[kevinc]

SCT or no SCT?

by kevinc on Thu Apr 25, 2013 10:20 am

Hello,

In February I was told I have Stage 3 multiple myeloma due to multiple lesions in my arm scapula and collar bone. Plasma in marrow of 20%, IgG of 3000, total protein of 9.7.
I'm starting my fourth cycle of rev\vel\dex and my oncologist says its the standard of care for me to have the SCT when my current treatment is completed. I met with the SCT team at University of Michigan last week and the doctor told me that 1) because I'm considered low risk (hyperdiploid chromosome, and limited symptoms) and 2) My response to the Revlimid has been very good (numbers all back into the normal range) that I should consider holding off on the SCT and transition to Rev maintenance. He said I could still go forward with the SCT if I choose and that it is my choice.

Just wondering if anyone else on the forum has been faced with a similar dilemma and if so what did you decide?

Thanks,
Kevin

[Dr. Jason Valent]

Re: SCT or no SCT?

by Dr. Jason Valent on Thu Apr 25, 2013 4:20 pm

Clinical trials to try and answer the question of early transplant or continuing on effective therapy are in the follow up phases. Until the long term data is available, we are not exactly sure what to recommend in the setting of good disease control.

I do think it is important in this setting to get an idea regarding the patient preference for transplant or no transplant. The primary benefit seen previously with transplant was an improvement in disease response. However, with the newer therapies, many patients achieve optimal response prior to transplant. Then the tranplant may be used later when the disease relapses.

So to sum up. . . it is certainly not wrong to proceed to transplant and many myeloma centers advocate this type of therapy early in the course of treatment. However that has to be balanced with patient preference and lifestyle.

[Multibilly]

Re: SCT or no SCT?

by Multibilly on Thu Apr 25, 2013 4:29 pm

Hey KevinC,

Tough choice. Seems like I re-post this thread a lot, but I found it helpful getting some different perspectives on the two approaches. You will find that folks on this forum run the full spectrum of opinions on this subject. I personally have come to the decision to go the novel-agent-only route and keep ASCT in my hip pocket, should I progress (I am currently smoldering). But choosing ASCT up front is an equally valid choice and one which I respect.

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

[Kate]

Re: SCT or no SCT?

by Kate on Thu Apr 25, 2013 7:10 pm

Hi KevinC
Recently, I had a similar question and the forum replies are here:
https://myelomabeacon.org/forum/no-sctp-chemo-only-treatment-t1686.html

I was diagnosed in January and started with 25 mg Revlimid and 20 mg dex in early April. I decided not to take the "standard" treatment, which includes Velcade due to certain side effects that I am not game for, at least not at this time.
Kate

[kevinc]

Re: SCT or no SCT?

by kevinc on Thu Apr 25, 2013 7:19 pm

Dr Valent

Thank you for your feedback, I really appreciate your quick response. I think at this point I'm going to go ahead with the ASTC. I understand that Insurance may not cover the cost of just the harvesting and storage for the stem cells to be used at a later point in time. Also, if I wait until some point in the future for the ASTC my understanding is that using Revlimid over a long period of time sometimes makes it difficult to harvest the stem cells.

Multibilly,

Thank you for the link, it's a tough choice to make at this point in the game especially since I'm feeling pretty good and have had a very good response to my current treatment. The link you included was very helpful. Good luck to you!

[silverberg]

Re: SCT or no SCT?

by silverberg on Sat Apr 27, 2013 9:55 am

Hei hei from Norway,

I have not heard that Revlimid use compromises future stem cell collecting or ASCT.

Certainly melphaline does compromise collecting stem cells.

We did 5 cycles of CYBORD and collected stem cells while in stringent complete remission.

We collected enough for 2 future stem cell transplants.

We then chose to have a drug free holiday, try novel therapies when necessary, and postpone the ASCT. Our philosophy was minimal intervention maintaining a chronic disease at a level that was not harming the body irrecoverably.

After 3 months of drug free holiday, the beast returned.

We tried Velcade alone but this only stabilized lambda numbers, no decline.

So we went back on the CYBORD and numbers went back down near normal.

After 6 months lambda started rising again, and so we switched to Revlimid.

Sadly...it turns out my wife has a primary resistance to Revlimid. It was our first "IDE".

Her lambda numbers skyrocketed to 2250 in 6 weeks with loads of bone involvement.

We are now using Melphaline-velcade-thalidomide-dex. Thankfully, her lambda numbers are plummeting and she is planning to do a ASCT when her numbers get more normal.

There is a statistically relevant improvement in after stem cell transplant remission length if the patient does the ASCT while in complete remission.

We talked about your situation and think it would be a good idea for you to at minimum collect your stem cells for future transplants right now while you know you are in complete remission.

Good luck!

Marianne and David