April, 13, 2020 Mayo Update - Dan Lier
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- เผยแพร่เมื่อ 28 ก.ย. 2024
- Just returned from Mayo Clinic in Phoenix, AZ. Overall the report is solid with NT-Pro BNP decreasing to 556 from 1769 and my blood is healthy, which is incredible. My lambda light chain proteins increased a bit to 3.38, yet still low. My congestive heart failure from the amyloidosis has been a challenge and now I have low out put heart failure as well. Stroke volume is at 29... normal is from 32-59. Game summary: going to need a pacemaker in the near future, so we decided to just do it now. Why wait to feel great?
Thank you for your thoughts and prayers and all the positive vibes.
Thanks so much Dan for your updates. My brother was diagnosed with Amyloidosis this last December. Hearing your encouragements helps me to deal with my brothers journey. Thanks again for taking the time to bring hope to others with this.
Hi Dan, we’re still praying for you daily!
Thanks for the update.
Thank you Stephan, wow... I appreciate that. I really do.
Wow, what a great update. Glad your feeling better and better.
Thank you Dan.🙏🙏🙏
Hola! Hello!. Have you not been asked for bone marrow autotransplantation? I also have the disease. Since May 2017, my chemotherapy cycle did not work so at 5 months I had a transplant, I also have congestive cardiomyopathy and currently I only take heart medicine. My prBNP is 2800 but it reached 5000. I am quite well. Good luck with your pacemaker but talk to your doctor about the possibility of autologous transplant before putting on the pacemaker
No I haven't. My light-chains are "holding steady"... it's my heart that's the biggest challenge right now. Wow, you and I are so close. April of 17 for me. Wow, good movement on your NT-ProBNP. What are you taking for your heart?
Hello! For the heart I am taking Seguril Encomcor Cor Aldactone and Simvastatin 40. My light chains in May 2017 were 13.2 and with cybor they reached 5.2, so the autologous transplant was determined. Now my light chains are 1.7 and my heart got better. Here in Europe in London at the Royal Free Hospital a medicine is being studied that cleanses the affected organs from amyloid deposits The doctor is Dr Peppis They have discovered that light chains bind to a protein to form amyloid and they need calcium so I am dispensing with everything that provides calcium and taking foods that lower calcium such as strawberries. I am from Spain and in October it will be the international congress of amilloidosis in my country. Let's see what progress they bring. There are many hopes !!!!!
Mi name is Gema
@@Mega-ys9jj hello mega when you did the stem cell transplant what the nt prob number was ? And did you try medicine called daratumumab or darzalex? Its working for my sister the nt prob was 3000 and going down to 1000
@@qaqaization When detecting the disease, the pNBP was 2400 and the troponin 130. When I received Cybor, the pBNP reached 5000 and 5 months later they made me the transpant with a pBNP of 3200, now it is at 2600. My cardiologist gives more importance to troponin . I have not taken any other medicine since the transplant although my hematologist is thinking about it and maybe it is daratumumab. I have reviews every 4 months. How is your sister?
@@Mega-ys9jj wow very interesting. Thank you for sharing!!
How is your leg pain?
Hi, leg pain is gone. Thanks for asking.
just re-watched the video you commented on. The leg pain from neuropathy. Neuropathy still here... not certain if it was part of the amyloidosis, yet docs think it is. Just maintaining.
Hi Dan, you are looking great.
I am glad you are getting the peacemaker, it will really make a difference. Ronnie Shand
Thank you Ronnie. I believe that as well!!
Thanks for the update. Glad you are going to get a pacemaker. Let us know how it goes. I have a feeling you will see a big difference. Stay strong!! Praying all will go well with the pacemaker implant. It should go well - my only thing with my first implant was I woke up on the operating table while they were inserting it (no pain but could feel pressure). My face was draped so was not sure I was alive or dead all around me was light blue. Started calling out I am awake- I am awake. I heard Dr say put him out. The next day I woke feeling the best I had felt in many. years. Been better ever since. I hope the same for you Dan!
wow, crazy story. So glad you're feeling good!
Good dan the nt prob going down iam happy for you .. Why you change your treatment to mayo arizona i remember it was in mayo minnesota and what is the new medicine name
Thank you. I live in Las Vegas, so Mayo in PHX is much more convenient for me. New Medicine: www.venclexta.com/
@@amyloidosismyjourneytosucc4995 so i hope every thing going better. We are still in mayo to treat my sister and her nt prob going down to 1000 and light chain 1.6 and lambda 3.3 she have amiloid in back also she cant walk long distance the amiloid also in here leg muscles and she is taking velcad and dexamethason and some thing called daratumumab or darzalex
Thank you
@@qaqaization just curious... when did she get diagnosed? (sorry if you have already told me that)
@@amyloidosismyjourneytosucc4995 she diagnosed on September 2019 with meyloma and in August 2019 they did pt scan on heart and found some small scars on it after that they did amyloidoisis test from belly fat after that they confirmed disease with meyloma and amyloidosis involved heart and muscles and stomach and nerve cause she have also carpal tunnel syndrome all these test done in Thailand and my country and germany we are now in mayo clinic for second opinion and its working great
Thank you.🙏
God bless
I'm following you since I got some biopsy done during a carpal tunnel surgery I had. I appreciate you for it encourages me to fight in this uncommon territory, frightening to say the list. Multiple of test's haven't found anything abnormal. Have Kappa free light chains a little high, but, the Lambda and K/L ratio are good.
Alpha 1 is little high and little anemia.
Next test for heart are Nuclear to make sure I don't have Amyloidosis and after that a Stress test. I just feel horribly weak all the time.
I'm also doing all I can, Brother, I think my internal organs are not responding it's an ordeal for sure.
Keep transmitting I'll be commenting.
Praying
Thanks for the post Dan. I hope all goes well with the pacemaker i think it will change your life for the better. Thoughts and prayers are with you love the positive attitude.
Thank you Mike. I appreciate that.
Thank you so much for sharing your journey and being such an inspiration and help. May God bless you both!
Thank you Gena.
You're an inspiration , thank you for giving other's hope. 🌻
Thank you Katrina.