[allmanb1953]

Am I likely to relapse quickly?

by allmanb1953 on Sat Feb 17, 2018 1:48 pm

Hello,

I have been reading this forum off and on for a while and now have a question (thank you all for all of your answers to my many other questions via your own experiences that I have come across so far).

I was diagnosed with multiple myeloma in December of 2016. My doctor put me on Revlimid 25 mg 21 days on and 7 days off along with 20 mg dexamethasone every 7 days. When diagnosed, my M-spike had elevated from 1.3 g/dL (13 g/l) in 2014 to 1.8 g/dL, and my other numbers suddenly started doubling every month.

To name a few:

December 2016:

IgG was 2515
M-spike - 1.8
Kappa-lamdda ratio was up to 24.33
I was anemic and had Feraheme (ferumoxytol) infusions
Bone marrow biopsy showed 30%+

I can give more details if necessary. In October, my doctor took me off of the dex as I did not like it and in December of this year, he put me on maintenance of 10 mg Revlimid every day. The numbers then had been plateauing, not as low as most people who take the drugs but:

December 2017
IgG - 1665
M-spike - 1.0
Kappa-lambda ratio - 2.53
Anemia on the edge (after 2 or 3 infusions in the past year and a half).
No bone marrow biopsy done.

As of today, February 17, the numbers are pretty much stable, these numbers were taken including the rest of the 25 mg doses and then about one-month worth of 10 mg / day:

February 2018:
IgG - 1712
M-spike - 1.0
Kappa-lambda ratio - 2.4
Anemia on the edge but slightly worse, no infusion necessary yet
No bone marrow biopsy done.
Low D and low B-12

My question is, although I know this disease is not predictable, do my results so far suggest I'm likely to relapse soon? Most people’s numbers go down to almost normal after only a few months on Revlimid and dexamethasone, and although mine went down, they didn’t go to normal. Is this a case where at any moment, the numbers could start increasing again rapidly?

Any comments would be greatly appreciated.

Barbara

[Ron Harvot]

Re: Am I likely to relapse quickly?

by Ron Harvot on Mon Feb 19, 2018 5:57 pm

The initial protocol you were on was somewhat light. You only had Revlimid and dexa­metha­sone. It is common now for the initial treatment regimen to be a triplet, such as VRD (Velcade, Revlimid, and dexamethasone). Usually a shot of Velcade once a week, 10 mg of Revlimid on 21 days off 7, and 40 mg of dexamethasone once a week.

They did a bone marrow biopsy initially, but did they do a FISH to determine if you had any chromosome abnormalities / deletions and thus are classified high or standard risk?

You have had a very good partial response with just the Revlimid and dex. You might ask your oncologist about your FISH results and whether he might consider prescribing a proteasome inhibitor, such as Velcade, in addition to Revlimid and dexamethasone.

Did you have a conversation about a stem cell transplant?

No way to tell right now if you will relapse quickly or not. Generally it does not sound like you are high risk since the initial protocol was not very aggressive.

[Mike F]

Re: Am I likely to relapse quickly?

by Mike F on Wed Feb 21, 2018 6:09 pm

For what it's worth, I was on only Revlimid and dexamethasone for six months in preparation for my stem cell transplant, and I got to the "very good partial response" (VGPR) level with that regimen. We then decided to throw some Velcade into the mix, and I did one cycle of Revlimid, Velcade, and high-dose dexamethasone. My M-spike and free light chain numbers dropped like a rock and threw me into "complete response" (CR) territory.

So I agree with Ron that you might talk to your doctor about adding Velcade.

[allmanb1953]

Re: Am I likely to relapse quickly?

by allmanb1953 on Sat Apr 07, 2018 12:38 am

Hi!

I'm so sorry not to respond sooner, been out of the country and then couldn't find this thread (OK, I know, I blame the Revlinid for the brain fogginess; that's my story and I'm sticking to it

I did have the FISH study:

ABNORMAL enriched multiple myeloma FISH profile
Negative for deletion of 1p (CDKN2C) or amplification of 1q (CKS1B)
Negative for trisomy 7 and trisomy 9
Positive for -13
Negative for p53 deletion (17p13)
Positive for a variant t(11:14)(q13;q32)
Prognostic Significance: Neutral to favorable

There was more on the report, but I think this is the significant portion.

I had my bloodwork done again today so will see how the anemia and white blood cell and other items are doing.

Thanks!

Barbara

[Ron Harvot]

Re: Am I likely to relapse quickly?

by Ron Harvot on Sun Apr 08, 2018 11:00 pm

Barbara,

Your FISH came back good so you are not high risk. You appear to fit the profile of standard risk.