I have been on RVD [Revlimid-Velcade-dexamethasone] for 2 cycles and VD for 1 cycle, the chemo caused neutropenia after each cycle (counteracted with Neulasta/Neupogen). My M-spike went down by 20% during this time. Now my oncologist is suggesting changing to CyborD.
What are my options after RVD? Any clinical trials that I may try, any sense replacing R with Pomalyst?
Any experience or advice would be much appreciated. Thank you
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Re: Options if RVD not working for newly diagnosed myeloma?
Hi hope22,
Sorry to hear about the problems you're having with RVD.
A couple of quick questions that might be helpful as all of us try to come up with some ideas and suggestions for you to discuss with your doctors.
First, RVD was your first treatment after diagnosis, right? You mentioned in one of your earlier postings that you were diagnosed around this March or April.
Second, have your doctors told you anything about your risk classification (low risk, standard risk, high risk, or the like)? Similarly, have you been provided with any information about the chromosomal abnormalities associated with your particular myeloma?
Sorry to hear about the problems you're having with RVD.
A couple of quick questions that might be helpful as all of us try to come up with some ideas and suggestions for you to discuss with your doctors.
First, RVD was your first treatment after diagnosis, right? You mentioned in one of your earlier postings that you were diagnosed around this March or April.
Second, have your doctors told you anything about your risk classification (low risk, standard risk, high risk, or the like)? Similarly, have you been provided with any information about the chromosomal abnormalities associated with your particular myeloma?
Re: Options if RVD not working for newly diagnosed myeloma?
Thank you for your quick reply. I understand from my doctor's report of my cytogenetics that I am standard risk:
no del 17, del 13, t(4, 14), t(6, 14), 1p/1q. Apparently I have tetrasomy 11.
RVD was my first line of treatment, first cycle at 25 mg, neutropenia caused the R dosage to be lowered to 15 mg for the second cycle, and then to 0 for the third cycle. Question is, what treatment to try now?
Any systematic way to search for a clinical trial I would be eligible for in the NYC area?
Many thanks
no del 17, del 13, t(4, 14), t(6, 14), 1p/1q. Apparently I have tetrasomy 11.
RVD was my first line of treatment, first cycle at 25 mg, neutropenia caused the R dosage to be lowered to 15 mg for the second cycle, and then to 0 for the third cycle. Question is, what treatment to try now?
Any systematic way to search for a clinical trial I would be eligible for in the NYC area?
Many thanks
Re: Options if RVD not working for newly diagnosed myeloma?
Hi hope22,
When you wrote,
"no del 17, del 13, t(4, 14), t(6, 14), 1p/1q"
did you mean that you have none of the chromosomal abnormalities that you listed in that sentence?
It may be a bit soon to be thinking of something drastically different from the RVD that you've been taking. There is something to be said for holding other treatments in reserve for as long as possible. (Fair disclosure: We're not doctors, so by far the best advice you're going to get on the topic is not from us, but from myeloma specialists.)
The advanced search function at http://www.clinicaltrials.gov allows you to search by location, condition, etc. Type in "myeloma" as the condition and choose a state, etc., and then search away.
Here are the search results for a search on myeloma-related trials that are currently open and recruiting participants at locations in New York, New Jersey, and Connecticut.
The database at clinicaltrials.gov is just about as comprehensive a database as you'll find.
And, for our ex-U.S. readers ... clinicaltrials.gov also is rather comprehensive when it comes to trials being conducted outside the U.S. It is by no means a U.S.-only database of clinical trials.
When you wrote,
"no del 17, del 13, t(4, 14), t(6, 14), 1p/1q"
did you mean that you have none of the chromosomal abnormalities that you listed in that sentence?
It may be a bit soon to be thinking of something drastically different from the RVD that you've been taking. There is something to be said for holding other treatments in reserve for as long as possible. (Fair disclosure: We're not doctors, so by far the best advice you're going to get on the topic is not from us, but from myeloma specialists.)
The advanced search function at http://www.clinicaltrials.gov allows you to search by location, condition, etc. Type in "myeloma" as the condition and choose a state, etc., and then search away.
Here are the search results for a search on myeloma-related trials that are currently open and recruiting participants at locations in New York, New Jersey, and Connecticut.
The database at clinicaltrials.gov is just about as comprehensive a database as you'll find.
And, for our ex-U.S. readers ... clinicaltrials.gov also is rather comprehensive when it comes to trials being conducted outside the U.S. It is by no means a U.S.-only database of clinical trials.
Re: Options if RVD not working for newly diagnosed myeloma?
I wonder why your oncologist isn't trying Vd instead of RVd before going to Cytoxan in the mix. Many people respond very well to the Velcade and dex combination. Revlimid is well known to cause neutropenia. I, myself, am currently on a break from Rev because I developed neutropenia since my last bloodwork in April and the most current bloodwork last week. My oncologist is going to see me next week to see if my numbers have recovered and then if so will lower my Rev dose or possibly switch to Velcade by itself. I have been taking 15 mg of Rev for 18 months for relapse.
Nancy in Phila
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Options if RVD not working for newly diagnosed myeloma?
Thank you Beacon Staff for your reply
Indeed, that is what I meant about no del .
Do you think I qualify for clinical trials for relapsed or refractory multiple myeloma? Any thoughts on switching from R to Pomalyst?
@nstewart, I was on VD for 1 cycle but do not know how the blood tests have evolved.
Thank you so much
Indeed, that is what I meant about no del .
Do you think I qualify for clinical trials for relapsed or refractory multiple myeloma? Any thoughts on switching from R to Pomalyst?
@nstewart, I was on VD for 1 cycle but do not know how the blood tests have evolved.
Thank you so much
Re: Options if RVD not working for newly diagnosed myeloma?
I doubt very much that you would qualify for any relapsed/refractory clinical trials, hope22, given your numbers and treatment history. You haven't really relapsed, you've just not (yet) gotten a deep response to your initial treatment.
In fact, now that you mention eligibility, it's probably the case that you probably are not eligible for most trials at this point given that you're currently on treatment, and you haven't relapsed. You can switch your treatment regimen in any way that you and your doctor want to, but I don't think it will be possible to do it as part of a clinical trial.
I agree with Nancy when she says that you should probably try the Velcade-dex regimen for a while to see how it works for you. Also, if your white counts recover enough, your could bring Revlimid back into the regimen. You don't have to do it at the full 25 mg dose. You can do it at a lower dose, like 15 mg or 10 mg or even start at 5 mg.
Are you currently planning on doing a stem cell transplant after the initial therapy?
Also, are you getting the Velcade by injection or by infusion?
Good luck and hang in there!
In fact, now that you mention eligibility, it's probably the case that you probably are not eligible for most trials at this point given that you're currently on treatment, and you haven't relapsed. You can switch your treatment regimen in any way that you and your doctor want to, but I don't think it will be possible to do it as part of a clinical trial.
I agree with Nancy when she says that you should probably try the Velcade-dex regimen for a while to see how it works for you. Also, if your white counts recover enough, your could bring Revlimid back into the regimen. You don't have to do it at the full 25 mg dose. You can do it at a lower dose, like 15 mg or 10 mg or even start at 5 mg.
Are you currently planning on doing a stem cell transplant after the initial therapy?
Also, are you getting the Velcade by injection or by infusion?
Good luck and hang in there!
-
Jonah
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