[EF11]

Experiences with not doing an early stem cell transplant

by EF11 on Thu Jan 29, 2015 10:09 pm

I am interested in hearing from folks who were eligible for a stem cell transplant (SCT) but decided against early transplant following induction treatment.

How long was / is your first remission? What treatment(s) were you on? What drove your decision and would you recommend someone who was in your shoes to forego early transplant? Did your disease stage and risk factors influence the decision? Have you since undergone a transplant on relapse?

Most importantly, I am trying to understand what the downside is for playing the wait and see game? My husband is 43 and was diagnosed in November with IgG kappa light and heavy, started with very high M-spike, 22 % plasma cells, one huge lesion in hip and many other small lesions, very anemic but no renal issues and no abnormalities on FISH. He has responded very well to RVD, achieving CR during his initial 4 cycles.

We are wondering why not buy some time pre-transplant on the remission he has already achieved? He would harvest stem cells now and finish out the rest of 8 full cycles of RVD and then go to 10 mg Revlimid maintenance. Does waiting to relapse on Revlimid create a risk of not having Revlimid as a future treatment option? What are other risks in waiting, keeping in mind that he will still be under 55 in 10 years and, aside from multiple myeloma, is quite active and healthy.

I appreciate hearing about any experiences from those who have chosen this path.

Thanks!

[xstemboatr]

Re: Experiences with not doing an early stem cell transplant

by xstemboatr on Fri Jan 30, 2015 6:53 pm

My husband was 64 when he was diagnosed with myeloma. His situation was very different than your husband's. After his initial therapy, he ended up in and out of the hospital with a colon surgery and hernia, causing them to have to stop his myeloma treatment. He also has the deletion 17p high risk issue. He was never able to achieve a complete remission.

Looking back, if he would have been as young as your husband, I would say he probably would have more seriously considered it. After all, with myeloma, we are all just buying time. We take advantage of a certain drug regimen until it isn't effective anymore, and then try some other combination. We have also talked to doctors who do not advise patients who have a "high risk" issue to have a SCT.

One of the main reasons, 'tho, my husband did not want to go through with a SCT is that he would not be drug free. He felt why put himself through this procedure (with unforeseen possible complications) and then still have to be on maintenance therapy?

Because of your husband's age, maybe he would achieve a good response and then not have to be on maintenance therapy? That would be good! But, you never know. There have been many studies done, and published, about "to wait or not to wait" that are available. It seems to be quite controversial (as well as the idea of having to be on maintenance therapy after a SCT). I would suggest you and your husband just read all those studies and then make a decision based on your husband's overall health at this time.

All in all, my husband has been doing just fine. I notice changes in his personality and sleep habits (which I blame on dex), but, other than that, he's playing golf, renovating a house, enjoying life! But worries about the long term side effects of the maintenance therapy (Revlimid and dex) are always in the background. And also, how long will they control his myeloma? But, you may have those worries even after a SCT. No easy answers.

Hope that helps.

[breezyh11]

Re: Experiences with not doing an early stem cell transplant

by breezyh11 on Fri Jan 30, 2015 10:05 pm

I am at a crossroad, trying to decide what to do. I was diagnosed at 54, feeling absolutley fine. I went to a new doctor, who ran a complete blood workup and diagnosed the multiple myeloma. I don't know who was more shocked, the doctor or me. I was very lucky. My oncologist was extremely im­pressed, as he said a lot of doctors would not have picked it up. (My Aunt went un­diag­nosed for over a year and a half after seeing several different doctors).

I started on a clinical trial with Revlimid and dex. The purpose of the trial, which has been going on for years, was to determine if an early SCT was more beneficial than a later one. I ended up on the transplant side, but had to back out as I was in the process of selling my home and my father's home and renovating the one we were moving into. Because it was a trial, I could not delay the SCT for more than a month or so, and I didn't have what I would consider a "clean" environment to recover in. I did harvest my stem cells and they are waiting for me.

Fortunately the Revlimid-dex combo is working well for me. Since I was diagnosed at a very early stage, I only had two small lesions on my shoulder. I had no symptoms and my numbers have gone down with most being in the lower normal range. I still work full time and, other than being tired and going in for my montly Zometa treatment, not much has changed.

I saw my oncologist yesterday and he asked me if I was ready to consider a SCT. I don't think I am. He said those who have a transplant tend to live 10 to 12 months longer. But the whole process of the transplant with recovery take several months. I just don't know. I've gotten to know a lot of myeloma patients, and it seems to me that there are just as many people who have good results as those who don't.

For now, I will stick with the Revlimid and dex. If it stops working, I will have to reconsider.

[torimooney]

Re: Experiences with not doing an early stem cell transplant

by torimooney on Sat Jan 31, 2015 11:55 pm

I was diagnosed at 64 in perfect health, other than anemia which was asymptomatic. I researched and learned the options I had for treatment. I sought out Dr. Berenson in LA who has been researching and treating strictly myeloma for the past 30 yrs. He feels with all the novel agents out there, stem cell transplants are not necessary. He once was an advocate of SCT before the multitude of novel agents became available. I felt that since I felt so good, why go down the road of SCT and be knocked out of action for a few months and possibly causing long term problems from the SCT. I had induction therapy for 8 months and achieved complete stringent remission. I am on maintenance of Velcade and IV Dex plus monthly Zometa. I've remained in remission for 17 months with little to no ill effects from treatment. They are putting people who have had a SCT on a maintenance program so I feel there was no advantage for me to choose the route of SCT. I have some genetic risk factors t4:14 and t 14:16 and even with that, Dr. B felt I did not need to do the SCT. I am very comfortable in my decision. You have to believe you've made the right choice and not second guess yourself. Doing your research, like you are, is the most beneficial action you can take to give you the reassurance you need that you're making the right decision. Good luck on whatever you decide.

[Karen]

Re: Experiences with not doing an early stem cell transplant

by Karen on Mon Feb 09, 2015 8:41 pm

I was diagnosed back at the end of 2010 and had my stem cells harvested in early 2011. At that time, I was 51, in good health other than the myeloma, and had fortunately not experienced any serious complications except for bone lesions. I did break my scapula in a fall down the stairs, which is how I wound up being diagnosed.

At the time of my diagnosis, my oncologist said that, while a SCT would definitely be a treat­ment option we would "keep on the table," he didn't think I needed to have one immediately. Per­haps he could tell that I just wasn't ready to deal with it. I wound up being in a clinical trial with Revlimid / Velcade / dex and was in remission for about 18 months.

After that, my light chain numbers started to rise, and we agreed that I should probably think more seriously about transplant. In order to get back into remission, I started on Cytoxan / Velcade / dex (CyBorD / VCD). I managed to stall on the transplant until my older son gradu­ated from college, then went into the hospital in June 2014.

My main impetus for finally deciding to have the transplant was the hope that I could go for at least a while without so many drugs, especially steroids. I had continual issues on the dex, with sleeplessness and weight gain. My doctor does believe in maintenance therapy, so post-transplant I have been getting Velcade shots on a 4 week on / 2 weeks off basis. I'm also going to be starting Zometa again soon. If I can manage to stay off steroids for a while longer, it will all have been worth it We shall see!

I should add that the transplant was not a fun experience, but it wasn't as bad as I had feared, even though I did have a couple of complications (blood clot in my arm from the PICT line, and temporarily impaired kidney function from antibiotics they gave me to treat sepsis.) After I'd been home for about a month, I started to feel much more like "myself" and am not experiencing any lingering effects.

I think the main thing is to have a doctor you trust and to understand that there are no guaran­tees in any of this. You just have to weigh your options, consider your quality of life, and make the decision you feel comfortable with.

Good luck!!