[PeggyB]

How did you decide whether to have a SCT or not?

by PeggyB on Wed Dec 31, 2014 3:24 pm

I'm curious to know how people have made their decision to either have, or not have, a stem cell transplant (SCT).

I have been on RD (25 mg Revlimid and 20 mg dex) for 2 months without much success, and RVD (RD plus Velcade) for 6 months, with great success. The last bone marrow showed only 0.2% cancer cells. My lambda light chain numbers have been in the normal range for the past 3 months. I feel great with very little side effects. I just get diarrhea maybe once or twice a week, which I think might be due to Velcade shots.

Since I feel so normal and can do everything I like to do, I am reluctant to undergo this procedure. None of my doctors are pushing me one way or the other, and from everything I have read there is no clear cut science or opinion in the medical field at this time suggesting early is better than late.

I'm pretty happy with my decision not to undergo a SCT now, but harvest and save cells instead for the future. My decision may be driven by fear as much as anything else. I just hope I am not missing an opportunity to really attack the cancer now by postponing. It's easy to be a bit in denial when I feel good.

[Ellen Harris]

Re: How did you decide whether to have a SCT or not?

by Ellen Harris on Wed Dec 31, 2014 4:37 pm

The transplant decision is a big one. I just completed one in October and am still recovering.

I also had a very good response to RVD, but I felt that, based on my research, the transplant would deepen my response. I will know if it did in a few weeks, but my bloodwork looks pretty good thus far.

I was in the hospital 16 days and did not have any serious complications. I did have thrush, which was easily treated, and my blood pressure was low for a couple of days. The one symptom that was bothersome for me was nausea, which lasted several weeks after discharge.

You can always harvest your stem cells and decide later. I am 59, and one of the reasons I decided to go ahead with the stem cell transplant is because I am in decent shape aside from the myeloma, and, as we get older, other illnesses can occur.

It's a big decision any way you slice it. There are a lot of posts and articles on the Beacon that will help you with your decision.

Good luck!

[Multibilly]

Re: How did you decide whether to have a SCT or not?

by Multibilly on Wed Dec 31, 2014 6:44 pm

Hi Peggy,

As Ellen said, this is indeed a big decision and there is no perfect answer.

I'm not sure I would personally factor in the way I'm feeling after initial chemo as part of my decision process, as this disease can sometimes progress and wreak havoc on your body in pretty stealthy ways. I would instead just look at the pros and cons of the approaches, talk to and read up on specialists that are on both sides of the debate, and then try to firm up your own philosophy based on your research.

I found these threads to be insightful in beginning that journey:

https://myelomabeacon.org/forum/anderson-giralt-transplantation-debate-t4201.html

https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html

[K_Shash]

Re: How did you decide whether to have a SCT or not?

by K_Shash on Wed Dec 31, 2014 7:47 pm

Happy New Year, Peggy.

I was in the waiting room for my 3rd weekly Velcade shot when I saw your post. I was diagnosed with my multiple myeloma in late November (led up to that from discovering high protein in the urine and multiple blood and urine tests). It was confirmed by biopsy in early December and I started my chemo on December 17. I have been asking the exact same question and I have been studying various forums (the Myeloma Beacon is God sent) and also the websites of UCSF, Stanford, Sloan Kettering, etc. My wife has been doing a lot of research, as a practicing internist, on various sites that are easily accessible to her. That allowed me also to access Dr. Vincent Rajkumar's (con) and Dr. Philppe Moreau's (pro) opinions on the exact same question (link).

I also came across Dan from Phoenix's post on "Medicare won't cover stem cell storage" thread in this forum. He had been in remission from around 1987 till about 2012 and found his 25 year old stored stem cells were of no use. However, he never needed them for all these years, after the targeted radiation and the then aggressive chemo. I have come across another 82+ year old patient of one of the doctor friends, who has been on the maintenance therapy for over 17 years, after the original Induction chemo, and never had ASCT. There were at least a couple of more such cases that you can find in various forums and threads right here on the Myeloma Beacon.

Dr. Berenson and Dr Richardson, both considered myeloma experts, also apparently have been getting fantastic results without ASCT. My wife told me that all that she could conclude, after studying a lot of discussions and opinions on the New England Journal of Medicine, was there is no consensus on this question amongst the "experts". Fortunately, my oncologist has stayed neutral and essentially told us that ASCT or not is my decision. I am certainly not going for it (hate needles and the sight of blood, there is very high chance of relapse 3 years after the ASCT anyway, then back to Induction and maintenance chemo, etc.).

I am most probably going to get the stem cells harvested to appease my family. We have a few hematologists and oncologists in my son's age group that are at UCSF and Stanford respectively. They are all for ASCT, until I questioned their reasoning beyond "We are the best in ASCT, we have been doing this for a long time" and "Recommended treatment by experts". I wonder if all these "Myeloma Centers for ASCT" are just trying to get the maximum utilization from these centers they have built!! And these doctors that were so convinced are my family friends. Same with a very nice oncologist in my wife's department.

Fortunately, I started my chemo (RVD) fairly early and I guess my myeloma may be considered a Stage 1 1/2. Also, mine is the very well understood IgG kappa light chains free myeloma. The only twist is that all the IgG is leaking into the urine. Luckily, my kidney function is normal so far. I do not want the damage to cause me to be on dialysis if I can avoid it. I won't know the success of the 8-week RVD treatment for another 6 weeks and I'll proceed accordingly.

Until the urine test raised an alarm, until I started this treatment, I have been and continue being (4 days a week now) a very active 67 year old, playing 2 rounds of golf every week (used to walk and carry my bag), walk 3+ miles at least 3 times a week, etc. Even my PCP was shaking his head as how 'surreal' all this seems to him (and to my son, too), when I seemed to be the healthiest patient! So, it seems our experience, treatment and concerns are very similar. Hence the long discussion, above.

In conclusion, I agree with most of the advice in these discussions: The final decision is yours and mine. Knowing that there are almost a dozen promising drugs in the "pipeline", I think the newer chemo, should I have a relapse after a few years, would be my choice over ASCT with the stored cells. Fortunately, it seems both of us have tolerated the RVD; so far in my case. Some patients had no choice as they could not tolerate the induction chemo.

Let 2015 bring us some breakthrough treatment and find a "cure"!

K_Shash

[Multibilly]

Re: How did you decide whether to have a SCT or not?

by Multibilly on Wed Dec 31, 2014 8:26 pm

Peggy,

The Dr. Berenson K_Shash refers to in his posting is one of the specialists I see.

[Melanie]

Re: How did you decide whether to have a SCT or not?

by Melanie on Wed Dec 31, 2014 9:00 pm

My husband at diagnosis had a lambda light chain of 7700. His myeloma was found completely by accident during a company physical. My husband never felt ill prior to his diagnosis. As a matter of fact, his original oncologist said that, when he first came in, she thought she would just do his blood test and see everything was normal and send him on his way. Told us she was extremely surprised at his light chain numbers. She also told us that she has seen people in her office with lambda light chains at 1000 and in kidney failure because of it and then along comes my husband with light chains as high as his and normal kidney function.

So we ended up making the decision to do the transplant since his light chains have been extremely stubborn about staying down, with the knowledge that, with light chains as high as his, his kidney function could start heading downhill at any time. Our oncologist as well as the specialist we are seeing now have both said that this is not something we want to have happen.

[Boris Simkovich]

Re: How did you decide whether to have a SCT or not?

by Boris Simkovich on Wed Dec 31, 2014 9:09 pm

Just a quick – but very important – clarification for everyone reading this discussion.

For most myeloma specialists, including Dr. Rajkumar (Mayo Clinic) and Dr. Richardson (Dana-Farber), who are mentioned in K_Shash's posting above, the issue when it comes to stem cell transplantation is not whether or not a myeloma patient should EVER have a stem cell transplant. Instead, the issue generally is whether to have a stem cell transplant as part of a patient's initial myeloma therapy, or at relapse (i.e., "early" vs. "late" transplantation).

There are a few myeloma specialists, Dr. Berenson being prominent among them, who are basically completely anti-transplant.

However, for the vast majority of myeloma specialists, the issue is not whether or not to do a transplant, but WHEN to do a transplant.

As always, just because an opinion is held by "the vast majority" does not make it correct. But I did not think it correct for this discussion to leave readers with the impression that prominent myeloma specialists such as Dr. Rajkumar and Dr. Richardson are anti-transplant in the same way as, say, Dr. Berenson. They are not.

[Multibilly]

Re: How did you decide whether to have a SCT or not?

by Multibilly on Wed Dec 31, 2014 9:41 pm

Thanks for the additional comments Boris. I agree it's important to keep these points in mind as one wrestles with this issue.

Wishing you and the Beacon staff a wonderful new year and thanking you for all of your tireless work in keeping this forum going.

[Nancy Shamanna]

Re: How did you decide whether to have a SCT or not?

by Nancy Shamanna on Wed Dec 31, 2014 10:08 pm

Happy New Year's to all! 2015! Imagine that ... seems like just yesterday that we got into a new century. Father Time is allowing us a new year again. We are blessed!

I thought it was interesting to read a Beacon Staff posting this week about some adjustments to how melphalan may be administered, i.e. without the addition of propylene glycol. That sounds like a good improvement to me. After my auto stem cell transplant, my blood pressure went higher than it ever had before, ditto my HR. It took a few months for that to normalize, and I do walk every day, which I really think helps one's health. So, possibly in the future, stem cell transplants may be looked at a bit differently. They may be more 'tolerable', and thus people may feel less apprehensive about undergoing that procedure.

Best wishes to all!

[Steve Mohr]

Re: How did you decide whether to have a SCT or not?

by Steve Mohr on Wed Dec 31, 2014 11:24 pm

Hi Peggy,

I had a stem cell transplant in June. I was in the hospital 16 days. The first 9 days were really tough, as I developed a urinary tract infection and had some blood pressure issues. Everything after that has gone well. I returned to work 5 days after being discharged and, most importantly, blood test results from my two 3 month check ups have been positive.

I based my decision to have a transplant on several factors, the first being a very strong trust in my oncologist and the cancer center where I was being treated. My doctor's diligence in determining my diagnosis and the care I received after that by him and the cancer center created a trust that made it very difficult to go against their belief that a stem cell transplant was the best course for me to pursue.

Secondly, although I only went through 7 rounds of induction therapy (Revlimid and dex) prior to the transplant, I did not like how it was affecting me physically, mentally, and emotionally. If a stem cell transplant would enable me to go for an extended period of time treatment free, I was willing to go through whatever a transplant involved to do so. It has been 8 months since my last treatment. I have not felt this well since before being diagnosed.

Third, I am relatively young (58) for having multiple myeloma and in very good health. I felt that, considering this would probably be the best I would be from a health standpoint from this point on, my body would be able to better deal with a transplant and reap the benefits of a transplant than at a later date.

Like other posters have stated, this is very much an individual decision, as it has to be, be­cause this disease is so varied in how in manifests itself in those of us diagnosed with it. My advice is to make a decision on the course you decide to follow and never look back.

Best of luck with your decision!