[Chaz62]

Should I insist on new FISH + cytogenics

by Chaz62 on Sun Dec 08, 2013 10:25 am

Hi,
A brief history -
diagnosed 11/2008 - stage 3a durie salmon
induction - trial MCC 15399 with CVDD(cytoxan, Doxil,Velcade,
dexamethasone)
Asct - June 2009 - vgpr - stable - no meds for 15 months.
Progressive disease 12/2010 - start Revlimid
vgpr achieved and stable for 18 months
progressive disease 7/2013

Now - active progressive disease.
rev+dex not responding
Velcade+cytoxan+dex not responding

Serum m-spike now 2.2 from 1.5 on 10/28 - similar gain as september to october
FLC ratio now 41.31 from 5.78 on 10/28 -similar gain as september to october
IgG now 2958 from 2171 on 10/28 - similar gain as september to october
Urine M-spike now 58.4 from 15.3 on 10/28 - similar gain as september to october

My appointment with my Onc is next week and I suspect we'll try pomalidomide (Pomalyst) next. Any other suggestions?

The last FISH or genetic analysis was done just prior to my ASCT. Should I push for new FISH and genetic analysis?

Thanks in advance!
Chuck

[terryl1]

Re: Should I insist on new FISH + cytogenics

by terryl1 on Sun Dec 08, 2013 1:53 pm

Have you considered carfilzomib (Kyprolis)? I did it as a newly diagnosed patient and it worked well for me and the people in my trial.

[Multibilly]

Re: Should I insist on new FISH + cytogenics

by Multibilly on Sun Dec 08, 2013 2:15 pm

I was going to recommend the same thing Terry just did re Kyprolis

You don't say what your previous cytogenetics were, but I would certainly be asking for an updated FISH and genetic test as you evaluate and research your various treatment options.

Regarding Pomalyst, here is a prelim study wrt to adverse cytogenetics that will be further detailed this week at the ASH.

https://myelomabeacon.org/resources/mtgs/ash2013/abs/689/

You'll see a lot more papers coming out on various trials and studies from the ASH 2013 in the coming days.

You can also consider various trials:

http://clinicaltrials.gov/ct2/results?term=myeloma&recr=Open

[Chaz62]

Re: Should I insist on new FISH + cytogenics

by Chaz62 on Mon Dec 09, 2013 6:51 am

Thanks for the replies!

Yes, Carfilzomib is definately on the table and I'm certainly not opposed to trials. My induction therapy was a trial.

The reason I'm leaning towards Pomalyst right now is quaility of life/convenience. I'm currently still working full time and consider oral therapy to be less impactful of my work schedule.


The two FISH and genetics tests I've had show standard risk. Both were prior to ASCT. No deletions or translocations or anything unusual. I have read that this can change over the course of our disease though. Especially after having had a transplant?

[Dr. Peter Voorhees]

Re: Should I insist on new FISH + cytogenics

by Dr. Peter Voorhees on Mon Dec 09, 2013 11:27 pm

There is a reasonable chance that your disease has acquired new cytogenetic abnormalities or has acquired other markers of more aggressive disease (high risk gene expression profile). However, we know that your disease is higher risk now than it was at diagnosis based on the fact that it is no longer responding to lenalidomide (Revlimid)- or bortezomib (Velcade)-based therapy. As such, a repeat biopsy is not critical unless it needs to be done to better assess the current burden of disease.

Optimal treatment under these situations depends on a number of issues such as previous tolerability of different myeloma drug classes, other medical conditions that can impact the likelihood of certain side effects, whether the dose and schedule of the previous regimen(s) was optimal, etc.

If insurance would allow, I would go with carfilzomib, pomalidomide and dexamethasone (all together). If insurance balks and the choice is pom-dex or carfilzomib, I would go with pom-dex. The response rate of carfilzomib in bortezomib-resistant disease is not that robust. A clinical trial (e.g. a monoclonal CD38 antibody) would be another worthy consideration.

Hang in there and good luck!

Pete V.

[Chaz62]

Re: Should I insist on new FISH + cytogenics

by Chaz62 on Wed Dec 11, 2013 8:09 am

[quote="Dr. Peter Voorhees"]
If insurance would allow, I would go with carfilzomib, pomalidomide and dexamethasone (all together). If insurance balks and the choice is pom-dex or carfilzomib, I would go with pom-dex. The response rate of carfilzomib in bortezomib-resistant disease is not that robust. A clinical trial (e.g. a monoclonal CD38 antibody) would be another worthy consideration.

Hang in there and good luck!

Pete V.[/quote]

Thanks Doc! Good points and so far I have had no issues with insurance approvals. I'll definately bring this up with my Onc tomorrow. She's been at ASH so she should be armed with all the latest greatest info too.

Thanks again,
Chuck