[Pamela]

Quick intro & thanks for all the great insights!

by Pamela on Sun Aug 24, 2014 2:37 pm

Hi All,

I have been following these boards for over a year. I really appreciate the time and insights that you all have put forth.

I was diagnosed in 2011, late stage and high risk. I did my first auto stem cell transplant (SCT) in April 2012 and the remission lasted a year. After trying six targeted agents, my oncologist is recommending another auto SCT. I like and trust my doctor, but am so not interested in all that accompanies another SCT! Yuck.

I work full time and have through all of this. I exercise, eat as best I can, take turmeric and just want to be healthy. Oh well, we do not always get exactly want we want (but can still keep trying to).

Thanks again for the sharing.

Pamela

[Joy]

Re: Quick intro & thanks for all the great insights!

by Joy on Mon Aug 25, 2014 1:59 pm

Hi Pamela,

I know what you mean about being reluctant to do another SCT. I hope you find a treatment regimen that works for you. There are so many things to take into account and quality of life is definitely one of them.

It's impressive that you've been able to work through all of this. I haven't managed that.

All the best,
Joy

[Multibilly]

Re: Quick intro & thanks for all the great insights!

by Multibilly on Mon Aug 25, 2014 9:19 pm

Hey Pamela,

I echo what Joy says.

But let me get this straight? You came out of "remission" about 16 months ago and you've been on six different drug treatments since then? Or are you saying that you took one or two cocktails of drugs that were comprised of six drugs total? If you don't mind me asking, what were they?

[Pamela]

Re: Quick intro & thanks for all the great insights!

by Pamela on Mon Sep 01, 2014 11:40 am

Joy, thanks for the nice note. Yes quality of life is a big issue.

Multibilly, thank you also. Since relapse, I have tried Revlimid, Velcade with dex and Revlimid, Pomalyst with dex, Kyprolis with Pomalyst and dex. There may be one combo I missed here. Each time there was an immediate improvement in my myeloma panel results, then the treatment stopped working.

The results of my recent bone marrow biopsy showed a nasty 48% cancer cells in the marrow, so it seems none of that was doing much good.

I have just finished one round of mephalan with dex and Kyprolis. My doctor does not think this will be a cure. He is just trying to hold the line until I will do the next auto SCT.

My doc says I am not a good trial candidate because I have a deletion syndrome which is known for causing early relapse and early death. Lovely .

Please let me know if you think I am missing any promising treatments.
Pamela

[Multibilly]

Re: Quick intro & thanks for all the great insights!

by Multibilly on Mon Sep 01, 2014 6:31 pm

Pamela,

I'm guessing when you say "deletion syndrome" that you mean that you have del 17p (chromosome 17 deletion)?

I am no expert by any means on clinical trials for relapsed / refractory (R/R) patients, but I have to believe that a lot of R/R patients that enroll in clinical trials don't have the best cytogenetics to begin with (including del 17p patients).

If I just look at one trial that pops into my mind:

"Daratumumab in Combination With Lenalidomide and Dexamethasone in Relapsed and Relapsed-refractory Multiple Myeloma"

... I see no mention of cytogenetics in the exclusion criteria.

So, I guess I find your doc's comments with regard to clinical trials to be a bit surprising to me (but again, I'm no expert with regard to trials).

[Pamela]

Re: Quick intro & thanks for all the great insights!

by Pamela on Fri Sep 05, 2014 2:22 pm

Hmmm. That is helpful. Thank you. I ask again about trials.