Nicole's Hodgkin Lymphoma Story: "I Just Didn't Feel Right" | The Patient Story
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- เผยแพร่เมื่อ 23 พ.ย. 2024
- Nicole was a wife and mother of three when she was diagnosed with classical Hodgkin’s lymphoma. After giving birth to her third child, she didn't feel "normal." She knew something was wrong when she felt extreme fatigue and when a rash started appearing on her skin. But doctors kept telling her she was fine and blamed her symptoms on postpartum.
Desperate for answers, she turned to a functional medicine doctor who gave her a multi-cancer early-detection test. After testing positive for cancer, she then started her cancer journey.
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I was diagnosed with stage 4 Hodgkins Lymphoma when I was 15. All the signs were there, we just didn’t realize the signs at the time. I’m 53 now & cancer free Praise God!
Omg, I had that rash. I also eventually figured out that when I thought my cancer was returning: it was really lyme, bartonella, babesia, and RMSF. Drs ignore these. Please keep these infections in mind my fellow Hodgkins survivors! Also: there is a case on the NIH where a man was misdiagnosed as Hodgkins lymphoma, when it was really bartonella, otherwise called cat scratch disease.
@@channel8-bit433they thought my lymphoma was going to be cat scratch because I had pain in a swollen lymph node and “they don’t normally see pain in cancer”
Stage 4 here, currently on treatment and a month away from my first control PET. Thank you for your message, I love hearing these stories.
Stage 4 here to from UK male 33 I have 2 kids 1 and 3 my lil girls 8th Nov 23 I'm 3 months in to chemo had my 2nd pet scan and my cancer is shrinking still got finish off my chemo
@@CJR90 all the best. You've got this.
I had a chest exray from an allergy doctor 3 weeks before Christmas, and it showed I had a huge mass in my lung so big it was pushing out my rib. I went to my primary Dr, and she scheduled me for a pet scan. I lit up like a Christmas tree. I had over 150 masses, and 5 were in my heart. Couldn't get in with a cancer Dr. Because it was the holidays, so I was a walking dead woman for 2 weeks... unbelievable how your life changes.. I was 47 years old, but I felt fine except for the fact that I was dying young. So I had to drive 3 hours to a hospital to get a biopsy of my tumors it wasn't cancer guys. I had histoplasmosis, it was from bird feces, my husband was tilling up soil under blue spruce trees that were 100 years old, and I was inhaling that into my lungs. That was the first time I realized what a lottery winner feels like. For this young woman, I can feel your pain and worry. I really think you have what it takes to beat this. I will be praying for you 🙏
She is a strong young lady, I wish her and you all the best ❤️
I'm glad that it was not cancer!
But its interesting that pet scan actually lit up 🤔🤔 I though it shows only cancer cells
Amazing really.
I am so happy for you!🙏🏻🙏🏻🙏🏻
Thats when you go to energency room to a hospital that has a cancer center asap. Cancer cannot wait!
Our healthcare system is so broken. The amount of energy we have to put in to just get testing is absolutely mind boggling. People dealing with serious issues should not be under this amount of stress just to get a diagnosis.
Thank you for sharing your story with us.
Thank you for this and understanding why I would share
It’s due to health insurance policies. Doctors are often at the mercy of health insurance, even medical/Medicaid. They do not want to pay for “unnecessary” procedures. It’s ridiculous. Universal health care with focus on prevention is way more cost effective and healthier for all people than what our current system is doing
testing is expensive, and not without side effects. every CT scan has a 1/2000 chance of causing cancer down the line. if everyone in the country with a rash and fatigue got a CT scan you'd be causing more cancers than you'd catch
All doctors and specialists need to hear this. It shouldn’t be this hard to save our lives.
@@Cwgrlupes, but many people also die because of this kind of treatment. It would be nice if there was a cheaper way to weed out if there is a problem to continue looking into & when there is not.
The health & drug industry corporations are truly more about making money rather then helping those in need. They can throw prescriptions at people that have no affect rather than actually sitting down & listening.
It's always about the money.
It wouldn't matter. You could never penetrate a Dr's ego.
Unfortunately this callousness in patient care is what med schools promote by producing robots for doctors that are mostly trained to push pharmaceuticals and are shunned for even considering naturopathic treatments and cures 😮😢
Thats a perfect way to put it. 1,000,000% AGREE. 🙌👏👏
@courtneystringer9450 big pharma is not looking to cure the disease, only the symptoms. It's about the 💵 💲 🤑 💸
I am where you were. I have been feeling like something is wrong for 2 years. I have had scans and bloodwork and everything showed nothing. I have been so tired, I have had pain in my chest and neck but everything was always fine. Christmas I got really sick and I felt like I never recuperated. End of February I felt so sick I went to the ER. Double pneumonia! But something else showed up...lots of enlarged lymphnodes. Next was pet scan and they lit up on that scan. This may sound weird but I am so glad that people are finally listening! I have been feeling unwell for 2 years, can't sleep for 1 year because of night sweats and at 56 I am so tired of having everything blamed on Menopause.
i get this so much i so sick of hearing it is your age
Then what was it? Did you get diagnosed with cancer yet?
research Castleman's Disease.
I'm also 56 (and menopausal), been asking for tests and scans since I started having abdominal pain in January. All I'm able to do is check off one "system" at a time. So far, we've crossed off digestive and reproductive. Now have armpit and groin pain, but without a palpable lump or fever it isn't taken seriously. So what was your diagnosis?
I was misdiagnosed for over a year, because I was 19. When I finally burst into tears, & pleaded with the doctor to do SOMETHING, I was diagnosed with stage 4 Hodgkin’s Lymphoma. Obviously, I survived, but I shouldn’t have been ignored.
What were your symptoms? How did you know something was wrong?
@@emilinebelle7811 I had ALL of them. I unintentionally lost weight, was extremely pale & got tired easily (I was immediately transfused - my body wasn’t making blood cells at the time of diagnosis). I was having night sweats, breaking out in hives, & horrible back pain (the tumors were “chipping away” at my scapulas). I suddenly had to pee in the middle of the night, & I had a visible lump on my chest (the tumor there was “pushing my sternum forward”). But, I was 19… so, according to my doctor, “I was fine.”
@@leanneharrington5612 that’s horrible. Doctors can be such asses
@@emilinebelle7811 Interestingly enough, I felt more vindicated rather than angry!
@@leanneharrington5612 I feel like I have so many of those symptoms but doctors don’t listen. They tell me it’s just anxiety
Love this woman’s attitude. She is strong and such a spit fire. I pray she lives a long happy life❤❤
I’m glad you pushed it! I beat breast cancer 13 years ago. Last year I thought I had colon cancer. Long story short, colonoscopy was clear but I still felt off. A month later I went in for my annual mammogram and they found it. Triple negative breast cancer. Bilateral mastectomy, chemo, all of it! That’s the first, I knew something was wrong. About a month ago I hit a deer on the highway. I had been complaining that the chemo port catheter was poking my heart, I couldn’t breathe, I was waking up gasping, well because of the deer and a trip to the hospital they found 2 pulmonary embolism. I’m glad the ER doctors listened to me. That deer saved my life! No one took me seriously! Self advocacy is a must! Prayers to you! You look like a fighter and you have your reasons! 💪🏽🌷
I’m going through the gaslighting phase right now. It’s so frustrating and angering.
@@KnockOut242 it is frustrating! Speak up and demand the tests you need!!! Good luck to you! 🙏🏽🫶🏽
@@nonyabiness4023 Than you so much. Many blessings sent your way ❤️
I was gaslighted for over two and a half years. My primary even lied on my health notes and put that I had anxiety and would need behavioral therapy or meds if I couldn't get it under control. That's after I told him I wasn't stressed but in pain. It took another 10 months of suffering after that visit to finally have a doctor at urgent care take me seriously and send me to a urologist. Turns out I had bladder cancer. Funny thing is, I told my mom after my final visit to my primary that I thought I had cancer. I told her I didn't know what kind but I really think I have cancer. Point is - you know yourself best and if you know something isn't right, keep pushing until you get answers.
So sorry you have had to deal with all this. I'm really happy you're here. And much thanks and love for the deer !!!😊
Let’s protect this woman with everything we have!!! She is a GIFT to humanity ❤❤❤
Beautiful too❤
She is so dear and a character, too 🥰🥰
In 1985 at age 18 I was diagnosed with stage 3 Hodgkin’s disease. Tumor by my heart. 3 months ABVD. Then my mom was like I don’t like this doctor. We changed doctors then did 6 months MOPP. Then 6 weeks of radiation. 2010 had a heart attack. Stent right coronary artery. 3 months later diagnosed with DCIS. Bilateral mastectomy. 2022 Basel cell carcinoma. Move last month stage 0 vulvar cancer. It’s crazy. Now I’m getting referred to an oncologist genetic testing. I’m not sure how much more my body can take. But I keep going.
Wow. Hang on! That is so much to be going through. I'm on a rough road myself right now, one thing after another on top of the other things, but I am hanging on. I understand how tiring it can get though and I will keep you in my prayers.
Praying for you 🙏🏻
Im a psychologist. What she’s describing is a « gut feeling » and « intuition » and it’s REAL and should be followed. Period.
what about hypochondria related gut feelings?
@@KooksEntertainment-dd6oe hypochondria feels like anxiety like when you feel like a high school boyfriend is cheating on you. you obsess and google symptoms all day. gut feelings and intuition shouldn't be unpleasant. even if your gut feeling is about a cheating partner, it'll be a calm knowing. but if your thoughts about the cheating bring tons of anxiety, you're searching his phone and stomach upset, its probably not your intuition. hope that helps.
It is not a gut feeling or intuition, it is the immune system being activated and disrupted. They are classic symptoms of Hodgkin's Lymphoma, they unfortunately are also classic symptoms of lots of other things. I have had this experience. In my case it took about 4 years between fatigue symptoms starting and any enlarged lymph nodes.
Im in Utah USA dealing with something serious due to covid was put on hold. I suffer daily and its so debilitating. They've now sent me to a therapist who states its all in my thinking. Im usually very healthy and intuitive. I was diagnosed with lymphoma in 1992. But not an issue now?
@@Mrs.Robinsons no one should be saying it’s in your head, there are therapists that respect intuition, gut feelings and manifesting ect
I love your story and your attitude. I am a registered nurse and cancer survivor. I had the “advantage” of being older when I was diagnosed. I do believe that younger people are brushed aside too easily and told “you are too young”. That’s just not true anymore. 45+ years in nursing the one thing I learned is that if a patient told me they didn’t feel right that was my clue to watch them like a hawk. To look beyond the obvious. Especially when I worked ICU. All their numbers could be perfect and then after saying something is wrong, or I don’t feel right they would crash! People need to believe in their innate ability to understand their bodies and not be pushed around by the experts. Health care is no longer what it was when I first graduated in 1974. Now it’s all about protocols not about observation and using your brain to make care decisions. Today you input the information and the computer spits out a care plan… holy hell will ensue if you disagree with the “protocol”. I am so glad you spoke up for yourself! You were brave, self assertive and you trusted your instincts. Good on you! God bless you and just keep being strong❤️
Thank you for being in the industry & able to tell truth at the same time.
That is rare these days.❤
People like yourself are a literal God send. My Nan was a nurse during the London bombings, she went on to become a nurse and will be 100 next spring. I was born a year after you graduated and have observed the changes myself so I can only imagine what you and Nan have seen. Thankyou for caring and understanding.
So disappointing to hear that it’s such a struggle to get a diagnosis. It shouldn’t have to be this hard. Thank you for sharing your story, and for teaching all of us how to self advocate. 🎉
What a sadly familiar story. It’s extremely traumatic, emotionally devastating, psychologically depleting, and overall isolating experience. Wishing you so much love and compassion.
Thank God you advocated for yourself!! We have to ALWAYS. My husband is a stage 4 cancer survivor (renal cell carcinoma). He’s been in remission for 6 years. I am the one that asks ALL THE QUESTIONS until I get the answers. Sending you lots of love and strength. ❤
❤
It really helps when there is someone to advocate for you, because the patient is usually considered to be hysterical and ignored. Also, medical practitioners, of all types can easily take out their frustrations on you in a passive aggressive manner.
God bless you! My mother had lymphoma back in the mid 80’s. Then about 4 yrs later, the cancer came back as leukemia. She did not make it through that and passed away in 1990. I was only 23 at the time and it was devastating to me, bc she was my best friend!
I know there are so many more treatments available now, that weren’t back then. I can’t help but feel if there’d been the medical advances back then, she would have made it through! She was a strong woman and a strong Christian, and she was the bravest person I’ve ever known!
I pray for a complete healing for you, for good!
Thank you so much for sharing your story! I think you’re so brave and amazing for standing up for yourself and what you knew was off within your body!
I don’t believe anyone should have to go through what you did, in order to get help! You hear it said so much, that early detection in any type of illness or cancer,can be the key to a hopefully complete recovery, but the hoops people have to jump through just to get something done or covered by insurance, wastes too much precious time!
God bless you and your family!🙏🏻❤️
Be mean. Be difficult. Make people listen to you. You shouldn’t have had to coordinate all that either. I am so sorry you went through all this.
Hear hear! ❤
You can now order your own blood tests on line and go to the lab and have your blood drawn and tested for a plethora of tests. Skip the PCP non-sense. I'm doing it tomorrow morning and I scheduled the test two nights ago. Apparently I'll have the results in 1 day on line. Since the pandemic, my company cancelled the health fair events and since I have a HSA it is already paid for. Can't wait to see the results and hopefully feel better and figure out whatever the hell is wrong with me. Fingers crossed!
@@pdmarie63don’t you have to pay out of pocket though?
Exactly. Let those doctors take offense.
I have a friend who’s a medical advocate; that’s her profession. She seems to know much more about medical conditions thsn most doctors snd she’s tenacious and dedicated. That’s what you need/needed.
I’ve been gaslit for the past 15 years or so 😢 now just undergoing work up for lymphoma. Thank you so much for the validation. I’ve beaten myself up for years for being lazy and tired all the time.
I hope it turns out negative 🙏🏻. And if it is please use this woman’s fire 🔥 to guide you through. Cancer is no longer a death sentence but it’s a fight ❤
This just randomly came up on my feed. You may have saved my life.
Your story couldn't have resonated with me more! I'm a nurse and recently dubbed a cancer survivor (I used to say I was a cancer treatment survivor) and your medical diagnosis is nearly identical to mine. Good for you for advocating for yourself! I also didn't have any symptoms pointing to Hodgkin's, was the mother to 3 young children, and was pushing 40. Luckily I didn't experience the drawn-out process you had to endure to get a diagnosis; I had mild chest pain at work and "just didn't feel right," got whisked off to the ER and by the end of the day was told I probably had cancer when they found a mass 10cm by 8cm in my chest. It was very quick and shocking. Thank you for sharing your story. Hang in there and I'll be rooting for you!
What a vibrant woman and a gorgeous family. Well done for fighting for yourself and your family. Wishing you a lifetime of good health. 💗
That really means a lot thank you
My story is similar. Took over a year for the Drs to figure it out. I did not present straight forward. My mass in the chest was 9 inches wide. Drs could not feel anything either because the lymphoma grew inward. I had masses in my throat and chest that started choking me. The other masses spread through my body. I ended up with night sweats towards the end before my diagnosis. I had a hysterectomy in 2015 May, the 3rd day after, the rash you showed the picture of started on my arm and would come and go then it ended up all over my body by 2016 May. I felt like I was being bitten by fire ants and mosquitoes 24/7. I2 close to suicide because Drs specialist specialist could not figure it out. I could go on and on but you basically told the story. I'm disabled now because the chemo destroyed my body. I still have gratitude and lots of good and love that surrounds me. The check is over, I've been in remission for 5years but I cannot go out in the sun, I can Harley walk around the block when it's over cast, I have about 3 solid hours of energy a day then I'm done. I could not find anyone like me until this story. This has been a nightmare but I'll end with this, God showed up and had carried me when I couldn't. 🙏
Chemo (one year) destroyed my colleague's immune system (non-Hodgkins stage 4). She is on lifetime infusions to boost her immune system and it helps a lot. Is that a possibility?
Touching. I’m glad God has carried you when you could no longer carry yourself. It’s beautiful to hear you say I have gratitude, as this is such a powerful state of mind to be in, it takes a very resilient and strong person to realise and appreciate the blessings in your life and be accepting of “what is” hugs to you. Your story makes me sad and I wish I had the power to give you some sort of cure for that terrible fatigue, so that you could make more memories and enjoy life a bit more. Sending you my love and prayers x❤
Divine Intervention saved my life to. I’m am so grateful.
xoxo this makes my heart happy
My case in western USA is so similar! While I had lymphoma in 92 medics have told me its in my head since covid. Gaslighting to the point of therapy instead. Medics are overwhelmed with high student loans & help is tough to find
It’s pretty sad that most of the time when cancer is caught it’s too late. The medical profession is being negligent about this.
Women experience such an incredible amount of medical gaslighting. It took me so many years to get my MS diagnosis for this exact reason. I was told my symptoms were being caused by my age (36 at the time) and because I was a mother. Many doctors claimed I was making up my symptoms or that I had a functional disorder. I'm so sorry it took you so long to get a diagnosis.
65 yr old, overweight but active female- had a fall, slipped/flew off top of deck stairs, Memorial Day 2023. ER doc dx'd knee fracture, ignored ankle and hip fracture potential. So did ortho surgeon #1
8 weeks later, trying to rehab knee and PT suspected hip fracture. 10 days later, ortho surgeon #2 said "probable hip hairline fracture and ankle fracture" equating tremendous difficulty with gaining independent walking. Both female and AGING led to this neglect. The ER didn't even review how I fell and landed which led to a HIP FRACTURE.
Men do too. Doctors love to attribute everything they can't figure out or is a slightly vague symptom (fatigue, etc) to be mental health symptoms or stress. I am so fed up with the medical system, so few know what they are doing, it's scary.
Argh...What were your symptoms? Mine is just itchy rashed for 4 months. Got diagnosed with wrong things and wondering if it's Mycosis fungoides.
Men do aswell, they always think men are there for drugs or just flat out don't believe anything we say
Why you are talking this?? Woman overalk have better health and live longeer than males you are lickly in reality dont be a victim
Thanks for sharing! I went thru exact same thing and cancer when I was 25& pregnant (had wait till baby born to start treatment) we are fighters!!
My daughter had same🥲 it was a nightmare, but she survived thnx to her twin brother donating his stem cells❤️ I cried for 2 years but now she’s better than ever🙏 she has 2 sons. She’s now 44❤️❤️
What was her diagnostic?? She do stemm cells transplant?? Can you help me pray for me at least? Mim Guilherme im 33 years have 2 cronic incurable auto imunne dissease crohns dissess suffering cronic pain more than 10 YEARS 24 HOURS daily morphine...
And now diag with lymphoma tumor...
I dont have nothing cant work due my disseaeses in my country brazil extreme poor inequality i cant earn nothing bc even with cronic incurable disseaess just with extreme high expensive good process agaisnt the system to i win that can take YEARS to finish...
And even if i win win just minimal wage salary that is 200$$ monthly in brazil my mothly meds cost HALF of this..
I dont have father im poor dont have even 20&& in my bank nothing think giving up everyday...
Living most pooriest corrupt social inequalitu countries can you help me? I want do online funding but i dont knlw im using translations im from brazil...
I live 24 hours in pain even my fingers is affected i cam write much due pain dont have anynoyne can help me dont have girlfriend nothing all my life suffering 15 years half my life with since doag 2 cronic auto imunne disseases crohns dissease and hashimotos...
I desperate need help loost the trust that exist good ppl since so much suffering abuses i passed..
😭
I so feel for you! I was misdiagnosed 5 1/2yrs to find i was stage 4 NHL. Im so grateful for my team now & remission coming up on 13 years!!
Prayers for your full recovery & getting the care you deserve🙏💕🙏
What was happening to you over those 5 years? If you don't mind saying that is. Glad you're in remission 💜
Same with me, misdiagnosed for 4 yrs and then I was stage 4 NHL. I was 37 and kept being told nothing was wrong. Exact words out of the doctors mouth when finally I was diagnosed was you were so young and healthy we never would have suspected cancer!
I’ve relapsed 4x’s, I’ve had 2 bone marrow transplants but my last one my body reject my donor giving me chronic graft vs host disease which then brought on scleroderma. My entire body was being attacked very bad and the scleroderma made my entire body hard as stone unable to move for 5 yrs. I laid in bed for 5yrs unable to move and doctors said I would never get out of bed again. The best way I can describe the way I felt was like I drank cement and it hardened inside me in the position I laid. I had chronic chronic pain. Just the weight of my pajamas hurts my skin. Horrible bedsores since I couldn’t move my body at all. Round the clock nurses taking care of me. One day I noticed I could wiggle a toe. Slowly I began some movement. It’s now been 8 yrs since I was able to move my toe and I now can get out of bed🙏🏻 My doctors couldn’t believe when they saw me again. I can’t stand up straight or walk well but I can get out of bed. My whole journey has now been 22 yrs. God Bless
@@lifewithcancer916 omg I can't imagine what you've been through.. All the best best to you ❤️
Thank you like I can't thank you enough. I'm a healthcare provider of 27 years and they won't listen to me. 6 months in doctoring and not much progress. A hematologist turned me away because my blood work was not bad enough. Major symptoms 1.5 years. Last year an infectious disease doctor did mention Hodgkins, but I didn't have insurance to run his $20K worth of tests. I ordered the Galleri test today. You may have just saved my life. I cannot thank you enough. God bless you.
My Galleri test kit arrives Monday, and I'm getting my blood drawn. Then two weeks to answers. I was in the ER Wednesday night, the lumps in my armpit and knee on fire burning. I pleaded and begged, and they refused to do a CT. I see a infectious disease doctor Monday. I pray I get my CTs I've desperately requested for 3 months now. Either way, I really feel that the Galleri test has got my back. Everything I have read about it has been very good. It is such a precious test. I was very glad to read that if anything shows up, they will counsel my physician on the next steps. Thank you Patient Story and thank you Nicole.
I truly wish you the best, and thank you so much for your commitment to healthcare
I feel all the pain everyone here has gone through. I have been seeing a hematologist since 2019 with what started as a fever for 10 days, then weight loss extreme fatigue , and a low white blood cell count. Sent me to a hematologist-oncologist and then covid started and put everything on hold. Here I am in 2023, now not only is my white blood cell count abnormal so is my hematocrit, hemoglobin, red blood cell count and failed a reticulocyte test for bone marrow. I still have not been diagnosed with anything I'm on a watch and wait as I watch myself slipping away. They suspect MDS, myelodysplastic syndrome but offer no treatment. I've halfway lost the fight and 100% trust in the medical industry as a whole. The system is absolutely broke and I'm at the point now to where I don't trust regular medicine. I will pray for each and everyone of you. God bless you all.
Can you hire a registered nurse consultant? You need an advocate as you’re being brushed off.
@@elizabethmcleod246 I didn't know that was something that you could do. I will look into it. Thank you for the advice. Greatly appreciated!
@@snorhunrez9764 I had to hire and pay a registered consultant to advocate for me. I was able to get the life saving surgery I needed because she spoke on my behalf to the doctors who were NOT helping me as they said they would AND she spoke to the best neurologist in Vancouver who in turn approved of my surgery.
Transfusions and Medication may help manage the symptoms AND a BONE MARROW TRANSPLANT MAY HELP LESSEN the need for transfusions OR SLOW OR PREVENT IT TURNING INTO LEUKEMIA, SO PLEASE TRY to find a hospital or DR that is willing to HELP YOU get a bone marrow TRANSPLANT ASAP from a match preferably a family member. Best wishes for you
@@snorhunrez9764see my text below, you might need a bone marrow transplant if you have MDS, the more they wait the higher the chances of something going wrong. Good luck to you 🙏
I struggle with thyroid issues and every so often something feels off. Ten years ago it took 18 months to be diagnosed with Lyme. Now, I am "off" again. My thyroid is bouncing all over. A girlfriend said to get checked for lymphoma, but it's crazy. I can't even get a blood test ordered that I'd pay for out of pocket. Watching your video helps me feel like I'm not alone
I swear - every one of these stories I listen to, just makes me even more grateful for my PCP. She really listens. She'll order the necessary tests, and if she doesn't feel qualified to handle something, she'll send me to a specialist. I've had quite a few big things come up over the recent years - cancer, endometriosis (which doctors ignored for 30 years), an unexplained debilitating abdominal pain that went on for 2 solid years, etc. It has never been a struggle to see and talk with her. I've been so thankful for her anyway, but these videos just make me even more so.
What tests diagnosed your ccancer ?
@@navairamasood Hi, Navaira.
I had melanoma, so I had a biopsy.
You are very very lucky.
It’s horrible that we can’t just get these blood tests for cancer without having to pay so much money for the tests. Most people I know could never afford to have the test.
I was in Thailand, and I had a full medical exam, and they found colorectal Cancer. I was only stage one. I know if I have been stateside I probably would not have tested as early as I did thank goodness it was easy to get tested in Thailand. I brought my results back to the US for treatment.
How did they find it, what test did u have done
I f
Dont believe that
how old are you? how wonderful u caught it early!!
I relate so much to being relieved to have a diagnosis. It’s weird because you are grieving this new normal but also so greatful to FINALLY know why you have felt so bad for so long. You’re definitely not alone if you feel that way
I am praying for you. I have been through something similar. I felt terrible for 2 years and finally found out I had H-Pylori. I felt so sick from the bacteria in my stomach. I was told I had anxiety and my cbc was normal. I had low potassium like a drug user and my food wasn't processing correctly. I felt like I was dying from the inside out basically rotting. I met Dale Wicker and he knew what was wrong. I was having muscle spasms and shakes and vision problems. It was absolutely terrible no energy and just terrible smelling breath. I had breakouts in my hair line and my wounds wouldn't heal like normal. It's scary being put on medication they say you're fine. I went to 6 doctors not counting the ER doctors. God bless everyone who is going through something like this. Keep pushing and go to other doctors if you know in your gut it's not what the doctors are saying. I went as far to leave my 3 year old daughter a letter in case I died before they figured it out. It's scary because honestly some doctors like she said only know what they know. Thank God for Doctors that truly listen to their patients. 🙏
The fact that you had to jump through so many hoops and do so much of the leg work to get answers and start treatment is ridiculous to me. The medical system in this country really leaves a lot to be desired. (And that's putting it lightly). So glad you got what you needed and i applaud you for your tenacity and warrior spirit. God bless you in your journey. 🙏🏼
Oh my! What’s it gonna take for people to understand when you know your body, YOU KNOW YOUR BODY!!
Nicole, you’re not alone. Thank you for sharing your story. I too have unexplainable experiences that I’m left alone (no help from doctors) to try and figure out myself. The health care system can be difficult to navigate when you don’t have textbook symptoms. I’m wishing you the best! You’re a beautiful being inside and out.
That means a lot to me thank you
I’m so glad you stuck with your gut instincts and pushed for all the tests. Thankyou so much for sharing your story. I’ll be praying for your quick recovery ❤
This is so sad to me as a now retired US RN. It’s just a shame the awful conditions American Healthcare is in where patients are supposed to diagnose themselves? It’s a shambles.
Yep, have a pituitary lesion and knew something was the matter. Instinct that it was a tumor in my brain but I was close enough, how could I have known? Except just like this lady, just knew. Then the doctors tell me it can't cause the symptoms so now I study pituitary textbooks
I had stage 3 leiomyosarcoma I have had 29 surgeries along with bladder removal. Now I’m having severe body aches night sweats horrible rash upper arms and I can’t get anyone to listen. I feel like my body is giving out. Finally got me set up to go to UT cancer center Monday. I originally go to Duke. The struggle and fatigue is real and depression. I was 38 weeks pregnant when I found out I had cancer before and that was scary for the fact I wanted to raise my baby. Fast forward 10 years they just look for sarcoma and I’m screaming over here something else is wrong. My lymph nodes are enlarged in upper chest my grandmother had non Hodgkins lymphoma. I’m so tired of the medical. So tired of being tired. I have a 12 year old and struggle to even get out of house to do fun things. I love your attitude.
I am going thru this very same thing. I also have had Hypothyroidism with Hashimotos and have for 20 years. But now, I've had severe bone pain in my long bones (none in the joints) labs come back good. I've had 3 episodes of a lot of blood in the urine and still labs are good. Just had a nuclear bone scan that marked a hot spot in the 6th or 7th anterolateral rib, next had a CT and it showed a fractured rib (no injury, never felt it either) also showed a 13x21 mm enlarged lymphnode in the right Hilar Mediastium. I am a medical professional and know things BUT still can't get things rolling ect. I've been chasing this for 3 years and have only gotten this far. I am so glad that I found this video. Thank you!! I need your neighbor! Like you, no fever or night sweats but I feel exhausted 24/7 my bones hurt and massive headaches. No palpable lymphs. I hate to say it, even admit it, but our healthcare system is so broken.
It sure is 😢
Praying for a speedy recovery.
I was relieved to finally get diagnosed. For years I was gas lit and went through so much hell. By the time they diagnosed, the cancer had spread throughout my body. Stage 4 Hodgkin's lymphoma. It's been 8 years and I want to warn anyone having symptoms like a slightly elevated white cell count or weird rash, please listen to your body. Advocate for yourself 👏 Proud of you HL survivors 👏💚
What treatment did you get for your condition?
I need to ask u sone questions
I don’t know where to even start. I’m exhausted
I am a nurse and also someone who has suffered from a life threatening chronic illness. I understand how hard it is to get specialists to listen, to get the tests you need, the road blocks in your way and how the system just does not gel and how hard it is to navigate. I would really love to advocate people like yourself through the diagnostic mind field. It’s something that is lacking and people just do not know how or why to navigate this hell hole. Be mean, don’t apologies this system is so horrible. It is a very lonely journey and scary too. Thank you for sharing your struggles to get the diagnoses this will help others to understand what their experience may be like, everything is so backward and the double and triple handling of different imaging, testing is just wrong. Why not just do a full body pet/ct scan right at the start? Stupid! I’m
So so sorry you have had to go through all of this dear xx
Because every scan costs crazy money to the NHS. Doctors are told to not use them as much as possible, or to save them ...call it as you want. When I took my little daughter to the hospital to have a dropper because she was running out of liquids, they didn't give her because it costs money to NHS - doctor said this straight to my face and sent us home. In the end, after my demanding, he let me stay in the hospital over night with her but still didn't give a dropper. I have million examples like this because my daughter is constantly ill. The best they can do, give antibiotics for a child, that's it, in UK. Extremely disappointing system and useless.
@@laimasher8915it's terrible here isn't it. I'm still fighting my doctors for my bloods to be checked
Love her personality. And sending you prayers and healing ❤️🩹 🤍
Thank you for sharing your story. Sending you a big healing hug
I had a full on Pet Scan head to pelvis and still was misdiagnosed…it is a complete struggle to get a diagnosis. Healthcare is broken and doesn’t lean into what a person is feeling and knowing in their gut that something is wrong.
I'd love to hear how the functional doc helped you with your thyroid. Thanks for sharing your story. Sending so much healing light ✨️💖
Wow, please keep us posted…wishing you the very best on your journey to recovery 🙏❤️
Going through this now. Im 52 yrs. Its taken 30 yrs for someone to finally help me and now im dying. I put it all in Heavenly Father's hands. Im so sorry your going through this.
🙏🙏🙏 I'm so sorry this has happened to you. Your only 52 is there nothing they can do for you. Or is it they just can't be bothered. Please don't give up, your young. Fight for your rights. I certainly pray you get help. Go to the places the women in the video suggests. Please don't give up fighting for your right to be treated, so you possibly can have a chance of survival.
Me too at 54😢
It took them 1 year to find my hodgkins lymphoma. By then it was stage 4b. I also had ABVD chemo. I was 50 yrs old. It made me so tired. I still suffer from fatigue, almost 20 years later.
My niece is 28 starts treatment Monday her Dr is very positive for her treatment.
I wish her the best. 🙏 My bf had 2 rounds of escalated BEACOPP and 4 rounds left
❤❤❤❤
Good luck Nicole and God bless. I'm hopefully all clear of Uterine Cancer. I had to go Private to get the timely medical help I needed in the UK. Wishing you all the very best. ❤
The galleri test here in the UK is still in clinical trials.. I'm part of a 3 year trial.. On my second year. I'm happy to think I'm part of something that will eventually save many lives..
You’re the second cancer person video I watched today who didn’t show classic cancer symptoms until after a virus. Then it all came through.
Praying for you.
Ohhh boyyy am so proud of you lady for sharing your story..just listening to gives me strength to face my battle ahead...everyone is telling me it's menopause symptom you have anxiety it's panic attacks etc. But my body is telling me something is wrong.🤷🏾♀️
So full of life. Thank you for sharing your story with us. Hope you heal well. :)
I'm sorry this took so long.. but as a dermatologist and functional medicine doctor I see very often people disregard rashes - the one you had(from what I saw in the pictures) was most likely erythema annulare centrifugum or erythema multiforme - it signals for malignancies, especially lymphomas, so normally I would always do extensive testing and exclude that first. So if only a dermatologist saw it early enough the diagnosis could've come earlier. Rashes or any skin conditions are very closely associated with so many conditions, so don't overlook them...
Its amazing what you just stated here in regards to the connection between erythema multiforme and lymphoma. January of this year I had a severe hypersensitivity reaction to clyndamycin, (which was prescribed because I had a large lymph node in my neck), went to urgent care walk-in where they stated it was erythema multiforme. Fast forward, I was finally diagnosed with NHL this July, but will be going for second biopsy this week to determine sub-type. Thank you for reporting this info, I would never have known the connection..
For a year and a half I went from athlete to gained a lot of weight which was odd, panic attacks when sleeping, no stamina, felt mentally distant, couldn't speak well I would see the word but hard time saying it, legs swollen, barely could walk at all, needed a cane and I was ignored by my primary. Well in end of April this year I barely could breathe, center chest pain and ribs were swollen on left side. Went to the hospital, and the NP diagnosed me with extensive pulmonary embolisms at 36. Turns out bc of my autoimmune I have lupus anticoagulant blood disorder and with my two Injuries. I have 40+ pulmonary embolisms in my left lung and 12 in my right. They never seen someone live threw what I'm going through. They all couldn't believe it. My sheet will to fight and live that I did live. I was diagnosed 2 days before my son's 17th birthday. My boys were devastated. I told them boys I got this. I will do everything I need too. My oldest son did a report bc school asked him to right about your hero. He told them my autoimmune story all the near death and even pulmonary embolisms journey and was awarded for his story. My autoimmune doctor saw me after being diagnosed and hugged me and said your such a bad ass lol. He was like your still fricken happy and positive. I said God gave me a chance to live. All my major city doctors said they researched and said only during autopsy they find what is wrong. They said you have dozensssss of blood clots and you go to the gym work hard and push to heal. They told me that will take over a year or so for blood clots to be absorbed into the body again. They said working out helps blood flow. So now I go to the gym 6 days a week. Push hard and I'm just so grateful I got to be alive. My doctors are trying to figure out if anyone lived from as many as I had. They all said nope. I'm the first world wide to have 60+ blood clots total and didn't need surgery and still doing 15,000 steps a day gym said teen boys and never gave up. He said hold your head high! And keep being the fighter. I still have the clots was 2-3 months ago and I thank God and my grandma who passed away for saving my life. Anything is possible just don't give up❤❤
Wow. How hard you had to work to get a diagnois! God bless you, thank you for sharing & I am Sending you healing thoughts and prayers
I can totally relate. I had Acute Myeloid Leukemia and I now have donor derived Chronic Myeloid Leukemia. The medical system is so broken. You 💯 percent have to be your own advocate if you’re going to have a chance at surviving. It also helps if you always have someone that cares about you there at Drs visits and hospital stays. They caught my leukemia through bloodwork. Like you, I also knew there was something wrong. I was extremely tired. My friends also said well, you’re a single mom working a full time job. Always trust yourself and your gut. ❤
Nicole, you tickled me as you shared your story! You were so animated and real! I pray that you are doing well. Blessings 🙏🏾
I had a similar story!! I was diagnosed with non Hodgkin lymphoma 2017 at age 45 and had a chemo treatment out of 6 they wanted to treat me with. Before my 2nd scheduled treatment I went on a cleansing regime, lots of prayer and refused anymore treatments and gave my body a chance. I figured after 3 years that it was an infected tooth that I refused to remove as it was in my front teeth and after removal and then first chemo session the blood work was back to normal. I know it was that tooth and my body so unhealthy that caused it. I’m so happy I took my life into my own hands and did not trust that system. I’m going into 6 years and still no issues.
I just read something about teeth infections and the toxicity going into the body. How did you find out after 3 years that it was the tooth ?
Ps I really need to change my yt name… evalicious24 smh now 40 looking back at 24 naming myself that hahah
Infected tooth was reason for lymphoma ?
Crap.
What is the sub type of non Hodgkin's lymphoma is yours?
This really touched me and brought tears to my eyes because I am just starting the journey of trying to get answers and having suspicions. Ive had loved ones and doctors that thought I overreacted. I lost my job because i had to go to an ER (i also had an infection and came very close to sepsis) and had missed too many days being sick and clearly the brain fog at work wasnt helping or the pain. Even my dang car broke down when I was trying to go to doctors and had been misdiagnosed for over a month (still ongoing) and we have had huge bills rolling in. Feeling alone, worrying about my child because Im the sole custodial parent, worrying about the debt ontop of not being listened to. It will just knock you to your knees. Theres no feeling like this. But to have another beautiful, intelligent, self advocating and educated mother that is saying she got brushed off too, brings me comfort in knowing that sometimes we do just know when we dont feel right and sometimes we do have to wait even when we dont want to- but we are on the right track. It just brings me peace to know im on the right path. Im only 25.
🙏🏽🙏🏽🙏🏽
Well I just got out of the hospital 42 days. I went in to get my first chemo treatment for stage 4 large B cell i have a 23cm mass in my abdomen. I went in to tumour lysis syndrome my pic line got infected. I went into a Delusional state and declined over the next week. I developed Pneumonia and my right lung collapsed. I was moved to ICU and put on a ventilator for 10 days. At its worst they told my wife I had a 10% chance of making it. I am now home I lost 44 pounds and am so deconditioned I have to learn how to walk again and do intense physo all while continuing my chemo. I’m getting Chop-R with a biological. Over 8 rounds, I’m going in for my 3rd round in 4 days. I pray I’m not going through all this pain just to have the cancer take me out. Thank god for my rock of a wife she has taken care of me and I could not have made it without her.
May God bless you and heal you💚
Health, healing and long life to you.
thank you SO much
Be thankful that you are younger. My dad is 86 and because of his age they won't even touch my dad for a biopsy. They said he has lymphoma but we have no idea what kind. They won't do anything for him but keep him comfortable. So we are in the long good bye. We have no idea if it's weeks, months, or years. It's hard to watch him become so much less than he was.
Omg! My dad is in the same situation. He’s 89 and all I see is pity from the staff but nothing is being done.
@@vg6790 it's awful!
I’m had a very similar story. After having my 3rd child, I didn’t bounce back. My doctor said I had 3 kids under the age of 4 & was supposed to be tired. When it didn’t improve, he prescribed Prozac saying I had postpartum depression. Soon after I developed a very itchy rash & a relentless dry cough. Derm did a biopsy that showed “non-specific inflammation.” After 3 months of a cough that never responded to medications, he never ordered a chest X-ray. In the middle of the night I couldn’t stop coughing & drove myself to the ER. A chest X-ray was done immediately which showed 2 bake potato size tumors in my mediastinum. Bloodwork, scans, biopsy showed Hodgkin’s disease, stage 2B. After the diagnosis I was actually relieved that I finally found what’s wrong & I wasn’t crazy! I had surgery/chemo/radiation & have been in remission. I changed doctors & luckily, she follows up w/ every new symptom I experience. Maybe too careful, but with my history, she wants me to feel confident. Sorry you had to go on this journey & I wish you the best!
This is absolutely insane. Our healthcare system is absolutely nuts. I didn’t realize how bad it is until my mom started showing signs of Parkinson’s disease. The amount of Drs she has to see, and the frustration and anxiety she is going through is unreal. I can’t imagine having CANCER and going through this. Just unbelievable!!!
I love her and her energy.
I wish the best for you and your family.
You're a strong person & you're going to beat this. Don't loose hope and keep your faith. Go to church and pray daily.
This is me described so well by Nicole’s story. Except I am 55 years old and I have been sick with a panoply symptoms for 2 years! I have been under treatment for anxiety and depression for 20+ years. I know it’s not anxiety. Something is wrong: fatigue, rashes, vertigo, bruises, tinnitus, blurred vision, frequent infections and 2 falls for mo reason. I have seen ENT who sent me to neurologist. Had standard cbc, etc. tests, brain mri, eeg. All ‘deemed’ normal or with blood work that has flags for high or low levels called ‘ok’. I’m waiting to schedule home sleep study but I’m so cynical because I am not someone who goes to the doctor for any little problem. My quality of life right now is low. I don’t know what to do with limited resources/insurance but follow doctor’s advice and keep trying various things
Same. 55. Three years. Nothing but medical gaslighting and "normal" bloodwork. I'm going to die before anyone listens to me.
wish u the best❤❤
@@sbrooke210 I take your prediction ( which is one I make all the time) and use it to get angry enough to keep pushing, trying no matter how long or how many doctors, tests, etc. I have to endure (pay) for. So while I think it is highly likely I WILL die before getting proper diagnosis, I will not do it quietly. I will not do it politely. I will not do it invisibly.
Sounds like CIRS perhaps? Have you been able to rule out mycotoxin related issues? I ordered a book called Toxic by Dr Neil Nathan. You might get your answers there
@@michelecapriotti4412 I don’t know anything about mycotoxins or CIRS but I’m happy to research. And I have not ruled anything out including the air in my apartment.
You're a real character ❤wishing you a long and happy life ✨️
I hear you. You are going to get through this, I can tell. Your mindset is the most important thing, you need to believe one thousand percent that you’re gonna be ok and that will happen. Believe me, I ve been there. Go girl you can do this, keep positive , I m thinking about you
A functional medical doctor finally helped me with my Histamine Intolerance diagnosis. He saved my sanity.
Also, please feel for every cancer patient who has to wait so long before they start treatment. How horrible! We never had to experience that. When my son was diagnosed with leukemia in 2019, he was so poorly off that ue was admitted to pur Childrens hospital and diagnoswd right away. That was scary, bit on the flip sode, they were able to start treatment within 24 hours.
I was just thinking of taking galleri test, told my mom and wife and seeing this confirmed I want to take it
It is horrible the bs hoops you had to jump through and all the legwork you had to do. That is insane I hope you have a full fast recovery ❤️
You are my hero. I want your attitude.
I don't get why Drs don't consider rashes more serious and take them into greater consideration. I just saw a dermatologist for a rash all over my legs, back and arms and she refuses to do any blood tests - even though I've had it for 3 months with no known trigger! When your skin is freaking out your body is trying to tell you something is up! Why won't doctors listen?
Doctors are mostly idiots. That is why.
Doctors are people.
In my vilage 2 doctors where so bad at college. The dads payed their diplom. Go figure.
Because 99% of doctors suck
You have a right, from day one, to know everything about what's going on with your health. I admire your bravery Nicole, because you are like informing people to always get checked and be demanding, when it comes to ones body. I hope you have a full recovery and many+ years to enjoy your life with your family. God bless you. 😊👍💛🌹🌹🙏
You are so funny. I'm so sorry you have to go thru this. The way you put humor into your story cracks me up. Seriously I wish you all the best. Sending you love and prayers.
Thank you for being so cool and understanding where I come from
Infuriating that it’s so difficult to get testing especially when you feel crummy and the last thing you want to do is fight.
Never had a problem geting tested its that they dont answer anything
I also had to fight for several drs telling them 😅 knew i had lymphoma. 2010to 2013 had hodgkins nodule on top of leg near groin. Finally found in canada when i moved here. Stage 2a. 10 yrs remission today 2023
Praying for you and your family 🙏❤️
Best of everything to you young lady! Love your outlook and enthusiasm and vigor! Keep it up!❤
That rash looks like pityriasis rosae , which is says to be connected to Hhv6 reactivation . Hhv6 is found often in Hodgkin’s lymphoma
Yes Nicole your vibe is really cool and I feel like I’m listening to myself when you were telling your story. I know I have to be assertive, advocate for myself, keep medical journal to better (hopefully) describe my symptoms and detect any patterns. I’m a teacher and have missed a lot of work because of this whatever this is.
❤
@@followingbluebird You might be surprised at how much a little heart emoji from a stranger can do to uplift spirits. Thank you! But most importantly, I have not been diagnosed with cancer (yet) but chronic illness and still no answers or ‘overall looks ok’ answers are so frustrating I want to give up trying but something is wrong. I feel a little guilty complaining about doctors NOT finding anything to people who are going through all of that PLUS actually have cancer. I wish you all the best.
@@Sheloyigamer I 'm going through the same for a while now. I gave up, and realised they would only take me seriously when I had something "palpable" to be investigated. Then, I recently found a lump on my subclavicular area and I'm currently under diagnosis process. Biopsy was inconclusive, waiting for the MRI results because my ENT doc doesn't want to do surgery without being really necessary. I'm relieved that I'm finally being listened, but I'm still afraid they will say that there's nothing, when I know something is wrong. Hope you can have a diagnosis soon.
@@dr.alinexavier4135 thank you! I have given up twice in 2 years but I cannot live like this indefinitely. So as weird as it may seem to some, people like us WANT a diagnosis but we don’t WANT a disease or illness. We know we have some kind of illness or disease already. So I understand the constant fear of ‘normal’ test results and endless illness. Even your biopsy of a lump yielded inconclusive results so more tests. I hope, as well, that you will soon get a proper diagnosis, treatment and freedom from the pain of not being believed, being dismissed while you know something is wrong. My brain mri was ‘normal’, my EEG was ‘normal’. The ENT conducted VNG test to determine type of vertigo I was having. The results show my vertigo is of central nervous system dysfunction not vestibular. Neurologist has yet to find what is causing the central vertigo. Best wishes for answers and better health
@@Sheloyigamersending you some love and warm hugs ❤
Absolutely Love your personality& am so grateful you finally got answers(it should not take so long- many people died during covid-not from it- because they could not be seen) Praying for your complete recovery❤.
I'm going through the LONG part where labs are even crazy. Tumor markers High..etc.(Insurance still won't pay for PET SCAN the doctors want 😮
MRI & CT scans etc. even endoscopy didn't show Chronic pancreatitis with atrophy & Cirrhosis. Splenomegaly.
I have been getting worse doing test after test after test. I am drained from all the doctors that are suppose to help ,but even with proof that I need extra help they still do not want to pay for PET SCAN or dig deep. I have been feeling So bad(pain) for so long & it's like they don't really care(they do not) anymore what is wrong. As long as they can get $$$ for unnecessary procedures......So frustrating.
I’m sorry for you’re experience for what you’re going through. Wishing you all the best.
Nicole! Thank you for sharing your story.
Doctors need to stop blaming anxiety!!!!! Can you imagine if you couldn't get that functional doctor? like the majority of us can't. And we're not all capable of fighting. MILLIONS of us get pushed away with many many symptoms/ signs/ abnormal bloodworm everyday.
I wonder if men's concerns are labeled as "anxiety"?
Excellent helpful video. Thank you so much and God bless you and keep you safe and healthy 🙏 ❤️
God Bless you you are a warrior. So proud of you.
Beautiful woman God bless you …..I am sooo sorry you going through so much …
My other issue as someone who has not been diagnosed with cancer or anything really is that I even gaslight myself about my health issues. But then I see the rash, feel the pain, see the bruises, can’t get out of bed, and unable to function 90% of the time for 2 years!!! Something is wrong. I’m not just anxious or maybe it is all in my head???? It’s a miserable and endless loop.
I'm right there with you. Medical gaslighting is absolutely real
please advocate for yourself and demand answers!
2 new movies out… “Im not crazy, I’m Sick” and “The Quiet Epidemic”.
@@HighFiveFriend thanks!
@@sbrooke210 Your post screams Lyme/TBD. Pleaseeee watch and lmk. Most people never knew they were infected not get a rash. Tests suck. I can er you more info if you score high on the screening. Much love 💚 Sandy
Sending you so much love and light. ❤🙏🏽❤️
This just appeared on my TH-cam page. It's kinda random too. But I was just diagnosed with B-cell Marginal Zone non Hodgkin's lymphoma Oct 14 2024. This is all new...I'm so sad,... literally every emotion possible, but with my busy life I really have broke down like I should. It's difficult to watch these videos because I'm scared but I so appreciate these stories shared, everyone is a so brave!!
I was just recently diagnosed in Aug with Stage 4 Hodgkin’s after trying for two years to get someone to look further into my symptoms. It took switching my pcp, hardcore self advocacy and doing a diagnostic mammogram on a swollen lymph node to get it. Now I’m in treatment and have my midway PET scan on Thursday to see if it’s working
Best wishes and keep up being the CEO of your health!
Thank you for sharing your story. It is crazy that we have to fight not only for our health but more so that we have to go to war with the system to be cared for medically. You are amazing ❤