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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Anyone with t(4;14) who did NOT do an SCT upfront?

by mrozdav on Sat May 23, 2015 12:54 pm

As I have previously indicated, I am IgA kappa and have the t(4;14) translocation. I was orig­inally on Revlimid and dex (Rd) for about 8-9 cycles, then started preparing for an auto stem cell transplant (SCT). However, I was persuaded at the eleventh hour by my specialist not to follow through with the SCT (not for any age-related or comorbidity issues), and am now on Velcade, Revlimid, and dex (VRd) for a four-month period.

I have actually had a very deep response to treatment and have experienced quite man­age­able side effects. Nothing to complain about. I hope I do not sound to my fellow posters like a broken record.

Are there any posters who have the t(4;14) translocation who decided NOT to have the auto SCT? I was told by my specialist that an auto SCT might put me in complete remission for about twelve months before relapse. This seems to be in line with what Dr. Libby said in this posting. where he wrote:
Unfortunately, early relapse (< 1 year) post stem cell transplant can happen. This is more often true when a patient has high risk cytogenetics, such as the p53 deletion or translocation t(4;14).

I decided that, for me, the potential difficulties involved with a SCT were just not worth the few possibly gained months. I just do not know whether I made a good decision and wonder if others of you are in the same boat. Of course, I realize that a SCT remains an option for me in the next few years (I just turned 70; my thinking would probably be different if I were much younger at diagnosis) and so this issue is still an open one for me.

Many posters indicate that they have had SCTs; only occasionally do I read that someone has opted out, and that usually is because of age or some other health issues that make him/her ineligible. I was particularly interested in Tom Brokaw's situation where he was told at Sloan Kettering that he did not need a SCT, but my assumption is that Brokaw does not have bad cytogenetics and is probably IgG, although no mention of this is made in his book. Still, he seems to be an exception as far as the SCT controversy is concerned. Or is he not?

mrozdav

Re: Anyone with t(4;14) who did NOT do an SCT upfront?

by torimooney on Wed May 27, 2015 8:17 pm

I have t(4,14) and t(14,16) and have decided not to have a stem cell transplant. I achieved com­plete stringent remission after 8 months of induction therapy of Velcade, dex, and Doxil (doxo­rubicin liposomal, Caelyx). I have remained in remission for nearly two years. I am on main­tenance every other week of Velcade and 24 mg of dex IV and monthly Zometa.

No problems and doing great!!

torimooney
Name: tori
Who do you know with myeloma?: myself
When were you/they diagnosed?: apr 2012
Age at diagnosis: 64

Re: Anyone with t(4;14) who did NOT do an SCT upfront?

by mrozdav on Thu May 28, 2015 12:44 pm

Torimooney, Thanks so much for posting this. I am very glad that you are doing well. It is encouraging for me.

If you do not mind my asking, was the decision not to have a SCT taken on your own or pre­cipi­tated by your treating oncologist? What factors entered into your decision?

Where are you being treated? I ask this because I am wondering whether your medical institution has a particular philosophy about SCTs.

Thanks again. You are the only one who has responded to my query.

mrozdav

Re: Anyone with t(4;14) who did NOT do an SCT upfront?

by mrozdav on Thu May 28, 2015 1:06 pm

Torimooney, I went back and read some of your earlier postings and now realize that you have previously provided the information that I asked about.

mrozdav

Re: Anyone with t(4;14) who did NOT do an SCT upfront?

by ahahn on Thu May 28, 2015 4:33 pm

I was diagnosed with multiple myeloma three and one half years ago and have t(4;14) . I was 70 at time. I was fortunate enough to be included in a clinical trial for ixazomib (MLN9708). This is in the pro­tea­some inhibitor family as is Velcade. The initial treatment also included Revlimid, dexa­metha­sone and Zometa. My response was immediate and within 6 months I was deemed to have a complete response. I have been in maintenance for two years now with minor side effects (peripheral neu­ropathy) and take only the trial drug; 4 times over a 21-day cycle.

I too chose not to have a SCT, although I was told I could be a good candidate. I'm happy with that decision.

ahahn

Re: Anyone with t(4;14) who did NOT do an SCT upfront?

by Norm on Thu May 28, 2015 4:44 pm

I have IgA kappa with the t(4:14) and started with dex / Revlimid followed by a SCT in 2011. I had a 3+ years in remission with Revlimid maintenance. (I'm now on CyBorD.) Sorry, I know you only wanted the non-SCT people to reply, but the t(4:14) doesn't automatically rule out the favorable possibility of having a successful SCT. It's too bad doctors can't predict what will happen to make these decisions easier.

Norm
Name: Norm
Who do you know with myeloma?: me
When were you/they diagnosed?: Aug-2010
Age at diagnosis: 59

Re: Anyone with t(4;14) who did NOT do an SCT upfront?

by Banrelk4 on Fri May 29, 2015 7:46 am

I was reluctant to get a SCT because I too had an abnormality; mine was deletion -17p, and I had read online that my chances of the SCT helping were not very high. But my wife and several oncologists encouraged it and I had it done at Duke in September 2012. The treatment knocked the disease back a bit, but by December I was taking Pomalyst with an increasing M-spike. And the Pomalyst didn't help.

However, God and the SCT somehow and amazingly got rid of my chromosome abnormality. I am now doing well with normal light chains and an M-spike of 0.0 in a clinical trial of dara­tumumab. My M-spike was 1.6 g/dL and climbing when I began the trial in September / October 2013.

So, my two cents worth is that you should go ahead and get the SCT; you never know what good may come of it.

banrelk4

Banrelk4
Name: E.C.
Who do you know with myeloma?: Me
When were you/they diagnosed?: Oct 2010
Age at diagnosis: 73

Re: Anyone with t(4;14) who did NOT do an SCT upfront?

by Multibilly on Fri May 29, 2015 9:55 am

Banrelk4,

Your -17p mutation disappeared? Was that disappearance confirmed by more than one bone marrow biopsy? I don't think I've read about a -17p mutation disappearing altogether ... and it does sound miraculous.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Anyone with t(4;14) who did NOT do an SCT upfront?

by mrozdav on Fri May 29, 2015 10:36 am

Banrelk4,

Thank you so much for posting about your experience. I am really glad for you and that you finally got such a remarkable response. I now also have come to feel that a SCT probably would have been the prudent course of action for me back in April.

What causes me to have continued doubts about the efficacy of a SCT in my circumstances is that, as of the last test results (and for months before), I was already at 0.0 M-spike and my kappa and lambda light chains have been normal as well as the k/l ratio (which was never truly problematic). My IgA number has been back to normal for a number of months, although at last testing it had gone to slightly below normal. I wonder what there is to knock back that is measurable?

True, my immunofixation still shows a trace of myeloma, which I hope will disappear as of my last round of subq Velcade. But, is getting rid of the trace myeloma indication via a transplant a better option than continuing on the novel drugs? I do not expect anyone to even attempt to answer this question. As others have written, there is no right or wrong answer.

The other issue that comes to mind is how you can know that the loss of the del(17p) is not at­tributable to a delayed response to the drugs you were taking, including the seemingly in­ef­fective Pomalyst. Maybe this is a naive question which just points out how little I know. But others have written in and said that their stem cell transplants were not initially successful but, months later, after continued maintenance on novel drugs, they achieved complete responses or better.

mrozdav

Re: Anyone with t(4;14) who did NOT do an SCT upfront?

by Banrelk4 on Fri May 29, 2015 4:12 pm

I don't know what caused the -17p deletion abnormality to resolve; God, or maybe one of the three treatment protocols that seemed ineffective at the time. I've had 4 or 5 bone marrow biopsies since the abnormality disappearance about 3 years ago, and as far as I know, it's still gone. And I'm a grateful boy!

banrelk4

Banrelk4
Name: E.C.
Who do you know with myeloma?: Me
When were you/they diagnosed?: Oct 2010
Age at diagnosis: 73

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