Thank you Dan and Brian! I haven’t been able to connect with any young people diagnosed with AL Amyloidois. I am a 42 year old white woman. I would like to know where I can connect with Brian to ask him if they treat differently for younger people since he was diagnosed at 45. God bless you Dan!!

@DanLier

10 ай бұрын

Hey Olivia... I'll let Brian know.

Thanks for sharing your journey Brian and Dan. You guys are an inspiration and your positive energy is felt. I was diagnosed with AL amyloidosis in August 2023. I started weekly CyBorD+ Daratumumab in September 2023. I just completed my last treatment in March 2024. My hematologist said I have achieved complete hematologic response and my light chain bio markers are with in the acceptable range. My BNP went from 700+ to 200. I'm being monitored monthly for relapse and hope and pray that the amyloid proteins don't start to reproduce. But knowing what Brian went through with stem cell transplant is comforting that there are other options. I watched Dan's KZread videos from the first treatment to the last and compared it to my treatments. Thanks Dan!

@DanLier

3 ай бұрын

Wow, thank you for your kind words and the update on your situation. Incredible results you’e achieved!! Congratulations, and I’m glad you were able to gain insight from my video experience. Keep up the great work!

Welcome back!!! I’m glad you’re both doing well!!!!! 🙏🏻

@amyloidosismyjourneytosucc4995

Жыл бұрын

Thank you Cheryl!

Mayo is absolutely wonderful! My husband is a TTR patient there. It is important to get to an amyloidosis center. There are several in the country. It's outside the bandwidth of most doctors.

@amyloidosismyjourneytosucc4995

Жыл бұрын

Yes, that's for sure!

I'm suspected with amyloidosis and love these videos. Waiting for fat pad biopsy. So inspirational. Dan! Can you please update more often so we know you're still with us!

I'm so excited that Brian is doing so well after his stem cell transplant! Dan, you're looking good as well! I'm a little afraid to do the treatment, I don't want to be sick like that. I'm very happy to see Brian's healthy looking skin tone and plumpness. I'm still skin and bones. I still feel pretty good, just weak. I hope a lot more people can be saved from amyloidosis. I hope doctors can start diagnosing this disease sooner. I'm going on 5 years and hope for at least another couple of years. Definitely live life large! Goodluck Brian and let us know how you are doing! Thank you Dan, good to see you doing well!

@DanLier

Жыл бұрын

Bless you Elizabeth... thank you and thanks for sharing. Sending you healing vibes. ❤

Thank you so much for posting all your experiences. Im having problems myself with having to diagnose myself as I am already in my mid 60s, have ALL THE ISSUES you also have and more and no one will listen. God Bless you and help you as you have much to live for and are extremely lucky to have the family and financial resources to take care of yourself. I just watched the one where you saw 3 CARDIOS in Vegas and , ah - to no avail. You had to fly yourself to Mayo! It looks like you are going to make it, and Please keep posting. It will not only help people like myself Now, but in the future it may help the researchers to see a detailed journey. I had a Heart Attack 2 years ago and they told me nothing except it was an "N-STEMI" and that I needed a "heart transplant" but as there were no hearts available I could have a triple by-pass instead. I refused. I had been told years ago that a by-pass surgery wont help my Coronary issues.... they.. put me on drugs that make me want to die and also, the "carpel tunnel" in both of my hands make it impossible to even cook, clean or put on my shoes. (the hand issue started right before the heart attack.... could it be related?) I used to exercise, now everything hurts all over, and in the morning I cannot move a single muscle for sometimes an hour to get up.... IF I have this disease (how to find out?) it would also explain the joint issues I have that wont respond to "treatment" kidney issues (stones constant UTIs and more) Its like I have every single symptom of AmyL. Sorry for the "book" but I didnt know how to reach you. please keep posting videos...... thanx, mary

@DanLier

Жыл бұрын

I'm so sorry Mary... sigh. Where do you live? They need to give you a bone marrow biopsy or a fat aspirate test (pull some fat from your abdomen area with a syringe) and check for amyloidosis.

Hello Dan, I am so glad for you and Brian. It’s awesome to see how well you are. I have been following you since 2018. Have watched every one of your postings and some more than once. I don’t have AL but have become very knowledgeable because of your channel. My best friend Tito from college in Chile got it in 2018 but he didn’t make it, he died December 5, 2019. Please keep up your postings because they help others to know that there is hope. Best regards, Ronnie Shand

@amyloidosismyjourneytosucc4995

Жыл бұрын

Thank you Ronnie. So sorry about your friend Tito. It's a tough disease.

I really hope that the cure is coming soon my friend by Intellia. Best of luck!

@DanLier

3 ай бұрын

Thank you!! Me too

I AM GLAD ABOUT THE GOOD RESULTS!

@amyloidosismyjourneytosucc4995

Жыл бұрын

Thank you Victor

Hello Dan , My mom was diagnosed with Amyloidosis last April and she went through the stem cell transplant Her light chains are normal and heart function has returned to normal Will keep everyone in my prayers.. Please keep posting videos Thank you

@amyloidosismyjourneytosucc4995

Жыл бұрын

Sorry about her diagnosis... thank you for sharing. Will send her healing vibes and prayers as well. Help her stay positive... I believe 90% of the healing is the mindset!

Another year has passed. Hoping for another update from you!

... HUGS & KISSES TO YOU BOTH....!!!!!!! ... 🥰😇👍🙏

@DanLier

Жыл бұрын

Thank you! We take all good vibes coming our way!

So great to find someone else posting the journey! I have been on Cy-D Treatment Chemo, and just had a heart transplant due to AL Amyloidosis. Good luck and hope all is still well with you, live long!

Welcome back Dan! Glad hearing good updates from you.

@amyloidosismyjourneytosucc4995

Жыл бұрын

Thank you Houssam!

I’m 79 years old and had carpal tunnel in both hands.. This is my second surgery and before I got my second surgery I had a bump arise just below my palm area.. I attributed this to maybe a spider bit and when I had my surgery the hand doctor took a sample of the skin in that area and that when it was a discovery, I had amyloidosis. I have had no health issue and all my test have have come back normal and have cardiogram test and they’ve come back normal. So this is one crazy problem but I will keep on top of it and watch my health issues. So that’s it! So far no issue!

@DanLier

11 ай бұрын

hmmm... interesting! Yes, stay on top of it!

@jipjob1

5 ай бұрын

I’m now on vitamax and fortunately my health insurance is paying for the drug and other test! This drug cost 800 hundred a day! That almost 300000 dollars a year! Its was sort of an uphill battle to get my health insurance on board.

You guys rock! I'm really happy for you.

Any new updates about your health issues?

My mom passed 4/1/23 to Amyloids. God bless you 🙏🏾🙏🏾

@DanLier

Жыл бұрын

I'm so sorry... sending you healing vibes from Vegas. How old was your mom?

@gwenwilkinson1603

Жыл бұрын

So sorry about your mom.

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