Hello Maro:
Just a couple of thoughts from my research. As you point out, the issue was not the response to the treatment, which was somewhat better than average to that particular treatment, but the short time of first relapse. On the good side, this is all before symptoms (and hopefully will stay that way for a long time). I have heard and read Dr. Moreau speak a couple of times, and am familiar with the French approach, which overall I understand is quite good, but in this particular case, with the benefit of hindsight, the American approach, with a triplet, might have done your mother better.
Very generally, the duration of second relapse is shorter than the first relapse. This would not be good. The way to potentially change this is get a deeper response, which is entirely possible, since you used only a doublet the first time. The triplet to be used has two classes (PI's and alkylator) not used before, and has a very good chance of working well. My very general (non-medical, as you know) thought to you is to try and get to a complete response (CR) and/or MRD-. A response similar to the first time would very likely not result in a long remission. So, see if she gets there with the CyBorD (cyclophosphamide, Velcade, and dex). If she gets less than a CR, I would inquire with the medical team of how to get there. One option mentioned by a couple of posters is Kyprolis. In particular, look at some of the very good postings by Mr. Potatohead.
As to staging, I would not even consider that at this stage. I think that the story for your mother is that she is a responder, but seems to need a deep response. And again, the bright side, no symptoms yet. Good luck.
Forums
Re: Is this a good response to Revlimid and dexamethasone?
Thank you for your point of view JPC.
Yes, you are right, a deeper response is what we should be seeking and what we needed to do in the first place. At the time we chose this trial because we had a chance to possibly fall into the daratumumab group, which unfortunately did not happen. It was either this trial or VMP (Velcade, melphalan, and prednisone), and for some reason I was not very keen about that one. My mother was pretty depressed at the start and the Revlimid-dexamethasone combo helped her psychologically because it did not require going to hospital and was convenient.
Regarding the current state, we just completed 4 shots of Velcade with dex. The doctor will introduce cyclophosphamide as of cycle two (they don't go strong on first cycle here).
We'll also most probably make it on our holiday trip if the response to first cycle is good, which I really hope for. My mom would be devastated if we would not travel together.
I'll keep you posted as soon as I know how she responded to her first cycle of Velcade + dex (without cyclophosphamide one cycle 1).
Wishing you well.
Maro
Yes, you are right, a deeper response is what we should be seeking and what we needed to do in the first place. At the time we chose this trial because we had a chance to possibly fall into the daratumumab group, which unfortunately did not happen. It was either this trial or VMP (Velcade, melphalan, and prednisone), and for some reason I was not very keen about that one. My mother was pretty depressed at the start and the Revlimid-dexamethasone combo helped her psychologically because it did not require going to hospital and was convenient.
Regarding the current state, we just completed 4 shots of Velcade with dex. The doctor will introduce cyclophosphamide as of cycle two (they don't go strong on first cycle here).
We'll also most probably make it on our holiday trip if the response to first cycle is good, which I really hope for. My mom would be devastated if we would not travel together.
I'll keep you posted as soon as I know how she responded to her first cycle of Velcade + dex (without cyclophosphamide one cycle 1).
Wishing you well.
Maro
-
Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Is this a good response to Revlimid and dexamethasone?
Hello everyone,
I am worried sick at the moment. My mother received the first results following her first cycle of Velcade + dexamethasone.
The M-spike has risen to 50 g/l (5 g/dL) despite the Velcade. However, most of her markers are OK (CRAB markers) except for creatinine, which is at 13,2g/L (CRAB is when it is > 20 g/L or 2 g/dL).
Now the Cytoxan has not yet been added. It will be as of the second cycle, so I am hopeful that perhaps the second cycle will bring some better results.
LDH is also worrisome. It is at 692 U/L and she has been experiencing leg pain, which the doctor seems to be qualifying as a sciatic nerve inflammation.
We are meant to go on holiday on 28th July. This is all going so wrong. Any thoughts would be helpful.
I am worried sick at the moment. My mother received the first results following her first cycle of Velcade + dexamethasone.
The M-spike has risen to 50 g/l (5 g/dL) despite the Velcade. However, most of her markers are OK (CRAB markers) except for creatinine, which is at 13,2g/L (CRAB is when it is > 20 g/L or 2 g/dL).
Now the Cytoxan has not yet been added. It will be as of the second cycle, so I am hopeful that perhaps the second cycle will bring some better results.
LDH is also worrisome. It is at 692 U/L and she has been experiencing leg pain, which the doctor seems to be qualifying as a sciatic nerve inflammation.
We are meant to go on holiday on 28th July. This is all going so wrong. Any thoughts would be helpful.
-
Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Is this a good response to Revlimid and dexamethasone?
Bonjour Maro,
I am sorry that your mother's blood counts are going up, but at least you are still in the lower range of myeloma problems, having no CRAB symptoms, except for creatinine.
I imagine that with the treatments you would need to go in regularly to your cancer centre, perhaps once a week or more often? This would be complicated with being on holiday, but could you transfer the treatments to a nearby hospital (I think you are going somewhere in France, your home country?). Otherwise I wonder if you would consider postponing a holiday so that your mother could stay up with the chemotherapy treatments. Or perhaps having another friend or relative to take her to the treatment centre in your home city, while you and your young family take a break. This is something to discuss with your family and your doctor, though.
Best wishes with everything and I hope the results start to turn around soon.
I am sorry that your mother's blood counts are going up, but at least you are still in the lower range of myeloma problems, having no CRAB symptoms, except for creatinine.
I imagine that with the treatments you would need to go in regularly to your cancer centre, perhaps once a week or more often? This would be complicated with being on holiday, but could you transfer the treatments to a nearby hospital (I think you are going somewhere in France, your home country?). Otherwise I wonder if you would consider postponing a holiday so that your mother could stay up with the chemotherapy treatments. Or perhaps having another friend or relative to take her to the treatment centre in your home city, while you and your young family take a break. This is something to discuss with your family and your doctor, though.
Best wishes with everything and I hope the results start to turn around soon.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Is this a good response to Revlimid and dexamethasone?
Thank you for your response Nancy.
I am now in a dilemma with my mother. The doctor has asked us to cancel our vacation to Cyprus, the M-spike has increased too fast in a short time frame, reaching 50 g/L (5.0 g/dL) while being on Velcade and dexamethasone.
Doctor said to start second cycle since we are adding Cytoxan 500 mg now on day 1, 8 and 15.
She started on Friday – Veclade, Cytoxan 500 mg, and dex.
Here is our dilemma.
The doctor is suggesting a stem cell transplant! My mother is very frightened about this procedure and would rather try other treatments. In France we do have access to Kyprolis (carfilzomib), Pomalyst (pomalidomide, Imnovid), and possibly Darzalex (daratumumab) for triple relapsed patients. I am unsure whether there is access to other medicines yet outside of clinical trials.
Based on my mother's myeloma coming back real quickly after no longer responding to Revlimid at 8th month and her 0 response thus far to Velcade and dex on cycle 1, I really question if the stem cell transplant is going to bring any benefit based on the way her myeloma seems to be acting.
As a reminder, she also has t(14,16).
What would you all do in our place? Accept a stem cell transplant, or give other treatments a shot?
I am starting to become very worried about her condition and the fact that her myeloma seems to be a quick one when it comes to the M-spike increasing so rapidly.
Any thoughts, suggestions, insights would be of great use to us.
Maro
I am now in a dilemma with my mother. The doctor has asked us to cancel our vacation to Cyprus, the M-spike has increased too fast in a short time frame, reaching 50 g/L (5.0 g/dL) while being on Velcade and dexamethasone.
Doctor said to start second cycle since we are adding Cytoxan 500 mg now on day 1, 8 and 15.
She started on Friday – Veclade, Cytoxan 500 mg, and dex.
Here is our dilemma.
The doctor is suggesting a stem cell transplant! My mother is very frightened about this procedure and would rather try other treatments. In France we do have access to Kyprolis (carfilzomib), Pomalyst (pomalidomide, Imnovid), and possibly Darzalex (daratumumab) for triple relapsed patients. I am unsure whether there is access to other medicines yet outside of clinical trials.
Based on my mother's myeloma coming back real quickly after no longer responding to Revlimid at 8th month and her 0 response thus far to Velcade and dex on cycle 1, I really question if the stem cell transplant is going to bring any benefit based on the way her myeloma seems to be acting.
As a reminder, she also has t(14,16).
What would you all do in our place? Accept a stem cell transplant, or give other treatments a shot?
I am starting to become very worried about her condition and the fact that her myeloma seems to be a quick one when it comes to the M-spike increasing so rapidly.
Any thoughts, suggestions, insights would be of great use to us.
Maro
-
Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Return to Treatments & Side Effects