Connect with others who understand.

Sign up Log in
Resources
About MyMyelomaTeam
Powered By
Real members of MyMyelomaTeam 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 Was On Clinical Trial For Last 4 Mts. Few Days Back It Has Failed. Now My Doctor Suggested For Autologus Transplant.

A MyMyelomaTeam Member asked a question 💭
Kerala, India

Is Autologus transplant beneficial when Free kappa above 1000.

September 28
View reactions
A MyMyelomaTeam Member

Hi Viswanadhank, I didn't have a good response to induction treatments. I had an autologous transplant in 2017. It was a rough procedure. It took about 3 months to get my strength back. I have done pretty well since. Wishing you the best outcomes.

September 29 (edited)
A MyMyelomaTeam Member

I had 2 Autologous SCTs and they gave me 12 years of fairly decent quality of life and I would do it again if I could but I am too old to be able to get one. It’s not an easy thing but it’s the heavy duty chemo that they give you before your transplant that kills your whole immune system and you have to be really careful about infection and it takes a very very long time to recover completely. It took me about at least 9 months to recover completely.

September 28
A MyMyelomaTeam Member

Autologous stem cell transplants can be beneficial for multiple myeloma patients, even if certain markers like free kappa light chains are elevated. Here are some key points:

- Effectiveness: Autologous stem cell transplants have been shown to extend survival in multiple myeloma patients. In a study involving over 13,000 Show Full Answer

Autologous stem cell transplants can be beneficial for multiple myeloma patients, even if certain markers like free kappa light chains are elevated. Here are some key points:

- Effectiveness: Autologous stem cell transplants have been shown to extend survival in multiple myeloma patients. In a study involving over 13,000 people, those who received the transplant had a median survival of approximately 73 months compared to 50 months for those who did not.
- Relapse Rates: In a 2016 study, 28% of participants experienced a relapse within a median time of 20 months post-transplant.
- Side Effects: Short-term side effects can include fatigue, headaches, fever, nausea, vomiting, diarrhea, loss of appetite, and skin rashes. Some side effects, like nausea, can be managed with medications.
- Maintenance Therapy: Post-transplant, patients typically receive two to three years of maintenance medications to sustain the treatment response.

It's important to discuss with your doctor how your specific condition, including your free kappa light chain levels, might impact the effectiveness and suitability of an autologous transplant for you.

September 28
A MyMyelomaTeam Member

Finally, now in Dec 2023, Dana-Farber made a new Press Release stating that if a person has a Very Good to Complete Response - Do Not Get an ASCT (Transplant) because they've looked back at the damage the ASCT caused which is More Frequent Infections of a More Serious Nature.

In 2010, Dana-Farber started the Determination Clinical Trial. As they moved from Stage 1 to 2 to 3, based on their Results of Achieving a Longer Time before the First Remission, they convinced the FDA and Industry that everyone with MM must get a ASCT after Induction. During my Treatment in 2021, It was strenuously pushed-on-me but I said - No

Here's there Press Release - there's plenty of tech jargon to try to soften their message but they've finally admitted the procedure has too many downside (serious long term side effects). In their original Sales Pitch (2018 and earlier) they presented their Conclusions based solely on the very Worst Case Responses from the Clinical Trial.

https://www.dana-farber.org/newsroom/news-relea...

Even then, though they said - Longer before First Relapse (Progression Free Time), even the Worst Responders had a Longer Overall Survival Rate (OS). Basically, the Clinical Trial proved everyone lived longer without an ASCT (Transplant) but this very expensive medical procedure became the marching orders to the Industry.

That said, I've talked with a few that the ASCT saved their life, often getting dual ASCT back-to-back, due to a total failure of their bone marrow, even with blood transfusions. These Do-or Die cases are far less common.

DETERMINATION trial subgroup analysis suggests potential strategies for individualization of myeloma treatment | Dana-Farber Cancer Institute
DETERMINATION trial subgroup analysis suggests potential strategies for individualization of myeloma treatment | Dana-Farber Cancer Institute
September 29

Related content

View All

I Am Interested In Thoughts (pro And Con) About Stem Cell Transplant. It Seems Like A Very Extreme Procedure With Little Overall Benefit.

A MyMyelomaTeam Member asked a question 💭
Kingston, ON

If You Were Asked To Enter A Clinical Trial Would You Do It?

A MyMyelomaTeam Member asked a question 💭
Moorestown, NJ

What Should I Know About Stem Cell Transplant Before Hand

A MyMyelomaTeam Member asked a question 💭
Dubuque, IA
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data Policy and Privacy policies.Your privacy is our priority Lock Icon
Already a Member? Log in