finding the source of my unexplained diarrhea and vomiting (no nausea), dizziness. The GI found the MGUS in a celiac panel and sent me to hematology/oncology asap. Evaluated and thankfully I’m only seen once a year at this point for surveillance but cautioned to call immediately with any escalating symptoms. My only advice would be: only deal with doctors, NP, who see you as an entire person and not their specialty.
I got very lucky with having a close relationship with the GI Dr as he treats my son and husband for Crohn’s. He went right to work being an investigator and found MGUS. Gives me knowledge and an early start on treatment should it shift to MM or amyloidosis.
Scary place to live but I’ve learned to be grateful for “early warning system”.
Karen, wow, SO glad that your doctor was on it for you!!! Catching early with what you called the "early warning system" is so much better than if everything had gone unnoticed. Such a great example of the importance of having a doctor who, as you put it so well, "sees you as an entire person." Thank you for sharing. ❤️ BTW if you want to share your experience with finding the MGUS, please just fill out our Intro Form (thepatientstory.typeform.com/to/OJfTUC) - and I'll fast track your story. Thank you -Stephanie
My mom had MGUS.
I, too, have MGUS. I have been through the bone marrow biopsy (so not fun!), full body skeletal xrays, and blood checked every 6 months. Not in love with wait and see.
@@suegairns7647 ask your doctor about taking Quercetin
.
At 75 I too am positive for the M protein in both my blood and urine and am at the waiting stage of MM myself. So I take 500 mg a day of Quercetin with Vitamin D3; multivitamin, and Pepcid. Read and share this with your doctor
“ The flavonoid quercetin has shown anti-tumor effects against a variety of solid tumors. However, its effects on multiple myeloma (MM) remain unclear. In this study we examined the proliferation of human myeloma cell lines U266, KM3 and RPMI8226 and MM derived cells from four patients with MM after quercetin treatment, and detected the expression of IQ motif-containing GTPase activating protein 1 (IQGAP1), a scaffold protein involved in mitogen-activated protein kinase (MAPK) signaling, by reverse transcription-polymerase chain reaction (RT-PCR) and Western blot analysis. We found that quercetin inhibited the proliferation of MM cells in a dose- and time-dependent manner, accompanied by reduced IQGAP1 expression at mRNA and protein levels, and reduced extracellular signal-regulated kinase 1/2 (ERK1/2) activation. Furthermore, we found that quercetin inhibited the interaction between IQGAP1 and ERK1/2 in RPMI8226 cells. In summary, our results suggest that quercetin suppresses the proliferation of MM cells by down-regulating IQGAP1 expression and ERK activation, and has potential as a novel agent to target oncogenic kinase cascades for MM therapy.
Keywords: IQ motif-containing GTPase activating protein 1; MAP kinase pathway; Quercetin; multiple myeloma.
Thank you for telling people to go to a doctor NOT nurse practitioners or physician’s assistants.
Is this the same as myeloproliferative?
My sister was diagnosed in January 2022 of multiple myeloma which destroyed her kidneys because she developed amyloidosis as a complication of the multiple myeloma she went to see 1000 doctors no one could figure out what was wrong with her she broke out into blisters come and go hives, Her blood pressure was through the roof she were to get nausea and other symptoms I’m not aware of however now she’s going through dialysis three days a week for her kidney failure not sure what medication she’s on but I know she’s doing chemo.
January 1, 2023 I went to the emergency room for lower back pain and they did a CT scan CAT scan and when the doctor came back in, they told me that I had two fracture ribs one the right and one on the left and they said that they saw suspicious of cancer in my bones that I needed to see my primary doctor as soon as possible. So I made appointment to my primary care doctor sent me to have bloodwork, done and when he got the test results back, he called me on January 31 when I got off from work and told me to go to the emergency room right now so I did and they admitted me they sent me to Baptist Hospital that night. When the doctors came around that morning they sent me to have a bone biopsy a kidney biopsy and they took a lot of blood and I also had two blood transfusions, and I also had five treatments of plasma I had chemo and they told me that I have Mulitple Myelom so I was in the hospital for 16 days. So when I left the hospital, I had to get an appointment to start radiation. I had 2 1/2 weeks of radiation. Then I had to do chemo four months of chemo then I got ready for my bone marrow transplant. I had to go to hospital the whole month of August getting ready for my transplant on August 30 I had my transplant. I was in the hospital for about four days. I went home ended up back in the hospital. I was running a high fever and I came home. My transplant was successful. I didn’t need a donor. They use my cell so I had to go back to the doctor 100 days after my transplant so on December 14, 2023 I went back to see My oncology. He said that they saw no cancer in my bones that I was in remission. so I’m still going to see My oncology I still see my kidney doctor, but I am doing well. I still have injection. I’m on Revlimid for my maintenance. I just thank God for my my team of doctors and caregivers.
You really had a great team and support for having getting treated right ahead.
That’s do awesome….. I’m getting ready to
It started with fatigue and feet tingling. A Neurologist ordered a full blood work up and a couple of things were not in range. A second more Specialized set of blood tests showed even more things wrong with me!! I just found out the bad news yesterday and watching TH-cam videos today to learn as much as I can. I have to absolutely force myself to get out of bed for the last 7 months now. I walk around like a zombie most days!
That’s the way I have felt since January. Seen docs 3 x since. No diagnosis but feel terminal.
I hope you're going well
I was diagnosed 10 years ago after also being misdiagnosed for over 2 years. By then my bones had many lytic lesions. After RVD and a stem cell transplant, I was in remission, but now it's back.
Sorry to hear, what were your symptoms. Ive been struggling lately and they keep trying to tell me anxiety or stress but I know its more.
I've been getting chest pain, extreme fatigue at times and sometimes need sugar to not feel so weak, shortness of breath, bad nausea and dizziness, weird stuff with vision, hairloss and scar like lesions on scalp. Red bumps on face, and swollen lymphs. Have gotten so many test, like endo/colonoscopy, and they haven't labeled any root causes and aren't taking me serious.
My grandmother passed away from this cancer.
Thank you so much for sharing your story, Marni. I have MGUS. My general partitioner has been keeping an eye on it. My lGg numbers have climbed to around 2000. I have had numbing in my feet and have asked could it be neuropathy? I have been going back and forth with bronchitis, coughing spells that just don’t get rid of as well as anemic. I just got over pneumonia. I have asked my doctor if all my symptoms could be related to the MGUS. He brushes all my symptoms it off. It is very frustrating. I am going to be more persistent about sending me to a hematologist.
Peripheral neuropathy can accompany MGUS, and you can also have more infections that last longer. Try to get hold of a doctor who listens to you so you can be followed better.
My brother in law got multiple myeloma in 1995. He got the flue and was hospitalised. They did blood tests and discovered the myeloma. He died two years later. He was only 46 yrs old.
Vicki, so sorry you experienced such loss. Thankfully, there have been many more developments and advancements in treatment and understanding of how to treat myeloma.
@@ThePatientStory it was a death sentence back then. We were devastated. He had a young family. Very sad.
Very sad!
So sorry for your loss. It's sad losing a loved one from this dreadful disease! Prayers to you for peace and comfort to know that your loved one isn't suffering any longer and is in a better place resting in peace. 🙏😔
I'm so sorry!
My symptoms are extreme lower and middle back pain and then the skin issues that are strictly dealing with incapacitating itching, skin sores, slow healing, extreme fatigue, infections (mono, fungal, staph aureus, infections colitis and acute kidney injury). I too went to an Allergist, and the Dr did a metabolic blood panel and CBC and those were normal. I also had a “Protein Electrophoresis” and Tyrptase blood test and I am currently waiting on the results. I’ve had a few episodes of abdominal pain but blew it off.😮 I forgot to mention that my leukemia and lymphoma test were negative.
My symptoms are alot like hers mine started in 2010 diarrhea and vomiting for weeks thought it was just a bug was in Iraq. Then had flu like symptoms at least once a week that progressed over the next 10 yrs to turning daily. Battled with fatigue and sickness daily until 2022 when it didn't abruptly stop but slowed down tremendously and then the migraines started then rib cage pain went to the hospital and was discharged twice with slightly high cpk readings referred to cardiologist found out I had a heart attack when I was in my 20s and no further testing or diagnosis and was released. After 2022 to current weakness set in and pain in my chest went to my legs to one arms to both arms and now have a extremely high cpk and kidney problems and concentration problems. Doctor is not 100 precent yet myeloma but am bieng tested for it and a bone scan first time in almost 14 yrs doctor took me seriously and truly is digging into it.
How are things going for you?
I'm so sick of doctors not looking at the big picture. You were just in there for something very odd and she doesn't think they may be related?
Yep they are arrogant and assumptive and very dismissive.
My husband has multiple myeloma. He was diagnosed with anemia a year before his diagnosis. I knew it wasn’t normal for a man to be diagnosed with anemia so I told him to have his doctor to investigate further. The doctor, whom I could not stand, refused. I knew it was because I suggested the anemia further. My husband said his doctor was certain it was just anemia and prescribed iron. A year later I was getting ready for work and he mentioned that he had a headache. He NEVER had headaches! I looked at him carefully and realized that he looked terrible, ashen. I asked him if he took his blood pressure. So he checked it and it was like 185/105. I had to work, I’m a cna and had to find someone to take my shift, so I said go to urgent care. He called me and said they sent him to the ER and he was admitted. His bp was through the roof at this time, his anemia was horrible and his kidneys were not functioning well. It took a bit for the diagnosis and in the meantime he was suffering. It was basically a nightmare. Omg I hated that primary he had!! Dialysis 3 days a week, chemo treatments twice a week and plasmaphoresis twice a week. His kidney function was about 13%. He’s in remission but we’re still dealing with the affects of it. Awful awful awful cancer to deal with! I hope you’re doing better 🙏🏼. God has been good to us! Our church family was there in every way.
My grandfather 76 was diagnosed with mm a month ago he had stage 4 kidney failure in the low 20% they were able to get his kidney levels back in the 40s
Yes, Anemia is the first warning sign in about 70% of the time with Myeloma, RBC and Hemoglobin lower than normal
Hi Amy! How is your husband doing? I am praying for you and your family. God is a mighty God. Your husband will have a very powerful testimony. I call him healed, whole, and well in Jesus’s name-Amen.
@@stacytaylornewkirk8652 wow Stacey❣️thank you for caring 🙏🏼! He’s okay but recently has had an uptick of his kappa light chain that his oncologist wanted to start chemo again. He has to see his kidney doctor next week because his kidneys are taking a beating too. Not enough for any dialysis though. I second your prayers that Bob is healed; in Jesus Christ name-Amen!
🙏🏼⚔️🕊️♥️God bless you and your family really good 😊
Marti doesn'tt look old enough to be a grandmother. She's so young and healthy looking.❤
Thank you 💖💖💖💖💖
Another tragic story…I realise that covid is on the mix, but aren’t doctors trained to screen for cancer? So many of these stories find people living with cancer without a proper diagnosis…
Its taken 2 years to get an ortho to actually diagnose an obvious need for hip replacement....you have to advocate for your self.
Thanknyou🎉
For 2 year ive been struggling and now i have ptsd dealing with doctors
I don’t like the go between of this channel- I prefer to hear directly from the patient.
Why so many adverts in between your videos? It looks kinda greedy to me.
Myeloma typically comes with anemia. They noticed that it is due to too much hepcidin which makes iron in the body unavailable.
Iron in Multiple Myeloma, 2013
“Patients with this disorder almost universally suffer from clinically significant anemia, which is often symptomatic, and which is due to impaired iron utilization. Recent studies have indicated that the proximal cause of dysregulated iron metabolism and anemia in these patients is cytokine-induced upregulation of hepcidin expression”
Now what they don’t realize apparently is that the normal reason for high hepsidin is too much iron stored in the body. It is after all the body’s way to reduce iron absorption from food. Given severe anemia, this must mean severe iron overload is common in myeloma. Since most cancers can be caused or aggravated by too much iron accumulated over the years, it seems reasonable to think the same is happening here, especially if you have other signs of diseases that can be caused by iron overload.
I do not see right now why exactly this (or anything else) would lead to overproduction of one antibody. It’s weird to me they don’t check what the antibodies (when whole) are actually for. Is it possible for infections to elicit an extreme response like in myeloma, and the only abnormality is the immune system just keeps going, because somehow the antibodies don’t have an effect? Maybe it’s simply that there is too much iron in the bone marrow region, say from earlier trauma injury, and the B cells had to switch on cancer program to survive all the iron. This would lead to proliferation of clone cells or basically an exaggerated response to some pathogenic antigen with down regulation failing.
Someone had the same idea and showed that iron removal makes the cancer cells go away. Unfortunately no one has ever financed a clinical trial for cancer treatment with a relatively inexpensive drug like iron chelators.
Iron chelators induce autophagic cell death in multiple myeloma cells, 2014
“. Iron chelation, in particular with deferasirox has the potential to be readily translated to a clinical trial for multiple myeloma.”
Conversely, the price of the only good iron chelator without side effects has been kept high (not as high as cancer treatments but still prohibitive), maybe so that more independently minded groups could still not afford a trial.
FYI EDTA is a chelator that is very cheap and works reasonably well.
To counteract anemia, the best approach would seem to be heparin. Heparin downregulates hepcidin.
I have a friend who had leukemia bone marrow transplant and on chemo
He was in remission
Now he's telling me he has myeloma cancer. Stage I.
He tells me he's dying he knows it
"Anger is a direct manifestation of fear".
Well great. I just need to marry a man that will tell his good friend, “ I’m sending my wife to YOU. I think she’s dying.”
The inserted pics of various unrelated persons are just a terrible distraction and detract from the story.
Appreciate the information otherwise.
My husband began with extreme rashes… after 2 days of tests hospitalize walked in and said -you have cancer-and left…just left
Wait a minute....I bet I dont even have this.....I have absolutely not one symptom of it except for when my food is poisioned.
I remember the time I went to the hospital and told them I felt like I was dying.. mmy blood pressure ended up being in the 200s. I guess we shouldn't brush off those funky feelings
Saya baru saja kehilangan ibu saya krena penyakit mengerikan ini😭, belum sempat di kemo 😭
US medical system is so screwed up and in so many ways.
Many of us are screwed if we don’t have connections, clout and a large bank account. Our medical system is almost 3rd world country status for most of us. 💜
I’m middle class, no connections or clout but am getting great care and seeing top notch doctors. Our system has been great to me. Sorry you’re experiencing the opposite. Keep pushing!
🙏🏼❤️🙌🏼❤️
😢❤❤❤❤❤
the 13 min mark...I am there now...:(
Oh my goodness, they tried to make virtually everything Covid!
The interviewer talks too much. Shutup and let the patient talk.
The interviewer is a cancer survivor herself. I think she’s just asking questions that she herself maybe relating to.
Magically allergic to sugar
Peeing machine
You look much better without hair. 😘
If you get it the decisions are hard. Your care it based on how large your wallet is. Shamefull!
My doctor said 5 years ago that I could possibly have mm I have the high calcium and the m spike now I ask for tests for it and ATM I have cuts that won't heal should I be worried