[zara]

How necessary is a stem cell transplant?

by zara on Sat Mar 28, 2015 4:36 am

Hi! I am new to this forum, however, my myeloma is not new to me.

Sadly, I had been suffering rib pains and then low back pains for two years. Went to several doctors. No one took it seriously. Told me it was just age (I am 54). It was difficult for me to imagine that from living a perfectly healthy life - horse riding, swimming regularly, and working full time - I had suddenly become either 'old' or had developed psychosomatic pains.

A year later, when I went back to the orthopedic surgeon because I was still suffering, he had me do some blood tests. When my results came back, he was so surprised that he would not tell me what it was. Just sent me off to a hematologist who asked for further tests. Before I could go back to him with the results, I landed in hospital with a broken vertebra and a broken arm.

After that, things moved quickly. Within days, I began my regimen of CyBorD [cyclo­phos­pha­mide, Velcade, dexamethasone]. Along with that, I got radiation for the fractured vertebra. The ten days in hospital were painful, but, by then, my attitude was 'whatever... ' . I think that and the amazing support I have from my family is what got me through the worst patch.

Two months later, I am back at work. Started slowly, but now I am nearly able to do full time again.

Luckily, the chemo has not been tough. Side effects are all tolerable. The dex makes me a bit hyper but then on those days I do a lot of extra work When that wears off, I feel very low for two days. I have timed that for the weekend.

Now that I am almost at the end of my chemo, I need to think of the next stage. The doctor has recommended an autologous stem cell transplant (ASCT). I really don't want to do it. Would like to take my chances with just the maintenance therapy.

Are there others out there who have opted for this route? How has it worked for you? Would you recommend it?

Also I really want to thank everyone for this helpful site.

[Multibilly]

Re: How necessary is a stem cell transplant?

by Multibilly on Sat Mar 28, 2015 10:34 am

HI Zara,

Welcome to the forum!

This is a perennial topic of discussion on this forum. You can read about some different perspectives on the topic by browsing through some of these threads:

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

https://myelomabeacon.org/forum/no-early-stem-cell-transplant-t4838.html

https://myelomabeacon.org/forum/stem-cell-transplant-or-not-t4390.html

https://myelomabeacon.org/forum/upfront-stem-cell-transplant-t4219.html

https://myelomabeacon.org/forum/early-stem-cell-transplant-t3686.html

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

[Cheryl G]

Re: How necessary is a stem cell transplant?

by Cheryl G on Sat Mar 28, 2015 11:29 am

Hello Zara,

As Multibilly already has mentioned, you've asked a question that often gets asked here in the forum, and for which there really isn't a universally accepted answer.

I suspect the answers you'll get to your question will depend on several things, including what sort of response you've had to treatment so far, and what sort of chromosomal abnormalities were found when you were tested at the time of your diagnosis.

Another factor may be where you are located. If you are in the U.S., I suspect doctors might be more willing to delay a transplant given the flexibility they would have to treat you with different drugs later on.

Multibilly pointed you to some good previous discussions about transplantation that already have taken place here in the forum. I would also recommend getting familiar with the forum's search box. Just type in words like "transplant", "transplantation", "SCT", and "ASCT", and you'll find a lot of transplant-related discussions that may be helpful.

The posting "Useful links to existing forum discussions," which is always at the top of the "Treatments & Side Effects" section of the forum, also has a lot of useful links that will take you to long lists of discussions on treatments and side effects.

Good luck, and I look forward to seeing you more often here in the forum in the future!

[zara]

Re: How necessary is a stem cell transplant?

by zara on Sun Mar 29, 2015 7:11 am

Thanks Multibilly and Cheryl,

Those are helpful links. I have already begun looking at them. First of all, it is good to know that there are so many others who are debating this. Secondly, there are lots of arguments for and against.

Once again, I am so glad to have found this site and all the people on it. Learning a lot.

[EF11]

Re: How necessary is a stem cell transplant?

by EF11 on Sun Apr 05, 2015 1:15 pm

Hi Zara,

My husband and I considered delaying stem cell transplant until his first relapse but at his myeloma specialist's advice based on his age and aggressive disease, we decided to move forward and he had his transplant 2 weeks ago following his induction treatment. I encourage you to read my post on his transplant experience (https://myelomabeacon.org/forum/asct-experience-t5213.html#p30512) just to see that sometimes it is not so bad as it sounds. Perhaps you may consider transplant as a treatment option down the road and it may be worth thinking about harvesting your stem cells after your induction therapy to keep your future options open.

Good luck with your decision and hope you have an enduring remission!

[Hummingbird]

Re: How necessary is a stem cell transplant?

by Hummingbird on Wed Sep 14, 2016 4:25 am

My specialist performed stem cell transplants for seven years at the Mayo Clinic. He is pro transplant. But he says 50% of his eligible patients choose not to have the transplant. He agrees it generally adds nine months, if successful. I, too, will talk with the surgeon before deciding, but I am leaning away from it.

Good luck, and thanks to everyone who posted these very helpful links and info!

[K_Shash]

Re: How necessary is a stem cell transplant?

by K_Shash on Wed Sep 14, 2016 9:04 am

Hello Zara,

Multibilly and others have given you a lot of valuable references already.

Therefore, you may have already read the discussion on the new Mayo (mSMART) guidelines for newly diagnosed myeloma (link to guidelines)

I found these guidelines quite useful when I was making the same decision about a year ago. My oncologist had left the decision to me and many other oncologists (family friends and even a young colleague of my own oncologist) were advising me that the autologous stem cell transplant was 'standard of care". However, each case is different, and I found the Mayo guidelines very useful in making my decision of opting out of the transplant, at least for now. In my case, my decision was based on the facts that I have light chain-only IgG myeloma, I responded well to the Revlimid, Velcade, and dexamethasone induction treatment, and I have no other complications.

I am sure there are pros and cons to any decision one makes for such a complex disease. Some have opted for the transplant, even in cases similar to mine, to be 'drug free' for an extended period of time. Others may need the transplant due to their cytogenetics, as tabulated in the guidelines.

Good luck and I, too, wish you a very long and active remission.

[Kevin J]

Re: How necessary is a stem cell transplant?

by Kevin J on Wed Sep 14, 2016 9:45 am

Hello Zara,

As everyone has indicated, this is a decision that needs to be considered on a case-by-case basis, and one that you ultimately need to be most comfortable with.

I was faced with this choice when diagnosed in 2011. I opted to forego the stem cell transplant. The two primary reasons for me were

1) I was still in relatively good health, felt the transplant was an extreme measure, and did not want to be 'out of service' for 3-6 months or to take a leave of absence from work, and

2) There was a clinical study with Kyprolis (carfilzomib), Revlimid, and dexamethasone (KRD or CRD) available that was showing good results.

I reached a complete response in the study, then later when I showed signs of relapse, I went on maintenance. I finally relapsed just recently after more than five years. I have now just started another clinical study with Empliciti (elotuzumab), Pomalyst (pomalidomide), and dexamethasone (EPD). Mean progression free response has not been reached in the study yet, but is currently at 33 months. Therefore, if all goes well, I may get another 3+ years from this treatment.

My point for boring you with my history is that my approach has been to try and treat this one set of drugs at a time. If I can average around 2 years or so per treatment, there are so many op­tions available, and so many new ones being developed, perhaps I could extend this indefi­nitely, or at least until a cure is found or something else claims me.

I offer this as a point of view and not a recommendation.
Kevin.

[gumps2003]

Re: How necessary is a stem cell transplant?

by gumps2003 on Fri Nov 04, 2016 10:37 pm

Thank you for your views. This is helping me to decide my own case.

[Dean UK]

Re: How necessary is a stem cell transplant?

by Dean UK on Mon Nov 07, 2016 8:52 am

Hi

I remember having these thoughts after reading up when I was first diagnosed back in April. I got some great advice like you have from this site, especially when I didn't know much about the disease.

When I asked my myeloma treatment team this question, I was so taken aback by their reply. I was told, Why? Why? Why? It's a must to go early for a stem cell transplant. If you don't, we will transfer you back to your local hospital. I really wasn't given the choice.

At the time, I was shocked, but now I'm pleased I'm going for it early. My transplant is actually tomorrow. I might not be pleased once I'm going through it, but I know I will be pleased afterwards, as it's a big thing to tick off the list. For me the reason I first thought I could put it off to later when I was first diagnosed was down to one thing only for me. My reason was – and I don't mind saying – that I'm scared to do it and still am, but it's getting done this week.

Once it's done, hopefuly we can move forward, and hitting it hard at first diagnosis is a positive thing.

One thing to also mention. In the UK we are about 2 years behind the drugs that are available in the States. Plus we can only get certain drugs at certain times. This is another reason I think you get less choice regarding holding off for a stem cell transplant.

Having said that, I am told that, despite our behind in new drugs compared to the USA, our survial rates are similar. Is that because the UK always go to a stem cell transplant early? Also, a lot of doctor's don't use a FISH test in the UK, mainly because if you needed a different approach on drugs due to your risk factor, you can't get the drugs for when it's best anyway. Having said that, I'm still proud of our NHS despite its faults. It saved my life in April; I was stage 3.

Who knows, but it made me think.. Sorry if I've gone on for too long. Whatever you decide, good luck.

Regards, Dean