Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I have both Wild ATTR CM and AL Light chain, diagnosed in 2019, took chemo 2020, OK since then, on Vyndamax since then, but now light chains increasing again, and doc is planning on giving me Darzalex soon. What am I looking forward to?

February 10 (edited)
 · 
Reactions
A MyAmyloidosisTeam Member

Wow, we likely have crossed bicycling paths! Did you do any of the Festivelo rides out of Charleston? I did maybe 6, starting in 2023. These were run by Charles Fox--I bunked with Charles on my 2009 cross country ride.
I managed to put on 102,000 miles on my LiteSpeed road bike--now on display in local bike shop with a broken weld.
And at 92, I am impressed as I expect most of the rest of us are. As for amyloidosis, I anticipate if you have been able to keep in top condition that you will do just fine.
Let's see if we can communicate via email: my address is (Email address can only be seen by the question and answer creators)

vern

March 5 (edited)
A MyAmyloidosisTeam Member

Thanks, Brenda, for that. I had my doc visit yesterday in Charleston at the MUSC Amyloidosis Center of Excellence, and talked with two docs, one for the ATTR and one for the AL Light Chain. Both are very encouraging that I am doing very well and my outlook is good for a few more years. However, my lambda light chains are going up, so I am going to be starting the Darzalex in May, and they tell me that it is very effective in most cases. My kappa/lambda ratio hasn't changed, which is good. I will be 92 in a month, and am fortunate just to be alive and in relatively good health other than the Amaloidosis and the heart and kidney damage already done. Appreciating every day, time with family and friends, enjoying life. I hope your husband's treatment is successful and that you both have many more years to love each other. I will pray for you both.

February 17
MyAmyloidosisTeam

What can you expect from Darzalex treatment for AL amyloidosis, and what's the outlook?

Darzalex (daratumumab) comes in two forms. The original version is given through an IV infusion, while the newer subcutaneous version (Darzalex Faspro) is a quick injection under the skin in your abdomen that typically takes just three Show Full Answer

What can you expect from Darzalex treatment for AL amyloidosis, and what's the outlook?

Darzalex (daratumumab) comes in two forms. The original version is given through an IV infusion, while the newer subcutaneous version (Darzalex Faspro) is a quick injection under the skin in your abdomen that typically takes just three to five minutes. The subcutaneous version is often faster and may be easier to tolerate.

Since you're dealing with both AL and ATTR amyloidosis, it's important to know that Darzalex specifically targets the AL component by working against the abnormal plasma cells producing the problematic light chains. Regarding prognosis, AL amyloidosis outcomes vary greatly depending on which organs are affected, how early treatment starts, and how well the disease responds. Heart involvement is the most serious complication and the leading cause of AL-related complications.

It's vital to complete the entire course of treatment even if you start feeling better. Stopping early can mean losing the potential benefits of therapy. Since AL amyloidosis can develop alongside other conditions, managing overlapping treatments is important.

Your doctor can provide more specific guidance based on your individual situation, especially since you have both types of amyloidosis and have already been through one round of treatment.

February 10
A MyAmyloidosisTeam Member

I have put your email address in my file. I wasn't as big a cyclist as you, geting into it only at about 78 when I had to give up running. I did have many fun rides with my cycling buddies, friends for 50 years, still in touch with the survivors for a beer now and then. Maybe you might have heard of our group -- the FREAQS from Greenville. Used to do any crazy sports thing, running, sailing, cycling, croquet, triathlons (not me).

April 23
A MyAmyloidosisTeam Member

Thanks so much for that, Vern. I, too, was a cyclist, last doing an 82 mile ride for my 82nd birthday, then when 84, taking a 4-day, 300 mile cross state ride from Greenville to Beaufort, SC. I had to give up biking to take care of my failing wife. I was in great shape when I took the chemo, and had no real problems. I am still in pretty good shape for 92 years old, and I am hoping that will help me tolerate the upcoming regimen. I am a positive person, and am not worried, I just was interested in what to expect. Thanks again.

Louis

March 4

Related Questions

View All
A MyAmyloidosisTeam Member asked a question 💭
Milton Keynes, UK

A MyAmyloidosisTeam Member asked a question 💭