[Ellen Harris]

Should I do an early stem cell transplant?

by Ellen Harris on Thu Jul 24, 2014 10:56 am

Good morning everyone!

I hate to ignite the stem cell transplant issue because I know there is so much controversy, and everyone has an opinion, however, I do need some advice.

Here's the background: Diagnosed in April, 2014, IgA light chain kappa. Light chains measured over 12,000 at diagnosis. Responded very well to Revlimid, Velcade, and dexamethasone [RVD]. Last reading light chains were 32. (They dropped to 58 after the first round.) I was anemic also at diagnosis. White count has always been normal, and I am no longer anemic, by a lot.

My oncologist (who is not an multiple myeloma specialist) has informed me that he thinks I should go for the stem cell transplant in about 6 weeks. I have seen two different specialists who both say I could wait. That latest one, with whom I just met on Tuesday, feels that I am probably close to remission at this point, and perhaps could put off the stem cell transplant for several years, assuming I am in remission and the remission is maintained.

Other pertinent bloodwork includes,

Beta 2 Microglobin, 3.3
Gamma Glob. 0.40
IgG 468
IgA 79
IgM 28
K/L ratio 2.23.

Everything else pretty much normal. Creatinine hovers between 1.3 and 1.4 due to damage from light chains. My skeletal survey indicated small lytic lesions in the skull and forearm.

Here is what I don't understand: How could I be close to remission with these abnormalities (excluding the creatinine)? Also, I am 59. Although I have no other chronic illnesses at this point, as I move into my 60's, who knows?

This last multiple myeloma specialist said something like, "You will tolerate the stem cell transplant as well at 65 as at 59." I am not sure that is correct. Just because I am in decent shape now does not mean that I will be in 5 years, assuming I even make it that far!

Input would be appreciated! Especially after that recent article on the French study.

Thanks, all!

Ellen Goldstein-Harris

[dnalex]

Re: Should I do an early stem cell transplant?

by dnalex on Thu Jul 24, 2014 2:38 pm

Hello,

I'm not sure if you've read this Myeloma Beacon report, but if you haven't, it might be worth a read, since it's directly relevant to you.

"Treatment Regimen Featuring Revlimid-Velcade-Dexamethasone Therapy And Stem Cell Transplantation Yields Deep Responses In Newly Diagnosed Multiple Myeloma", The Myeloma Beacon, July 16, 2014.

[Multibilly]

Re: Should I do an early stem cell transplant?

by Multibilly on Thu Jul 24, 2014 3:06 pm

Also see this report:

"Early Or Late Stem Cell Transplantation For Myeloma? New Study Finds Both Strategies Yield Similar Overall Survival", The Myeloma Beacon, August 16, 2013.

[Ellen Harris]

Re: Should I do an early stem cell transplant?

by Ellen Harris on Thu Jul 24, 2014 3:39 pm

I previously read these Beacon articles......and I am still confused! It seems that there are pros and cons to both approaches, however, I am leaning toward the stem cell transplant as the statistics seem to favor it. It's a tough call, though! Thanks for your responses.

[Multibilly]

Re: Should I do an early stem cell transplant?

by Multibilly on Thu Jul 24, 2014 3:48 pm

Ellen,

Are you debating an early versus late transplant (which is what your first post indicated), or are you debating whether to have a transplant at all (which is what I read into your second post)?

[Ellen Harris]

Re: Should I do an early stem cell transplant?

by Ellen Harris on Thu Jul 24, 2014 3:51 pm

I am considering all options at this point.

[Multibilly]

Re: Should I do an early stem cell transplant?

by Multibilly on Thu Jul 24, 2014 4:11 pm

That's understandable. When I first began this journey, I found this thread to have some good insights to consider:

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

At the end of the day, there is no perfect answer. It will take a leap of faith on your part to select the path you want to follow. It also sounds like you've got some time to investigate your options.

[Dr. Edward Libby]

Re: Should I do an early stem cell transplant?

by Dr. Edward Libby on Thu Jul 24, 2014 8:19 pm

Hello Ellen,

A key factor in the decisison regarding stem cell transplantation is your cytogenetics, the genetics of your multiple myeloma. What were your FISH results ? What were the results of your metaphase cytogenetics?

I am sure these were done and you should gain some familiarity with them. The genetics of multiple myeloma are often a deciding factor in how we treat. In fact, the cytogenetic results and their use in treatment decision making are the beginnings of "personalized oncology" for multiple myeloma.

[Ellen Harris]

Re: Should I do an early stem cell transplant?

by Ellen Harris on Fri Jul 25, 2014 10:19 am

Dr. Libby,

Thank you so much for your response.

My FISH analysis revealed two abnormal clones: a diploid clode (/EE/91%) and a near tetraploid clone (/EE/9%). Quoting from the report: " The abnormalities in these two clones were allelic deletion of IGH gene (27%) and gain of 1Q with allelic deltion of 1p (25%). CCND1/MYEOV-IGH@ gene rearrangements, deletions of the 13q14 region and TP53 gene and gain of chromosomes 5,9 and 15 were ruled out in this sample by interphase FISH analysis. In summary, 2 abnormal clones with allelic deletions of 1p32 region and IGH @ gene and gain of iq21 regions were observed in this sample by molecular cytogenetic analysis and these abnormalities are characteristic of plasma cell myeloma."

Does this information provide any guidance on whether and when a stem cell transplant would be advisable?

Thank you so much.

Ellen Harris

[dnalex]

Re: Should I do an early stem cell transplant?

by dnalex on Fri Jul 25, 2014 1:32 pm

Hi Ellen,

Both the gain in 1q21 and deletion in 1p32 have prognostic and treatment implications for myeloma. I think you definitely want to talk to your specialists and get a very clear rationale as to why they want to do what based on these results.

Best wishes with your treatment,

Alex