Hello Mr. Lier. Just finished watching your video - it's as if you were describing my own 2-year journey of going from active, healthy senior to now living as a docile introvert in a self-imposed exile. Fortunately, I was able to convince the VA to test me for Amyloidosis AL. Bone marrow and fatty tissue biopsy results are due this week. I thank you for providing me with a renewed sense of hope and inspiration. Should my results come back positive, I will pursue treatment at the Mayou Clinic in MN. May God bless you and keep you and your family safe. Semper Fi! R/Manny
Very nice talk, Dan. I am a fellow patient with a story like yours. The irony is that besides having a diagnosis of light chain amyloidosis (AL) with major cardiac amyloid, I am also a HemOnc physician. I continue in my medical practice as a consultant but with a focus on prostate cancer. Now with my diagnosis of AL, I have read over 1,000 papers on AL and am pretty much directing my own therapy along with 3 angels: Michaela Liedtke of Stanford, and Angela Dispenzieri and Martha Grogan of the Mayo in Rochester. I know you were at the Mayo as well. Perhaps some time we can talk. Stay well. BTW, I have the translocation t(11;14) and opted for venetoclax (Venclexta®) and have had a major improvement in my serum free light chains (sFLCs) and cardiac biomarkers along with ↑ stamina and exercise tolerance. Stephen B. Strum, MD Nevada City, CA
wow... I also had 11;14 translocation and I am on Venetoclax as well. 400 mg per day. That's incredible about your markers and increased stamina. I'm working on moving in that direction. Thanks for sharing
Dan: my wife has been following your TH-cam reports on your diagnosis and your treatment for some time. She received a diagnosis of Cardiac Amyloidosis a bit over a year ago, and given the rarity of the condition, it's been very helpful to her to be able to follow your reports. She just told me that you were not doing so well at present and how badly she felt about that. She sends her thanks and her regards, and wishes for good health for you. She is, so far, stable in her condition with the chemotherapy she's undergoing and would wish the same for you.
Ok Dan....my dad... was riding bike 13 to 16 miles every other weekend with my sister and I he was healthy and fine suddenly his breathing wasn't right..... Long story short he's been diagnosed with amyloid congestive heart failure.... I'm following you now I've gone to Google college and educated myself on the amyloid protein. My family lives here in Minnesota I understand that you are going to the Rochester Mayo Clinic. I'm continuing to go to Google college and learn as much as possible about this and what we can do for my father he is older and his late seventies. I'm not looking for a miracle I'm looking how to help him be comfortable for the remainder of his time here. Your videos are an inspiration period starting with your youth and that this is something that you can live with the sander stand and I'm learning everyday thank you for putting your story out there. It's made a difference and my family's world. God bless you and yours in your journey I will continue to follow you.
thank you Sharlette. Sorry I didn't respond earlier. For some reason I missed your message. Mayo clinic in MN is the absolute best. Yes, the amyloids really change the heart functionality very quickly. Getting to Mayo ASAP and being in a POSITIVE environment is key! Please keep me posted. I'm sure by this time he's already been to Mayo or somewhere.
@@DanLier Hi Dan, thanks so much for replying. I have been following since the early days of your journey. I’m so glad that your treatment has worked so well. Keep it up, sincerely.
My active hubs diagnosed with AL Amy - kidney involvement -last June- immediately on 6 cycles of gold standard chemo treatment (24 weeks)… brought his serum chains down but not his urine protein- fast forward scheduled for ASCT at Moffitt Cancer Tampa 4/22/24- low to moderate cardiac involvement discovered at Moffitt but oncology cardiologist confident that hubs is good candidate. Prayers to you Ronnie--keep up the encouraging spirits and spreading the word - send prayers to hubs Jack as he’s about to undergo quite a courageous chapter in his story!!! Keep smiling ❤
Dan, you are in my thoughts each day and my prayers each night and I salute your choice to log this path you are on as it is an inspiration to all! God bless you and keep rocking it!
Thank you Dan for being one of the pioneer patients with Amyloidosis that is brave enough to document their story kudos to you! Healing vibes & prayers from the UK.. I’m just learning all about Amyloidosis as my specialists want me to be tested for this next with 3 organs that have failed, neuropathy, autonomic dysfunction along with some markers in my blood showing possible issues with bone marrow. I’m speaking to my GP about the next steps of the process a referral to the UK centre of excellence for Amyloid The Royal Free Hospital in London, to enable me to embark on the relevant in depth testing I will need. Scared and nervous at this point but it’s the unknown that I struggle with. Knowing what I’m up against I can deal with it I’ve already had 37 surgeries in 10 years suffer over 15 other conditions including Lyme Disease and an array of other maladies, I’ve also had HPV SCC cancer fight ongoing as well. I try to stay as positive as I possibly can sadly physically I’m in such poor condition when I was otherwise fit, healthy and looked after myself able to carry on with my career until 2010 as a Human Resources Consultant, when I became too unwell to work. I live with hope that one day I can return to work and give back to others by way of some form of service. Stay strong keep fighting 💪🏼🌈♥️ Thank you for your channel.
Wow Joanne... you've had quite a journey. You are a warrior! Thank you for your kind words. Well, I hope your diagnosis comes back with NO amyloidosis, yet I'm glad you were able to find my video diary and I hope it helps. Please keep me posted. - Dan
Thanks for this. I'm looking into this as my potential diagnosis. I have taken a lot of blood and urine tests with the hematologist. So far I have high IgA (over 450) and M protein but no diagnosis. I'm so tired of the tests but I've lost lots of hair and 25 pounds in half a year despite eating more than average. Let's just say I have 3 meals a day and 2 desserts a day. I sure do hope I have the right hematologist. I'm getting a second opinion anyway, but your video has inspired me to push for a proper diagnosis. Thanks again!
About 2 years ago my brother in law was diagnosed with this after several misdiagnoses. It degraded his heart and he went to a doctor at Yale New Haven. They wanted him to have a "life vest"... but Medicare refused it. He was given a pacemaker and chemo. Sadly, he died just over a year ago at home after steadily becoming weaker, despite "the best" doctor and treatment. It may have been diagnosed too late for treatment to begin with. He was 77. I hope they have a better handle on this disease and can detect it earlier today.
Hi Dan, thanks for the informative video and your inspiration to help other people. My brother got diagnosed in 2016 after a year of the doctors being baffled at his symptoms, and he also has had juvenile diabetes since he was thirty and he's 62 now. He finally stopped chemo and all's he does is sleep. He wasn't eligible for a stem cell transplant cause they didn't think he would survive it. It's hard because the diabetes complicates the hell out of it. I think he's giving up. If they would of diagnosed him earlier, he could of got the transplant. We love him dearly and it's so hard for my family and his kids to see him go through this. He lost his house and obamacare went up to 800 a month and they dropped him. He was a regular patient at Brigham woman's in Boston under care of Dr. Falk who supposedly wrote the book on Amyloidoses. I'm wondering if your doctor and hospital would make a difference, but maybe he's too weak to even get there. He's suppose to get some other kind of insurance, but not sure yet. Thank You for listening to me vent. You look like you still have alot of energy left in you. Keep up the good work.
So sorry to hear about your brothers situation. Yes, I'm sure it would have made a difference if he had been diagnosed earlier. I do have solid energy, which I am grateful for. If you could get him up to Mayo in Rochester, I believe it could make a difference. Thanks for reaching out.
Hi Dan, kudos to you for documenting your journey. My Husband Kevin was diagnosed with Multiple Myelomia on 9/20/15, which was also his 54th birthday. Then diagnosed with Amyloidosis in August of 2016, after almost 2 years dealing with MD Anderson Cancer Center, with no treatment plan, he finally agreed to go to Mayo in Rochester, MN. Kevin had his SCT on 4/9/18. Went back for his 100 day checkup in June 2018. He has 25% still in his bone marrow and will begin Revlimid for the upcoming year, we will begin the cycle this coming Monday, 8/13/18. Mayo has asked us to come back for tests in 6 months. You are in our prayers. We lift both you and Miss Jennifer up in prayer, multiple times daily. Sincerely, Shawnua & Kevin
Thank you Shawnua. I appreciate your prayers for us and we will be sending you and Kevin some healing vibes as well. I'll be thinking of Kevin for sure.
Dan Lier, I thank you. Out of curiosity, do you have only Amyloidosis? Believe me, I realize it is enough a challenge on its own! However, the Specialists advised MM and Amyloidosis will occur together at times.
hi Dan I was diagnosed with macular amyloidosis five years ago. My family physician sent me to a skin doctor because my skin was getting dark and I'm light-skinned. I had a biopsy and the doctor told me my amyloidosis was skin-related only and you have to have a biopsy each one in the family to find out if there is organ damage or skin. I'm glad I went to the dermatologist, but I'm still trying to deal with the darkness of my skin. Thank you for your video and others who have responded because I thought I was the only one.
Thank you for your information. The dermatologist suspects I have Amyloidosis. I am waiting for the results of the biopsy. I have Mixed Connective Tissue with the main one of 3 illnesses, Lupus, as well.
i live in vegas now. my hematologist is 70 to 80 percent sure i have amyloidosis.. i will be HIS first case. he is in his 70s. i am going for fat pad biopsy in two weeks..the left side of my heart is big and i am on oxygen..the right side of my heart is tired they say. im 47. they say the pulmonary hypertension can be reversed, if they can keep me alive til they get done with all the testing.. my liver is large, my pancreas,, my usutus is large, even my tongue is bigger.. i was playing tennis 7 days a week, twice a week and taking tennis at mohave college twice a week.. i was a stout 140 lbs. all muscle..and one day i just returned a ball and collapsed, i didnt see it coming.. i just couldn't get off the court.. my friend drove me over the clinic.. and began a 11 year journey of "perfect health" tests.. docs saying everything was in my head.. instead of getting skinny tho i got fat.. as the years flew by, all the docs just kept saying im fat and all my tests r good.. my husband left (He was sick of my in my head sickness) i lost everything i owned, lived in my van, lost my disabled son with severe non verbal autism.. he finally had to go in a home.. i was put on oxygen for "idiopathic h heart arrythmia and hopoxia " and inderal the last 4 years.. eventually they found kidney cancer tumor and they thought "oh heres you problem, " they got rid of the tumor and nope, i was still sick.. finally, my organs got so big.. my abdomin is big, thing is, i kept telling them the last 11 years.. theres something big going on.. so many radiation tests and they missed the ever growing organs.. this sucks. even my skin has gotton too thick.. take care.. im at the beginning.. my cardiologist and new GP also believe its amyloidosis..
I hope the test come back negative... yet if they show you have Amyloidosis, it's best to go to the Mayo Clinic in AZ. Not a positive experience here in Vegas... Please keep me posted.
@@DanLier hey thanks for replying. so, im on medicaid. not sure i could afford to go to mayo however after watching your videos 5 weeks ago, when i get my backpay from disability im seriously considering buying a camper van so i CAN travel to scottsdale and get treatment.. i guess i'd have to stay in their parking lot.. but im wiling to do anything to stay alive. im actually a spriitual person and have always said, im ok with death.. and i am.. but TWO things are strong on my list about that A. PAIN and B. my severely disabled adult son in a special needs home (something my sickness made me finally do as i had not strength to care for an 18 month old toddler adult).. HE is my best friend and he would never understand being alone on earth. it was already horrible what he went thru going into the home.. convincing him he was a man and all grown up and this was his NEW big boy apartment wasn't sitting well with him. anyways.. they have masters of education there and in time, he will understand better.. i want to live until that happens at least. i was so happy in my former life.. tennis twice a day 7 days a week.. i lived for the physical engagement.. it felt like i was hulk .. when anyone needed to move furniture I WAS THEIR GIRL.. i could lift couches and dressers like nothing.. i would park far out and walk, take the stairs, worked two jobs... i just felt like hulk all the time (a girl hulk).. when first listening to your video it sounded identical to me? that got me thinking last night... perhaps this disease puts us thru an aggressive physical stage... maybe there is a period of muscle strenthening a sudden boost or such? an adrenal push.. i don't know.. but i can surely tell you, i was not going to the gym but you couldn't tell... anyways.. i do have a genetic anomoly.. i was born club footed and it was corrected after birth.. i was told they found a marker for trisomy 13 in my placenta when i was pregnant with my son.. they originally told me all his organs would be developed on the outside of his body and he would live a painful 9 minutes after birth and die.. they suggested i abort him at 4 months pregnant... of course being a spiritual person i couldn't do that.. i felt he needed a chance and if your mother doesn't give it to you.. then your really screwed.. so i prayed about it and let it go.. i just got his room ready etc etc.. at my 8 month hi risk delivery sonogram appt the doc was shocked that the baby looked ok.. he couldn't find anything wrong and asked me what i'd been doing.. we realized 2 years later little Jake had autism, very severe non verbal ... but that was ok, he was so cute and fun.. we were glad to have him in our lives.. anyways.. im getting symptoms so fast now for amyloidosis.. and all the perfect blood tests i've always had are starting to turn ugly.. something about neutrils, red blood cells, i don't know and more.. doc said its one of three -luekemia, myeloma or amyloidosis and i have 4 more symptoms of amyloidosis and now in just the last week, im severely anemic and my boughs are acting so horrible... ive never ever been anemic.. i've always been the opposite, too much iron, they called it polycenthemia 15 years ago. when i moved to the mountains in utah from florida (no im not lds but i have nothing against them, they are so good to people) the polycenthemia but my leg pain that had just started in florida was incresasing.. and that and the collapse at the hurricane utah tennis court in southern utah.. began the worst 12 years of my life.. sometimes, i wanted to punch my doctors when they acted like everything was in my head.. i hated my body.. som many times i wanted to give up.. i need to take care of my responsponsiibilities and my body was deliberatly making me look so lazy and useless. my husband leaving took the cake, he honestly is a good dude.. so when he lost faith in me... that was so troublesome. smh. ( your beautiful wife staying by your side is so awesome buy her flowers all the time !!! )... she believed in you.. thats worth a 100 bouquets. so anyways, im sure your eyes are crossing from this long letter.. im just so thrilled theres another human on earth that knows what all this feels like. (they put me on a new medication and i think its making me do this chatter box thing), my new docs here in vegas (and i fired two along the way) are elderly and so kind and it was the cardiologist (shes from russia i think) spotted 5 weeks ago after my PA sent me to the hospital bc a routine ekg in his office showed a recent heartattack.. he told me to go to the ER.. after i got there i got all the usual stuff " theres nothing wrong with you, everything looks great, why are you here, your docs office ekg is just wrong" and i started crying, i fell apart infront of all those people, i said, i cant do this anymore, yall just won't find whats wrong and i cant walk to the back of the store to get milk with out seizing in chest pain my jaws burning.. no one will even try when i am at a place like this with all your big machines... and the ER doc devided to admit me.. then the floor docs upstairs were mad at him b/c they didn't know what to do with me.. so they ran a plethora of heartt tests that all came back fine and on the 3rd day the discharge doc came in and said... " im sending you home, you can follow up with your GP .. " he walked out and i was getting dressed when this little old lady walked in and said "what are you doing? im keeping you and im the cardiologist.. i told her what the floor doc said and she said nonsense, is he a cardiologist! and then i said well he said my tests are fine.. and she giggled and said, i know he told you that.. but, all your test have a little this a little that -nothing big.. just on the lines here and there.. so they say "shes fine" but i read all those test like a book and i say you are very very sick and i want you to know "i believe you that you cannot breath and feel like you are having a heart attack all the time".. --- this was the greatest moment in my life.. she said, i am sure you have pulmonary hypertention but we have to run the tests but we also have to find out why you have it.. and i will give the doctor a heads up that so many of your organs are showing enlarged.. that is not because of weight gain! the weidhtgain is because of that!.. she had her suspicians.. then she got a hematologist on board too.. over at the cancer center.. so i would love to hear what it was they did that you didn't like so that i don't get mistreated too.... i was told fat pad biopsy might not show amyloidosis either, so they will have to do colon biopsy then.. and i guess, there really isn't another disease that does what this is doing and is why the hematologist is really starting to feel confident its amyloidosis, unless i have convieniently birthed a new disease. thanks.. again, if you could tell me what they did in vegas that messed things up for you.. if i can't afford to go to scottsdale or if medicaid doesn't pay for it,maybe i can get a mayo doctor to talk to mine after i officially get the diagnosis... i just know i need to live.. i also have a fear that my jake has amyloidosis.. he has some of my early health issues.. my poor baby.
i don't know why there is a line in my paragraph.. i was going to write all my thoughts then click edit, repair all my sentences and summerize more and create paragraphs.. but i don't know if i want to mess with the post now.. i usually have to edit.. its what long winded ppl should do.
Hi Dan, I shared similar symptoms to you including shortness of breath, enlarged heart muscle, swelling in my lower legs, heart failure, kidneys releasing proteins and gastro intestinal issues. In Australia we have the standard level of care, also used to treat multiple myeloma and mantle cell lymphoma, which is 1. Dexamethasone to reduce the immune system effects, 2. Cyclophosphamide to attack cancer cells, or the misfolded proteins being produced the immune system in the bone marrow, followed by a stomach injection of 3. Velcade which is used to slow down the cancer cells from growing. I am also part of a Drug trial for Amyloidosis, which pays for the above treatment and provides either a placebo or CAEL-101 for testing, which is a fibril reactive monoclonal antibody via infusion every two weeks. My bad numbers have been reducing, and over time the body with dissipate the misfolded proteins which have infiltrated my affected organs and reduce the effects. They also take bloods every visit to check my numbers, undertake and ECG and and Echocardiograph to gauge the results of treatment, plus a walk test to gauge my shortness of breath. Bone marrow biopsy is a treatment but I did not follow that route. I would be interested in hearing about your hopefully reduced symptoms. Cheers.
Hi Murray... yes, sounds so familiar. It's been almost 6 years now since diagnosis. Take a look at my other videos on the channel and you'll see progress. I'm doing well... still getting tested every 2-months. Stay positive Murray... that's why I'm still enjoying life! 🔥🙏
Hi Don. You just described complete my situation. I have been diagnosed amyloidosis but they don’t know yet what organs has been affected but I have proteinuria and I think my liver is enlarged. I live in Northwest where they are no specialist by my knowledge. Can you send me your doctor contact info?
My mother has Amyloidosis. Make long story short she is slowly dying cuz the doctors said they can't do nothing for her cuz her heart is at 35%.😭😭😭she is so weak, don't talk, eat.😭😭😭
@@MyTechniqueWorks my mother passed away January 20, 2020 due to her condition. The doctors couldn't help her so she was on Hospital care Hospesl care. 😭
@@yukdhall1 I'm so sorry to hear this, but I heard Planet Ayurveda maintains this disease very well and also Green Tea. I'm so sorry I know it's very painful I still can't forget my father it's been 30 years but feels like happened yesterday
Great video… I recently viewed a video with you explaining a symptom of amyloidosis. The symptom I’m referring to is bloated stomach and Bowl problems. I believe you were heading to the mayo clinic and hoping you would get some information on what was going on with your stomach. I’m curious and wonder what they came up with as a solution or a medication for this very uncomfortable symptom. I am currently being seen by a great doctor at Cedars Sinai and he’s doing a wonderful job. Monday, I have an appointment with Dr Vescio and would like to give him some information if you have any from a past visit you went to. This has been bothering me for about a month and I am now doing a follow up and would really like to get this under control, I hope you have. Thank you in advance, Dan if you can help me out it would be greatly appreciated. I haven’t seen any updates for a while and I’m praying that you are back at your best and continue motivating people on a daily basis. Sincerely Kent Reed
yes I did have night sweats. My heart was becoming less effective… couldn’t get up stairs, or exercise. Bone marrow biopsy and fat aspirate at the Mayo Clinic in Rochester, MN. I live in Vegas and had seen “specialists” for two years… yet they were clueless.
How do I get in contact with you to see who I can see there to get tested? I’ve been to mayo but they were not successful in diagnosing me a year ago since then I’ve seen doctors all the way to UCLA and they still aren’t sold on the 3 genetic disease they think I have one is related to amyloidosis and my doc here still thinks I might have cardiac amyloidosis but I don’t “fit” the profile.
Sorry Kate, I just saw this. I wonder what profile that is? There is no profile, since MANY more people have it than realize it. You can connect with me on my website www.DanLier.com (go to "contact Dan" tab) or on my FB Amyloidosis page (on messenger). facebook.com/danlieramyloidosis/
Hi dan o really need some personal advice , my dad was diagnosed with progressive amyloidosis and refused any treatment, he’s been put an palliative care and basically left to die he so swollen with water he can’t move, as a family we do not no what to do can anyone give any advice who has dealt with amyloidosis
Hi… they were considering it, yet i was too weak. So, no… I didn’t do it. What are they suggesting for him? How old is he, and what type of amyloidosis does he have.
Very good video! My brother, who is 70yrs old was just diagnosed with Amyloidosis after a fat pad biopsy. He, like you has been into fitness, nutrition and natural vitamins all of his life. He is quite shocked with this diagnosis. He and his wife have always treated themselves with natural herbs and vitamins all of their lives and have never relied on any pharmaceuticals. I am sending your video to him as I also encouraged him to go to Mayo Clinic for their opinion. I wish you the best on your journey to wellness. Any suggestions would be appreciated. Thank you
Thank you Stacey, and I'm sorry about your brother's diagnosis. Yes, was quite a shock for me as well. Yes, please do. They have an entire department dedicated on amyloidosis, along with the #1 doc in the country, Dr. Morie Gertz. Where does your brother live and where did he get diagnosed?
My brother, Chris, lives in Kansas. That is where he got diagnosed. They have not yet determined the type yet. The Dr. called today to schedule a 24 hour urine test and skeletal survey. I guess they want to rule out multiple myeloma. I am encouraging Mayo, at least for the diagnosis and to see what their protocol for treatment is. I guess we will await the results of these tests. Thanks for your response.
I have had several amyloids removed from my eyelids. Up and down in both eyes. As far as I know they are localized just in my eyelids. I feel bad everyday. I have a lot of different doctors but they don’t seem to make me feel better. I just went to a rheumatoid/ arthritis doc today. He wants for me to get more X-rays. Ugh.
Hi, I'm doing well, thank you. On a maintenance drug (Vanclexta) to keep the light chain proteins where they are. Living a "normal" life, without the ability to exercise hard b/c of the congestive heart failure. Overall, doing great!
Hi Terry... Did chemo from 2017-2019, now on a maintenance drug (non-toxic) and I'm doing well. Light chain proteins holding just over the "normal" reading... eating well, exercising and staying positive.
Hello Mr. Lier. Just finished watching your video - it's as if you were describing my own 2-year journey of going from active, healthy senior to now living as a docile introvert in a self-imposed exile. Fortunately, I was able to convince the VA to test me for Amyloidosis AL. Bone marrow and fatty tissue biopsy results are due this week. I thank you for providing me with a renewed sense of hope and inspiration. Should my results come back positive, I will pursue treatment at the Mayou Clinic in MN. May God bless you and keep you and your family safe.
Semper Fi!
R/Manny
Thank you for sharing!… please keep me posted!
Thank you for being so forward with your situation.
You're welcome!
Very nice talk, Dan. I am a fellow patient with a story like yours. The irony is that besides having a diagnosis of light chain amyloidosis (AL) with major cardiac amyloid, I am also a HemOnc physician. I continue in my medical practice as a consultant but with a focus on prostate cancer. Now with my diagnosis of AL, I have read over 1,000 papers on AL and am pretty much directing my own therapy along with 3 angels: Michaela Liedtke of Stanford, and Angela Dispenzieri and Martha Grogan of the Mayo in Rochester. I know you were at the Mayo as well. Perhaps some time we can talk. Stay well. BTW, I have the translocation t(11;14) and opted for venetoclax (Venclexta®) and have had a major improvement in my serum free light chains (sFLCs) and cardiac biomarkers along with ↑ stamina and exercise tolerance.
Stephen B. Strum, MD
Nevada City, CA
wow... I also had 11;14 translocation and I am on Venetoclax as well. 400 mg per day. That's incredible about your markers and increased stamina. I'm working on moving in that direction. Thanks for sharing
Dan: my wife has been following your TH-cam reports on your diagnosis and your treatment for some time. She received a diagnosis of Cardiac Amyloidosis a bit over a year ago, and given the rarity of the condition, it's been very helpful to her to be able to follow your reports. She just told me that you were not doing so well at present and how badly she felt about that. She sends her thanks and her regards, and wishes for good health for you. She is, so far, stable in her condition with the chemotherapy she's undergoing and would wish the same for you.
Thank you Antoine. Please give you wife my best regards. I'll be sending good thoughts.
You're an important wiseman on many people's journeys. Keep on keepin' on, Dan.
Thank you Scott!
Ok Dan....my dad... was riding bike 13 to 16 miles every other weekend with my sister and I he was healthy and fine suddenly his breathing wasn't right..... Long story short he's been diagnosed with amyloid congestive heart failure.... I'm following you now I've gone to Google college and educated myself on the amyloid protein. My family lives here in Minnesota I understand that you are going to the Rochester Mayo Clinic. I'm continuing to go to Google college and learn as much as possible about this and what we can do for my father he is older and his late seventies. I'm not looking for a miracle I'm looking how to help him be comfortable for the remainder of his time here. Your videos are an inspiration period starting with your youth and that this is something that you can live with the sander stand and I'm learning everyday thank you for putting your story out there. It's made a difference and my family's world. God bless you and yours in your journey I will continue to follow you.
thank you Sharlette. Sorry I didn't respond earlier. For some reason I missed your message. Mayo clinic in MN is the absolute best. Yes, the amyloids really change the heart functionality very quickly. Getting to Mayo ASAP and being in a POSITIVE environment is key! Please keep me posted. I'm sure by this time he's already been to Mayo or somewhere.
i hope your dad is ok.. God Bless
Hi Dan, please give us an update on your journey, we care for you.
Hi Ronnie... thank you. I'll do my best to get a quick video released this weekend. Doing well though... so blessed. Thank you! And how are you?
@@DanLier Hi Dan, thanks so much for replying. I have been following since the early days of your journey. I’m so glad that your treatment has worked so well. Keep it up, sincerely.
My active hubs diagnosed with AL Amy - kidney involvement -last June- immediately on 6 cycles of gold standard chemo treatment (24 weeks)… brought his serum chains down but not his urine protein- fast forward scheduled for ASCT at Moffitt Cancer Tampa 4/22/24- low to moderate cardiac involvement discovered at Moffitt but oncology cardiologist confident that hubs is good candidate. Prayers to you Ronnie--keep up the encouraging spirits and spreading the word - send prayers to hubs Jack as he’s about to undergo quite a courageous chapter in his story!!! Keep smiling ❤
Thank you so much for making this enlightening video
You're welcome. Seems like yesterday, as I can remember the feeling I had..
Your videos are a blessing. Prayers for you. You are helping so many.
Dan, you are in my thoughts each day and my prayers each night and I salute your choice to log this path you are on as it is an inspiration to all! God bless you and keep rocking it!
Thank you Rick!
You’ve helped me tremendously with this information. Thank you for posting this channel. I wish you a lot of luck and health.
I have watched all your videos and thank you so much. I am also on a similar journey and your optimism is as good as a pill. Phyliss from Canada
Thank you Phyliss. I appreciate that. If you're comfortable talking about it, what journey are you on?
Thank you Dan for being one of the pioneer patients with Amyloidosis that is brave enough to document their story kudos to you! Healing vibes & prayers from the UK.. I’m just learning all about Amyloidosis as my specialists want me to be tested for this next with 3 organs that have failed, neuropathy, autonomic dysfunction along with some markers in my blood showing possible issues with bone marrow. I’m speaking to my GP about the next steps of the process a referral to the UK centre of excellence for Amyloid The Royal Free Hospital in London, to enable me to embark on the relevant in depth testing I will need. Scared and nervous at this point but it’s the unknown that I struggle with. Knowing what I’m up against I can deal with it I’ve already had 37 surgeries in 10 years suffer over 15 other conditions including Lyme Disease and an array of other maladies, I’ve also had HPV SCC cancer fight ongoing as well. I try to stay as positive as I possibly can sadly physically I’m in such poor condition when I was otherwise fit, healthy and looked after myself able to carry on with my career until 2010 as a Human Resources Consultant, when I became too unwell to work. I live with hope that one day I can return to work and give back to others by way of some form of service. Stay strong keep fighting 💪🏼🌈♥️ Thank you for your channel.
Wow Joanne... you've had quite a journey. You are a warrior! Thank you for your kind words. Well, I hope your diagnosis comes back with NO amyloidosis, yet I'm glad you were able to find my video diary and I hope it helps. Please keep me posted. - Dan
Thanks for this. I'm looking into this as my potential diagnosis. I have taken a lot of blood and urine tests with the hematologist. So far I have high IgA (over 450) and M protein but no diagnosis. I'm so tired of the tests but I've lost lots of hair and 25 pounds in half a year despite eating more than average. Let's just say I have 3 meals a day and 2 desserts a day. I sure do hope I have the right hematologist. I'm getting a second opinion anyway, but your video has inspired me to push for a proper diagnosis. Thanks again!
About 2 years ago my brother in law was diagnosed with this after several misdiagnoses. It degraded his heart and he went to a doctor at Yale New Haven. They wanted him to have a "life vest"... but Medicare refused it. He was given a pacemaker and chemo. Sadly, he died just over a year ago at home after steadily becoming weaker, despite "the best" doctor and treatment. It may have been diagnosed too late for treatment to begin with. He was 77. I hope they have a better handle on this disease and can detect it earlier today.
Hi Dan, thanks for the informative video and your inspiration to help other people. My brother got diagnosed in 2016 after a year of the doctors being baffled at his symptoms, and he also has had juvenile diabetes since he was thirty and he's 62 now. He finally stopped chemo and all's he does is sleep. He wasn't eligible for a stem cell transplant cause they didn't think he would survive it. It's hard because the diabetes complicates the hell out of it. I think he's giving up. If they would of diagnosed him earlier, he could of got the transplant. We love him dearly and it's so hard for my family and his kids to see him go through this. He lost his house and obamacare went up to 800 a month and they dropped him. He was a regular patient at Brigham woman's in Boston under care of Dr. Falk who supposedly wrote the book on Amyloidoses. I'm wondering if your doctor and hospital would make a difference, but maybe he's too weak to even get there. He's suppose to get some other kind of insurance, but not sure yet. Thank You for listening to me vent. You look like you still have alot of energy left in you. Keep up the good work.
So sorry to hear about your brothers situation. Yes, I'm sure it would have made a difference if he had been diagnosed earlier. I do have solid energy, which I am grateful for. If you could get him up to Mayo in Rochester, I believe it could make a difference. Thanks for reaching out.
Dan Lier Thank You Dan, I'll talk to my Brother. I appreciate You and your efforts to help others.
Hi Dan, kudos to you for documenting your journey. My Husband Kevin was diagnosed with Multiple Myelomia on 9/20/15, which was also his 54th birthday. Then diagnosed with Amyloidosis in August of 2016, after almost 2 years dealing with MD Anderson Cancer Center, with no treatment plan, he finally agreed to go to Mayo in Rochester, MN. Kevin had his SCT on 4/9/18. Went back for his 100 day checkup in June 2018. He has 25% still in his bone marrow and will begin Revlimid for the upcoming year, we will begin the cycle this coming Monday, 8/13/18. Mayo has asked us to come back for tests in 6 months.
You are in our prayers. We lift both you and Miss Jennifer up in prayer, multiple times daily.
Sincerely,
Shawnua & Kevin
Thank you Shawnua. I appreciate your prayers for us and we will be sending you and Kevin some healing vibes as well. I'll be thinking of Kevin for sure.
Dan Lier, I thank you. Out of curiosity, do you have only Amyloidosis? Believe me, I realize it is enough a challenge on its own!
However, the Specialists advised MM and Amyloidosis will occur together at times.
That's what they are telling me. I had MGUS, which is a pre-curser to MM. They found amyloidosis. Cardiac amyloidosis.
You are in our thoughts and prayers, T Bongiorno
Thank you!!
hi Dan I was diagnosed with macular amyloidosis five years ago. My family physician sent me to a skin doctor because my skin was getting dark and I'm light-skinned. I had a biopsy and the doctor told me my amyloidosis was skin-related only and you have to have a biopsy each one in the family to find out if there is organ damage or skin. I'm glad I went to the dermatologist, but I'm still trying to deal with the darkness of my skin. Thank you for your video and others who have responded because I thought I was the only one.
you're welcome. Thanks for sharing. Interesting. I'm not familiar with that.
I have the same problem. Is there any treatment for this plz reply
Thank you for your information. The dermatologist suspects I have Amyloidosis. I am waiting for the results of the biopsy. I have Mixed Connective Tissue with the main one of 3 illnesses, Lupus, as well.
i live in vegas now. my hematologist is 70 to 80 percent sure i have amyloidosis.. i will be HIS first case. he is in his 70s. i am going for fat pad biopsy in two weeks..the left side of my heart is big and i am on oxygen..the right side of my heart is tired they say. im 47. they say the pulmonary hypertension can be reversed, if they can keep me alive til they get done with all the testing.. my liver is large, my pancreas,, my usutus is large, even my tongue is bigger.. i was playing tennis 7 days a week, twice a week and taking tennis at mohave college twice a week.. i was a stout 140 lbs. all muscle..and one day i just returned a ball and collapsed, i didnt see it coming.. i just couldn't get off the court.. my friend drove me over the clinic.. and began a 11 year journey of "perfect health" tests.. docs saying everything was in my head.. instead of getting skinny tho i got fat.. as the years flew by, all the docs just kept saying im fat and all my tests r good.. my husband left (He was sick of my in my head sickness) i lost everything i owned, lived in my van, lost my disabled son with severe non verbal autism.. he finally had to go in a home.. i was put on oxygen for "idiopathic h heart arrythmia and hopoxia " and inderal the last 4 years.. eventually they found kidney cancer tumor and they thought "oh heres you problem, " they got rid of the tumor and nope, i was still sick.. finally, my organs got so big.. my abdomin is big, thing is, i kept telling them the last 11 years.. theres something big going on.. so many radiation tests and they missed the ever growing organs.. this sucks. even my skin has gotton too thick.. take care.. im at the beginning.. my cardiologist and new GP also believe its amyloidosis..
I hope the test come back negative... yet if they show you have Amyloidosis, it's best to go to the Mayo Clinic in AZ. Not a positive experience here in Vegas... Please keep me posted.
@@DanLier hey thanks for replying. so, im on medicaid. not sure i could afford to go to mayo however after watching your videos 5 weeks ago, when i get my backpay from disability im seriously considering buying a camper van so i CAN travel to scottsdale and get treatment.. i guess i'd have to stay in their parking lot.. but im wiling to do anything to stay alive. im actually a spriitual person and have always said, im ok with death.. and i am.. but TWO things are strong on my list about that A. PAIN and B. my severely disabled adult son in a special needs home (something my sickness made me finally do as i had not strength to care for an 18 month old toddler adult).. HE is my best friend and he would never understand being alone on earth. it was already horrible what he went thru going into the home.. convincing him he was a man and all grown up and this was his NEW big boy apartment wasn't sitting well with him. anyways.. they have masters of education there and in time, he will understand better.. i want to live until that happens at least. i was so happy in my former life.. tennis twice a day 7 days a week.. i lived for the physical engagement.. it felt like i was hulk .. when anyone needed to move furniture I WAS THEIR GIRL.. i could lift couches and dressers like nothing.. i would park far out and walk, take the stairs, worked two jobs... i just felt like hulk all the time (a girl hulk).. when first listening to your video it sounded identical to me? that got me thinking last night... perhaps this disease puts us thru an aggressive physical stage... maybe there is a period of muscle strenthening a sudden boost or such? an adrenal push.. i don't know.. but i can surely tell you, i was not going to the gym but you couldn't tell... anyways.. i do have a genetic anomoly.. i was born club footed and it was corrected after birth.. i was told they found a marker for trisomy 13 in my placenta when i was pregnant with my son.. they originally told me all his organs would be developed on the outside of his body and he would live a painful 9 minutes after birth and die.. they suggested i abort him at 4 months pregnant... of course being a spiritual person i couldn't do that.. i felt he needed a chance and if your mother doesn't give it to you.. then your really screwed.. so i prayed about it and let it go.. i just got his room ready etc etc.. at my 8 month hi risk delivery sonogram appt the doc was shocked that the baby looked ok.. he couldn't find anything wrong and asked me what i'd been doing.. we realized 2 years later little Jake had autism, very severe non verbal ... but that was ok, he was so cute and fun.. we were glad to have him in our lives.. anyways.. im getting symptoms so fast now for amyloidosis.. and all the perfect blood tests i've always had are starting to turn ugly.. something about neutrils, red blood cells, i don't know and more.. doc said its one of three -luekemia, myeloma or amyloidosis and i have 4 more symptoms of amyloidosis and now in just the last week, im severely anemic and my boughs are acting so horrible... ive never ever been anemic.. i've always been the opposite, too much iron, they called it polycenthemia 15 years ago. when i moved to the mountains in utah from florida (no im not lds but i have nothing against them, they are so good to people) the polycenthemia but my leg pain that had just started in florida was incresasing.. and that and the collapse at the hurricane utah tennis court in southern utah.. began the worst 12 years of my life.. sometimes, i wanted to punch my doctors when they acted like everything was in my head.. i hated my body.. som many times i wanted to give up.. i need to take care of my responsponsiibilities and my body was deliberatly making me look so lazy and useless. my husband leaving took the cake, he honestly is a good dude.. so when he lost faith in me... that was so troublesome. smh. ( your beautiful wife staying by your side is so awesome buy her flowers all the time !!! )... she believed in you.. thats worth a 100 bouquets. so anyways, im sure your eyes are crossing from this long letter.. im just so thrilled theres another human on earth that knows what all this feels like. (they put me on a new medication and i think its making me do this chatter box thing), my new docs here in vegas (and i fired two along the way) are elderly and so kind and it was the cardiologist (shes from russia i think) spotted 5 weeks ago after my PA sent me to the hospital bc a routine ekg in his office showed a recent heartattack.. he told me to go to the ER.. after i got there i got all the usual stuff " theres nothing wrong with you, everything looks great, why are you here, your docs office ekg is just wrong" and i started crying, i fell apart infront of all those people, i said, i cant do this anymore, yall just won't find whats wrong and i cant walk to the back of the store to get milk with out seizing in chest pain my jaws burning.. no one will even try when i am at a place like this with all your big machines... and the ER doc devided to admit me.. then the floor docs upstairs were mad at him b/c they didn't know what to do with me.. so they ran a plethora of heartt tests that all came back fine and on the 3rd day the discharge doc came in and said... " im sending you home, you can follow up with your GP .. " he walked out and i was getting dressed when this little old lady walked in and said "what are you doing? im keeping you and im the cardiologist.. i told her what the floor doc said and she said nonsense, is he a cardiologist! and then i said well he said my tests are fine.. and she giggled and said, i know he told you that.. but, all your test have a little this a little that -nothing big.. just on the lines here and there.. so they say "shes fine" but i read all those test like a book and i say you are very very sick and i want you to know "i believe you that you cannot breath and feel like you are having a heart attack all the time".. --- this was the greatest moment in my life.. she said, i am sure you have pulmonary hypertention but we have to run the tests but we also have to find out why you have it.. and i will give the doctor a heads up that so many of your organs are showing enlarged.. that is not because of weight gain! the weidhtgain is because of that!.. she had her suspicians.. then she got a hematologist on board too.. over at the cancer center.. so i would love to hear what it was they did that you didn't like so that i don't get mistreated too.... i was told fat pad biopsy might not show amyloidosis either, so they will have to do colon biopsy then.. and i guess, there really isn't another disease that does what this is doing and is why the hematologist is really starting to feel confident its amyloidosis, unless i have convieniently birthed a new disease. thanks.. again, if you could tell me what they did in vegas that messed things up for you.. if i can't afford to go to scottsdale or if medicaid doesn't pay for it,maybe i can get a mayo doctor to talk to mine after i officially get the diagnosis... i just know i need to live.. i also have a fear that my jake has amyloidosis.. he has some of my early health issues.. my poor baby.
i don't know why there is a line in my paragraph.. i was going to write all my thoughts then click edit, repair all my sentences and summerize more and create paragraphs.. but i don't know if i want to mess with the post now.. i usually have to edit.. its what long winded ppl should do.
Hi Dan, I shared similar symptoms to you including shortness of breath, enlarged heart muscle, swelling in my lower legs, heart failure, kidneys releasing proteins and gastro intestinal issues.
In Australia we have the standard level of care, also used to treat multiple myeloma and mantle cell lymphoma, which is 1. Dexamethasone to reduce the immune system effects,
2. Cyclophosphamide to attack cancer cells, or the misfolded proteins being produced the immune system in the bone marrow, followed by a stomach injection of 3. Velcade which is used to slow down the cancer cells from growing.
I am also part of a Drug trial for Amyloidosis, which pays for the above treatment and provides either a placebo or CAEL-101 for testing, which is a fibril reactive monoclonal antibody via infusion every two weeks. My bad numbers have been reducing, and over time the body with dissipate the misfolded proteins which have infiltrated my affected organs and reduce the effects. They also take bloods every visit to check my numbers, undertake and ECG and and Echocardiograph to gauge the results of treatment, plus a walk test to gauge my shortness of breath. Bone marrow biopsy is a treatment but I did not follow that route. I would be interested in hearing about your hopefully reduced symptoms. Cheers.
Hi Murray... yes, sounds so familiar. It's been almost 6 years now since diagnosis. Take a look at my other videos on the channel and you'll see progress. I'm doing well... still getting tested every 2-months. Stay positive Murray... that's why I'm still enjoying life! 🔥🙏
Hi Don. You just described complete my situation. I have been diagnosed amyloidosis but they don’t know yet what organs has been affected but I have proteinuria and I think my liver is enlarged. I live in Northwest where they are no specialist by my knowledge. Can you send me your doctor contact info?
My mother has Amyloidosis. Make long story short she is slowly dying cuz the doctors said they can't do nothing for her cuz her heart is at 35%.😭😭😭she is so weak, don't talk, eat.😭😭😭
how is she now? Try Planet Ayurveda medicine
@@MyTechniqueWorks my mother passed away January 20, 2020 due to her condition. The doctors couldn't help her so she was on Hospital care Hospesl care. 😭
@@yukdhall1 I'm so sorry to hear this, but I heard Planet Ayurveda maintains this disease very well and also Green Tea. I'm so sorry I know it's very painful I still can't forget my father it's been 30 years but feels like happened yesterday
hey dan, hope you’re doing well
Great video…
I recently viewed a video with you explaining a symptom of amyloidosis. The symptom I’m referring to is bloated stomach and Bowl problems. I believe you were heading to the mayo clinic and hoping you would get some information on what was going on with your stomach.
I’m curious and wonder what they came up with as a solution or a medication for this very uncomfortable symptom. I am currently being seen by a great doctor at Cedars Sinai and he’s doing a wonderful job. Monday, I have an appointment with Dr Vescio and would like to give him some information if you have any from a past visit you went to. This has been bothering me for about a month and I am now doing a follow up and would really like to get this under control, I hope you have. Thank you in advance, Dan
if you can help me out it would be greatly appreciated. I haven’t seen any updates for a while and I’m praying that you are back at your best and continue motivating people on a daily basis.
Sincerely
Kent Reed
Did you have night sweats> did you have to have a biopsy? and if so where ? What was your heart doing?
yes I did have night sweats. My heart was becoming less effective… couldn’t get up stairs, or exercise. Bone marrow biopsy and fat aspirate at the Mayo Clinic in Rochester, MN. I live in Vegas and had seen “specialists” for two years… yet they were clueless.
@@DanLier Did you also have high Kappa /Lambda? high levels of albumin in your urine? My story sounds so close to yours ,
How do I get in contact with you to see who I can see there to get tested? I’ve been to mayo but they were not successful in diagnosing me a year ago since then I’ve seen doctors all the way to UCLA and they still aren’t sold on the 3 genetic disease they think I have one is related to amyloidosis and my doc here still thinks I might have cardiac amyloidosis but I don’t “fit” the profile.
Sorry Kate, I just saw this. I wonder what profile that is? There is no profile, since MANY more people have it than realize it. You can connect with me on my website www.DanLier.com (go to "contact Dan" tab) or on my FB Amyloidosis page (on messenger). facebook.com/danlieramyloidosis/
Hi dan o really need some personal advice , my dad was diagnosed with progressive amyloidosis and refused any treatment, he’s been put an palliative care and basically left to die he so swollen with water he can’t move, as a family we do not no what to do can anyone give any advice who has dealt with amyloidosis
Hi Sara... where does your dad live? Needs to go to Mayo Clinic in MN
I believe I've got this I need help
Hi Dan, my husband just got recently diagnosed did you need a bone marrow transplant?
Hi… they were considering it, yet i was too weak. So, no… I didn’t do it. What are they suggesting for him? How old is he, and what type of amyloidosis does he have.
Very good video! My brother, who is 70yrs old was just diagnosed with Amyloidosis after a fat pad biopsy. He, like you has been into fitness, nutrition and natural vitamins all of his life. He is quite shocked with this diagnosis. He and his wife have always treated themselves with natural herbs and vitamins all of their lives and have never relied on any pharmaceuticals. I am sending your video to him as I also encouraged him to go to Mayo Clinic for their opinion. I wish you the best on your journey to wellness. Any suggestions would be appreciated. Thank you
Thank you Stacey, and I'm sorry about your brother's diagnosis. Yes, was quite a shock for me as well. Yes, please do. They have an entire department dedicated on amyloidosis, along with the #1 doc in the country, Dr. Morie Gertz. Where does your brother live and where did he get diagnosed?
My brother, Chris, lives in Kansas. That is where he got diagnosed. They have not yet determined the type yet. The Dr. called today to schedule a 24 hour urine test and skeletal survey. I guess they want to rule out multiple myeloma. I am encouraging Mayo, at least for the diagnosis and to see what their protocol for treatment is. I guess we will await the results of these tests. Thanks for your response.
Did amyloidosis effect an odour to your breath?
no
I have had several amyloids removed from my eyelids. Up and down in both eyes. As far as I know they are localized just in my eyelids. I feel bad everyday. I have a lot of different doctors but they don’t seem to make me feel better. I just went to a rheumatoid/ arthritis doc today. He wants for me to get more X-rays. Ugh.
How are you doing now?
How are you today in 2023?
Hi, I'm doing well, thank you. On a maintenance drug (Vanclexta) to keep the light chain proteins where they are. Living a "normal" life, without the ability to exercise hard b/c of the congestive heart failure. Overall, doing great!
All fake . To start a foundation.👎
Please do share your insight George. Excited to hear this.
Another guy try to sell air.
Hi Dan, very interesting story telling. Any updates now? (2023)
Hi Terry... Did chemo from 2017-2019, now on a maintenance drug (non-toxic) and I'm doing well. Light chain proteins holding just over the "normal" reading... eating well, exercising and staying positive.