Hi everyone,
Today mom has not gotten the best news. We are nearing auto system cell transplantation with the Neupogen injections to be started on Friday.
Let me give a little history. Mom was diagnosed December 2014. With aggressive myeloma with 50% cell involvement. She began a treatment therapy of Revlimid, Velcade, and dexamethasone (RVD) with Zometa. Which she responded to very well.
Well her 4th round of Revlimid ended April 6 2015. She continued with the Zometa and Velcade injections up until now. The physician ordered another SPEP test and noticed an increase in plasma cells. I am thinking this is in part from being off the Revlimid. The physician says this shows the aggressiveness of the disease. The decision is to move on with transplant.
My question is have any of you experienced this happening before transplant?
Please help. I'm scared for mom.
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Re: Not so good news after stopping Revlimid during RVD
I have read of this happening before. In one case, the patient's transplant kept being postponed due to funding issues, and every time he would come off the Revlimid and his transplant funding would fall through, causing his transplant to be moved back, his M-spike would come up and then he'd have to go back on Revlimid and wait for them to come back down.
I think it can be pretty common in more " aggressive" disease. However, the transplant should take care of this as melphalan is heavy duty. Revlimid can make stem cell collection more difficult, so it is necessary to stop it. She should move forward with transplant ASAP.
I think it can be pretty common in more " aggressive" disease. However, the transplant should take care of this as melphalan is heavy duty. Revlimid can make stem cell collection more difficult, so it is necessary to stop it. She should move forward with transplant ASAP.
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Not so good news after stopping Revlimid during RVD
Good morning Jaren:
I was keenly interested in this question for my wife's autologous stem cell transplant (ASCT) in February and asked the doctors lots of questions. You did not go into the numbers. An increase in M-Spike of 0.1 g/dL indicated on 1 reading is within measurement error. If it's an 0.2 increase, then that has an outside chance of being within measurement error, and is no big deal. At 0.3 or more, it is probably an issue, but since its only one measurement, it could also just be a bad reading (possible, not likely).
In any case, if the ASCT is in the plans anyway, the thing to do is to stay on schedule. It's a complementary treatment to the induction drugs. You could think of the situation in somewhat simplistic terms as follows. Some of the myeloma responded well to the drugs, some did not. The ASCT (melphalan) is a different class of drugs / treatments and is probably the best thing to do to attack the leftover "bad" myeloma.
Good Luck
JPC
I was keenly interested in this question for my wife's autologous stem cell transplant (ASCT) in February and asked the doctors lots of questions. You did not go into the numbers. An increase in M-Spike of 0.1 g/dL indicated on 1 reading is within measurement error. If it's an 0.2 increase, then that has an outside chance of being within measurement error, and is no big deal. At 0.3 or more, it is probably an issue, but since its only one measurement, it could also just be a bad reading (possible, not likely).
In any case, if the ASCT is in the plans anyway, the thing to do is to stay on schedule. It's a complementary treatment to the induction drugs. You could think of the situation in somewhat simplistic terms as follows. Some of the myeloma responded well to the drugs, some did not. The ASCT (melphalan) is a different class of drugs / treatments and is probably the best thing to do to attack the leftover "bad" myeloma.
Good Luck
JPC
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JPC - Name: JPC
Re: Not so good news after stopping Revlimid during RVD
JPC,
Thank you for your response. I don't have the actual numbers of my mother's M-spike. I am awaiting a call from her oncologist for those numbers. I can tell you that my mother now has a presence of 25% myeloma cells and not the 50% that she started with. However, after her last SPEP test, the oncologist seemed to worry about the numbers going up. I feel like she is not responding to the Velcade and dexamethasone alone. I think it was really the Revlimid itself that erased most of the myeloma cells,
However, with the transplant nearing, I did not want to take a chance and try Revlimid again and hope for a response, for several reasons.
So as of Friday, she has started her Neupogen injections. She will inject Friday, Saturday, Sunday, and Monday. Monday the plan is to have enough to collect for 2 stem cell transplants. I pray that we get enough for 3 transplants.
Blair77,
Yes, the oncologist did state that my mother's myeloma is showing its aggressiveness. So there is no doubt that she will need a maintenance therapy after SCT. Luckily we have not had any funding issues so far. We are scheduled to be hospitalized no later than Wednesday.
Again, thanks for your responses.
Thank you for your response. I don't have the actual numbers of my mother's M-spike. I am awaiting a call from her oncologist for those numbers. I can tell you that my mother now has a presence of 25% myeloma cells and not the 50% that she started with. However, after her last SPEP test, the oncologist seemed to worry about the numbers going up. I feel like she is not responding to the Velcade and dexamethasone alone. I think it was really the Revlimid itself that erased most of the myeloma cells,
However, with the transplant nearing, I did not want to take a chance and try Revlimid again and hope for a response, for several reasons.
- What happens if she doesn't respond to Revlimid this time?
- If no response, then we have a higher percentage of myeloma cells and possibly no chance for SCT?
- What if another major organ is affected, which would also delay SCT?
So as of Friday, she has started her Neupogen injections. She will inject Friday, Saturday, Sunday, and Monday. Monday the plan is to have enough to collect for 2 stem cell transplants. I pray that we get enough for 3 transplants.
Blair77,
Yes, the oncologist did state that my mother's myeloma is showing its aggressiveness. So there is no doubt that she will need a maintenance therapy after SCT. Luckily we have not had any funding issues so far. We are scheduled to be hospitalized no later than Wednesday.
Again, thanks for your responses.
Re: Not so good news after stopping Revlimid during RVD
Hello, Jaren:
I am guessing the only reason that Revlimid was stopped was the 4 week process usually given to collect stem cells. Our transplant doctor indicated that 4 or even 5 rounds of Revlimid does not harm that process, but 6 or more starts to suppress generation of the stem cells. The 4 week Revlimid holiday, however, is necessary, and unavoidable. In the case of my wife, there was a minor tick up in the M-spike which was less than 0.1. This was originally very worrisome, but the doctor explained it very well as not a big issue.
The transplant itself is somewhat of an ordeal, with greatly different responses in terms of side effects. Some people sail through, others have GI issues and could loose 20 pounds. If it gets the good result, however, most of the posters will tell you that the unpleasant aspects pass, and was worth it, though there is no guarantee of course that it will be successful in reducing the multiple myeloma.
Couple of thoughts to consider post transplant. Consolidation is 3 or 4 full rounds of treatment after transplant. If your mother has aggressive disease, something to talk to your doctor about. Second, your mother seems to respond to Revlimid. Revlimid maintenance is something very commonly prescribed. Third, there is the concept of RVD maintenance which is sometimes prescribed for high-risk, aggressive cases, which is the full triplet, but at a lower dose.
Again, good luck. JPC
I am guessing the only reason that Revlimid was stopped was the 4 week process usually given to collect stem cells. Our transplant doctor indicated that 4 or even 5 rounds of Revlimid does not harm that process, but 6 or more starts to suppress generation of the stem cells. The 4 week Revlimid holiday, however, is necessary, and unavoidable. In the case of my wife, there was a minor tick up in the M-spike which was less than 0.1. This was originally very worrisome, but the doctor explained it very well as not a big issue.
The transplant itself is somewhat of an ordeal, with greatly different responses in terms of side effects. Some people sail through, others have GI issues and could loose 20 pounds. If it gets the good result, however, most of the posters will tell you that the unpleasant aspects pass, and was worth it, though there is no guarantee of course that it will be successful in reducing the multiple myeloma.
Couple of thoughts to consider post transplant. Consolidation is 3 or 4 full rounds of treatment after transplant. If your mother has aggressive disease, something to talk to your doctor about. Second, your mother seems to respond to Revlimid. Revlimid maintenance is something very commonly prescribed. Third, there is the concept of RVD maintenance which is sometimes prescribed for high-risk, aggressive cases, which is the full triplet, but at a lower dose.
Again, good luck. JPC
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JPC - Name: JPC
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