My understanding is that different multiple myeloma treatment centers have different criteria for accepting multiple myeloma patients for autologous stem cell transplants (ASCTs). To date, my husband has not met Stanford's very good partial response (VGPR) criteria. We are still hoping for it. His starting point was 2.9 g/dL (29 g/l) M-spike before any treatment, and after several treatment regimens, he is currently starting to respond to Darzalex and is at 1.1 g/dL (11 g/l) M-spike.
My husband also has some heart issues that were aggravated recently, possibly due to the use of Kyprolis, and some new kidney issues (creatinine too high and going up, eGFR going down).
I am wondering what sort of outcome to expect from a transplant if the response to treatment going into the transplant is not at least a very good partial response (VGPR).
We are going for a second opinion at UCSF and any info here will help me ask the right questions.
Thanks in advance for any input here. These forums have provided us with so much valuable information!
Forums
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Alizabeth - Name: Alizabeth
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 61
Re: Less than VGPR pre-stem cell transplant: what to expect?
Hello Alizabeth,
I'm really sorry to hear how difficult it's been for your husband to get a deep response to initial treatment.
I've gone through your previous posts and put together this summary of the treatments your husband has had since his diagnosis and what has happened to his M-spike in response to the treatments. I wasn't able to fill out the table completely – there was some information I couldn't find – but maybe the table will be useful to you for your upcoming appointment.
Initial M-spike: 2.7 g/dL
1. Revlimid, Velcade, dexamethasone - 4 months
Response: M-spike to 1.4 - 1.5 g/dL
2. Revlimid, Kyprolis, dexamethasone - ? months
Response: M-spike to 1.0, but then back up to 1.3 after Revlimid dose reduction
3. Kyprolis, cyclophosphamide, dexamethasone - ? months
Response: ?
4. Darzalex, dexamethasone (and Kyprolis?) - ? months
Response: M-spike down to 1.1 g/dL
As an aside, it might be interesting for others here to know what sort of chromosomal abnormalities your husband has, if any.
There are two previous discussions here in the forum that you may find helpful given your husband's situation. The first is this one about response to treatment prior to transplant:
"Response to induction treatment prior to transplant?" (started Apr 27, 2015)
The second, which is more general (and a lot longer), is this one about response and survival overall:
"Does a deeper response mean longer overall survival?" (started Sep 14, 2016)
Now, I'm not a physician, but given all the different treatments your husband has had so far, I wonder if it's time to try the transplant route – or more specifically, the high-dose melphalan that is the actual treatment during the transplant process. As you've probably already read here in the forum, melphalan is highly active against multiple myeloma.
One thing I would ask at your upcoming appointment is whether your husband's response to the Kyprolis, cyclophosphamide, and dexamethasone has any relevance to whether or not he will respond to high-dose melphalan during the transplant process. Cyclophosphamide and melphalan are in the same class of drugs, which is why I raise the issue.
Given the challenge's of your husband's case, it is good that you are consulting with multiple myeloma specialists. They will have exactly the sort of experience and knowledge needed in this sort of situation.
Good luck!
I'm really sorry to hear how difficult it's been for your husband to get a deep response to initial treatment.
I've gone through your previous posts and put together this summary of the treatments your husband has had since his diagnosis and what has happened to his M-spike in response to the treatments. I wasn't able to fill out the table completely – there was some information I couldn't find – but maybe the table will be useful to you for your upcoming appointment.
Initial M-spike: 2.7 g/dL
1. Revlimid, Velcade, dexamethasone - 4 months
Response: M-spike to 1.4 - 1.5 g/dL
2. Revlimid, Kyprolis, dexamethasone - ? months
Response: M-spike to 1.0, but then back up to 1.3 after Revlimid dose reduction
3. Kyprolis, cyclophosphamide, dexamethasone - ? months
Response: ?
4. Darzalex, dexamethasone (and Kyprolis?) - ? months
Response: M-spike down to 1.1 g/dL
As an aside, it might be interesting for others here to know what sort of chromosomal abnormalities your husband has, if any.
There are two previous discussions here in the forum that you may find helpful given your husband's situation. The first is this one about response to treatment prior to transplant:
"Response to induction treatment prior to transplant?" (started Apr 27, 2015)
The second, which is more general (and a lot longer), is this one about response and survival overall:
"Does a deeper response mean longer overall survival?" (started Sep 14, 2016)
Now, I'm not a physician, but given all the different treatments your husband has had so far, I wonder if it's time to try the transplant route – or more specifically, the high-dose melphalan that is the actual treatment during the transplant process. As you've probably already read here in the forum, melphalan is highly active against multiple myeloma.
One thing I would ask at your upcoming appointment is whether your husband's response to the Kyprolis, cyclophosphamide, and dexamethasone has any relevance to whether or not he will respond to high-dose melphalan during the transplant process. Cyclophosphamide and melphalan are in the same class of drugs, which is why I raise the issue.
Given the challenge's of your husband's case, it is good that you are consulting with multiple myeloma specialists. They will have exactly the sort of experience and knowledge needed in this sort of situation.
Good luck!
Re: Less than VGPR pre-stem cell transplant: what to expect?
Hello Cheryl,
Thank you so much for your response and for the links to previous threads and articles. These are very helpful! I think I saw some of these in the past, but back then I didn't have the same questions I have today so I didn't recall them.
Since you went to the trouble of fishing out my husband's history (thanks!), I dug into our health system portal's medical records to provide more precise info (things were very dynamic for us for a while as you can see below):
Initial M-spike: 2.7 g/dL
Chromosomal abnormalities: FISH results declared "normal," meaning none
of the high-risk abnormalities are present.
1. Revlimid, Velcade, dexamethasone - 4 months (5 cycles)
Response: M-spike to 1.4 - 1.5 g/dL
2. Revlimid, Kyprolis, dexamethasone - 1 cycle + 1 partial cycle (~2 months)
Response: M-spike to 1.0 g/dL, but then back up to 1.3 g/dL after
Revlimid dose reduction
3. Kyprolis, cyclophosphamide, dexamethasone - 1 cycle (1 month)
Response: M-spike to 1.1 g/dL
But: Shortness of breath, heart failure, hospitalization, no treatment for a month
-> M-spike up to 1.5, back pain worsens.
4. Darzalex, dexamethasone (no Kyprolis) - 1.5 months so far
Response: M-spike down to 1.1 g/dL, back pain lessens
We did see the UCSF doctor today to review our case and we asked our questions.
Regarding the question of response to Cytoxan (cyclophosphamide) and relevance to transplant, the answer there is that the difference in dosage is very big, so the expectation is that there will be a response. As you see above, there was some response to the Kyprolis, Cytoxan, and dexamethasone treatment, but this treatment had to be stopped after just one cycle, so the response was not significant.
Regarding doing a transplant even if response cannot be improved much (which we still hope it will!), the doctor's answer was consistent with the discussions and article you pointed to: Yes, a transplant is an option, and as you said, we should pursue it sooner rather than later regardless of further response.
Thanks again!
Alizabeth
Thank you so much for your response and for the links to previous threads and articles. These are very helpful! I think I saw some of these in the past, but back then I didn't have the same questions I have today so I didn't recall them.
Since you went to the trouble of fishing out my husband's history (thanks!), I dug into our health system portal's medical records to provide more precise info (things were very dynamic for us for a while as you can see below):
Initial M-spike: 2.7 g/dL
Chromosomal abnormalities: FISH results declared "normal," meaning none
of the high-risk abnormalities are present.
1. Revlimid, Velcade, dexamethasone - 4 months (5 cycles)
Response: M-spike to 1.4 - 1.5 g/dL
2. Revlimid, Kyprolis, dexamethasone - 1 cycle + 1 partial cycle (~2 months)
Response: M-spike to 1.0 g/dL, but then back up to 1.3 g/dL after
Revlimid dose reduction
3. Kyprolis, cyclophosphamide, dexamethasone - 1 cycle (1 month)
Response: M-spike to 1.1 g/dL
But: Shortness of breath, heart failure, hospitalization, no treatment for a month
-> M-spike up to 1.5, back pain worsens.
4. Darzalex, dexamethasone (no Kyprolis) - 1.5 months so far
Response: M-spike down to 1.1 g/dL, back pain lessens
We did see the UCSF doctor today to review our case and we asked our questions.
Regarding the question of response to Cytoxan (cyclophosphamide) and relevance to transplant, the answer there is that the difference in dosage is very big, so the expectation is that there will be a response. As you see above, there was some response to the Kyprolis, Cytoxan, and dexamethasone treatment, but this treatment had to be stopped after just one cycle, so the response was not significant.
Regarding doing a transplant even if response cannot be improved much (which we still hope it will!), the doctor's answer was consistent with the discussions and article you pointed to: Yes, a transplant is an option, and as you said, we should pursue it sooner rather than later regardless of further response.
Thanks again!
Alizabeth
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Alizabeth - Name: Alizabeth
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 61
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