MM Stage 6 done, any thoughts--BMT or monthly treatment?

Hi @tlgreen12605 You’re at a crossroad in your MM treatment now that everything has stabilized in your treatment. You’re wondering about continuing with a monthly injection. Or, your other option is an autologous stem cell transplant using your own cells with the hope of a longer term remission.

I know you’ve been active with the MM group:
Want to talk about Multiple Myeloma: Anyone else?
https://connect.mayoclinic.org/comment/692936/

You’ll be familiar with some of the names I’m linking below. These are people who popped up in my search for MM patients with transplant. Either they have personally gone through the SCT or were caregivers for the family member.
@jeaniecm @auntieoakley @lisal64 @irishk @cat1952 @bscham @callie28
@dkandalec
I hope they’ll be able to give you some valuable insights and opinions on the SCT for MM.
What has your hematologist suggested for you? Do you have any specific questions?

Hi tlgreen12605
I had a sct in Jan 2016. I was diagnosed with stage 2 igg kappa mm in July 2015.
After initial treatment of Velcade injections 2 times a week, oral cytoxin and dexamethsone 1 time a week and I was on a bone strengthening clinical trial between zometa and xgeva so I received both one was the real drug and the other a placebo, and monthly IVIG infusion. At that time they placed the Hickman Cather for my chemo and to harvest the stem cells. I had testing done mid December 2015 to see if I could tolerate the sct. I could but had too many mm cancer cells still circulating so my transplant Dr. At the Nebraska Medical Center in Omaha Ne has me do a 3 day 24 hr chemo infusion as an inpatient at the hospital. After that I had to take the growth factor shots daily for 7 or 11 days (I can’t remember). After that I went to the Nebraska Med Center and they did the harvesting. I believe they had scheduled me for 3 days to harvest but they actually collected enough for 3 transplants the first appointment. ( I am glad I finally got to be an overachiever lol)
I then was admitted to the hospital and given the chemo mephlan. The first 7 days were great but after that is when your blood counts go down and I got really sick.
I hesitate to tell anyone about my experience but I got severe c -diff, got heart failure.
I was in the hospital 24 days then went home. I was extremely swollen with fluid, couldn’t eat cause the mephlan caused sores in my esophagus plus I couldn’t smell or taste. I went into a local hospital 2 weeks after I came home for 1 week then 2 weeks later I was in for another week but that time they gave me the correct antibiotics for the pneumonia and after that it was onwards and upwards. I went back to work mid May 2016. Even though I had those bad side effects I am glad I had it. I was in remission from Jan 2016 till July 2022. I have been on velcade and then changed to ninlaro. Now I have what they call a biochemical relapse. They are watching the m spike and my kappa light chains and will change my meds once they reach a certain number.I don’t want to scare you because even after all that I would do it again. Not everyone has those side effects. My mm specialist believes it was chemo overload. But since I am 70 she said she wouldn’t do another sct but I would be a candidate for the car-t cell transplant.

I would have a discussion with your oncologist and see what he/she recommends.
Hope this helps and doesn’t scare you
CAT

My husband had an ASCT after revlomid induction for three months, for IGG Lambda myeloma. He had about 7 super hard days and a few months of recovery. Eleven months later he had his second both at Mayo Rochester. Again he had some pretty hard days, but they passed. This time he got a complete response. He went on low dose revlomid as a maintenance for two years and did not relapse for 6 years. Then a year of treatments gave him a few more years treatment free. Now he is 13 years out, 8 months into treatments again, and his numbers have been zero for 3 of those months.
He did collect enough cells for a third transplant but he is too senior to want to do that now.
It sounds like you have had 6 cycles of treatments, and weighing your next move. ASCT are definitely short duration aggressive treatment in hopes of long term gain. Have you been evaluated at a large cancer center or university that does transplants?

Thank you. Not sure what car-t is but will look it up. During the 6 years cancer free did you have treatments of any kind? I am velcade and darzalex and revlimid, and steroid. And I am not sure what treatment is next step..revlimid or velcade once a month. I see doctor in 2 weeks and he will refer me to others if I want to do sct. Haven't decided.

My doctor willing to refer me to be evaluated for asct and get more info. I don't have family to support the downtime, so that is why I'm hesitant. I see doctor in 2 weeks and to determine when bone marrow biopsy. That will determine success of treatments. He suggests either Revlimid or Velcade monthly but Velcade causes injection inflammation that bruises really bad. Thank you for insights.

My husband has had treatment free time. Including a 6 year block and a 3 year block. He has spent more time with no treatment than on treatment. They told us at the time when he was diagnosed that he could expect to have this disease managed for life. We really like to take advantage of treatment free time.
Have you been on IMF to read up about myeloma?

https://www.myeloma.org/?utm_medium=cpc&utm_source=microsoft&utm_campaign=paid-brandimf&utm_content=bing-brand&utm_term=rsa&msclkid=a0fccd26304e1a9c3b10a98cc81d7e9b
We attended a patient and family seminar and learned so much. Then we took that new found information with us to Mayo Rochester when he was evaluated, I can’t begin to tell you how helpful it was to have all of that information.
If you are considering ASCT, do you have a location picked out or approved?

Hi
I was on maintenance velcade shot once a month then in 2021 I was changed to ninlaro because the velcade was causing neuropathy. I also go xgeva injection once a month
Car-t cell is when they harvest your T cells then genetically alter them to kill the cancer cells.
Good luck and prayers for your journey

Thank you cat1952. I started this whole process with a "neuropathy" in my feet, but the neurologist said I didn't have neuropathy per the electrical studies he did. (forgot what the tests are called). He is the one who discovered the MGUS and referred me to my oncologist/hematologist. From there I had a bone marrow biopsy that confirmed MGUS but was in the moderate range. Six months later had dramatic spike in Lambda and 2nd biopsy my plasma jumped from 7 to 27. So we will see what happens next in couple weeks. My fuzzy feet/leathery soles are no better but no worse through the treatments so far. Thanks again. Many blessings over you and your continued journey too!

Hi tlgreen12605
Prayers for your journey too!
Keep us posted