Multiple myeloma and stem cell transplant

If my smoldering MM turns into active MM, I will be checking to see if I can SKIP the stem cell transplant. I came to this decision based on what I read recently from Dana Farber:

From the link:
"While an autologous stem cell transplant yielded a longer progression-free survival (PFS) – the length of time patients are alive with no relapse of their cancer – the high doses of the chemotherapy drug melphalan given in advance of a transplant SIGNIFICANTLY (emphasis added) increase patients’ risk of developing secondary leukemia and myelodysplasia later."

"Patients who did not undergo an early transplant had a median PFS of 48 months; conversely, those who did receive an early transplant had a median PFS of 68 months – or more than five years. However, the OVERALL SURVIVAL RATE WAS VIRTUALLY THE SAME (emphasis added) – about 85% – for both groups with a median follow-up time of 76 months."

Not a small risk - a SIGNIFICANT risk of developing secondary leukemia and myelodysplasia. With no real improvement in overall survival.

Note that the Dana Farber release didn't mention anything about the risk profile of the trial participants' MM. It may be that for those with high-risk MM, the benefit of SCT outweigh the risks.

The stem cell transplant doctor and team wanted me to have the transplant two years ago, but I have a slow growing stage 1 and responded well to the cycles of shots bringing my spike of 3 to barely apparent in tests. My specialist at Mayo Eau Claire said if the treatment I am on stops working there are many more. The transplant involves at least 10 weeks of being away from home, you get very ill with diarrhea and vomiting. When you finally can come home, your immune system has to be built back up so that would mean my family members could not visit us etc. A video I received from Mayo had an actress portray a patient who had had a stem cell transplant. She was roughly my age and said after either a couple or several years she had her energy. I don't have that amount of time to spend getting my strength back if first of all, I don't have to lose it by having a transplant. Also, a friend had one at least six years ago and was told she would have to be on a medication for two years at $1,000 per month. No, she has to be on it for the rest of her life and she naps 2 1/2 hours every day. Just what my experience, studying, and talking to experts have taught me. I still believe the International Multiple Myeloma doctors and researchers are just a few years away from a cure for some of us.

@rprice0519 Welcome to Mayo Clinic Connect! When were you diagnosed with multiple myeloma?

I have researched into a stem cell transplant. Given my other health issues, I doubt I would survive it. Not everyone is a good candidate, and please talk to your medical team about a course of action that fits for you.
Ginger

I am a 47 years old Hispanic female that was diagnosed with MM last year and I am being recommended a Bone Morrow transplant by my oncologist and a team at MOFFIT. According to test result the medication I am currently on is working very well my KAPPA went from 9 thousand to 22 in less than a year. I was told that this is a good time for the transplant but I am still a bit scared and confuse on what to do.

I was diagnosed with stage 2 of 3 MM 3 yrs. ago. @ age 59.After 6 months of getting into remission, I was able to self donate stem cells for the transplant. My care team ( Mayo Clinic and local oncologist) guided me thru the process. They do several test of your health to ensure you are a candidate for the process. I am know 18 months post transplant.
Being scared and confused is a normal feeling most of us go thru. Be your own advocate. My care team walked me thru the whole process and provided materials explaining the process prior, during and post transplant. They were available to ask questions. I was able to ask questions to a few people I met that had been thru the process. This helps with the fear of the unknown. Many transplant locations are now doing this process as an outpatient procedure if you’re close enough to the hospital. ( better than spending several weeks in the hospital for recovery). Biggest risk is infection post transplant while your new cells graft and begin working again. I was lucky enough not to experience this issue.
I was back to work after three months and began getting re-immunized.( 2 year process). I had a few side effects from the chemo prior to transplant and my hair grew back within about 3 months as well.
We have put my MM to “sleep” and a much better quality of life since the procedure. I would highly recommend the process as a treatment until a better process or cure is found. Again, be your own advocate. It was not too difficult to research for information and the Mayo Clinic was great place for this. This forum was another place to get information and to connect with people who have been thru the process and for support.
Good Luck in your MM journey and hopefully many years of remission!

Good morning, @myangels514 and welcome to Connect. There are quite a few members in the forum who have had autologous stem cell transplants (using their own cells) for MM and other blood conditions. It’s another helpful treatment to keep MM patients in remission. I know it can be confusing when you feel conflicted about what to do. Your doctor feels you’ve had a good response to your medication and is suggesting a stem cell transplant to help you stay in remission longer.

I want to introduce you to a couple of members who have shared their stories. I’ll post their links below. Hopefully you’ll feel a little more at ease about the decision to go forward.
I also wanted to make sure you’ve seen the very encouraging reply @dkandalec wrote to you here: https://connect.mayoclinic.org/comment/1096104/

@jstpeachy has shared her MM journey and transplant experience in this post:

~My Autologous Stem Cell Transplant Journey - Mayo, Phoenix
https://connect.mayoclinic.org/comment/1096104/
~~~~
@jiminmorris was caregiver for his wife during her MM/SCT journey in this discussion:
~Helpful suggestions as we head into BMT? https://connect.mayoclinic.org/discussion/helpful-suggestions-as-we-head-into-bmt/

It can be so helpful to be able to talk with others who have been through the same experiences. So don’t hesitate to ask questions here. What is concerning you the most about going ahead with the transplant?