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No response to treatment and transplant-ineligible
I have an interesting challenge. I have been exposed to all the novel agents but one (Revlimid) as well as a cocktail of chemo agents (cisplatin, etoposide, cyclophosphamide, adriamyacin) with no response. My stem cells do not migrate from the marrow. In other words I am starting out in the refractory category with an inability to have a bone marrow transplant. My only symptoms to date are severe anemia. Suggestions.
Re: No response to treatment and transplant-ineligible
Dear Gary,
I am sorry to hear you are having such a tough time. It sounds like you were treated with VDT-PACE (Velcade, dexamethasone, thalidomide, cisplatin, adriamycin, cyclophosphamide, and etoposide). How many cycles did you receive? When you say you had no response, what does that mean? Did the disease actually progress/grow during treatment, did you have stable disease with treatment (no worse, no better on treatment), or did you have a decrease in disease burden that was considered sub-optimal in light of the agressive nature of the therapy you received? These may seem like subtle distinctions, but there are varying degrees of resistance to chemotherapy, and it may be reasonable to incorporate one or more of the drugs in the VDT-PACE regimen into your subsequent therapy. In other words, we need to be careful not to throw out the baby with the bath water.
If you can answer my questions above, I will do my best to provide you with some guidance as to your next steps.
Take care and good luck!
Pete V.
I am sorry to hear you are having such a tough time. It sounds like you were treated with VDT-PACE (Velcade, dexamethasone, thalidomide, cisplatin, adriamycin, cyclophosphamide, and etoposide). How many cycles did you receive? When you say you had no response, what does that mean? Did the disease actually progress/grow during treatment, did you have stable disease with treatment (no worse, no better on treatment), or did you have a decrease in disease burden that was considered sub-optimal in light of the agressive nature of the therapy you received? These may seem like subtle distinctions, but there are varying degrees of resistance to chemotherapy, and it may be reasonable to incorporate one or more of the drugs in the VDT-PACE regimen into your subsequent therapy. In other words, we need to be careful not to throw out the baby with the bath water.
If you can answer my questions above, I will do my best to provide you with some guidance as to your next steps.
Take care and good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: No response to treatment and transplant-ineligible
Doctor: Thank you for your reply and questions. Let me try to answer them..
I was given one cycle of VTD-PACE. My myeloma markers dropped significantly and then returned to their original state in a few days. According to my oncologist, I destroyed the markers in my blood but not the myeloma in my marrow. Why only one cycle? Since I am a "spry" 70 the docs felt that I would be a candidate for stem cell transplant. However, following the VTD-PACE I could not harvest any stem cells despite the use of Mozobil. Following a two month rest period, an Etoposide/GCSF combo was used to harvest stem cells. No success. Since I had no bone or kidney issues we waited another six months (no treatment)and made another pass at harvesting with GCSF and Mozobil and Hyperbaric chamber. This time I yielded 5,000,000 cells. We waited another three months and tried to harvest again. No luck. In fact GCSF did not even increase my WBC's.
That is where we sit today. I am classified as refractory. My M spike is 4.0. My IgG=5500 and My Lambda is 550. The levels have increased about 30% from the VTD-PACE treatment about a year ago. I am neutropenic and severely anemic getting blood transfusions on a monthly bases. I should point out that the level of multiple myeloma in my bone marrow is only about 10%. I have been told that I have very active multiple myeloma but a low load. Present treatment is palliative until the docs can decide what to do or until renal/bone issues arise.
Any suggestions. I would be glad to provide any additional information.
Gary
I was given one cycle of VTD-PACE. My myeloma markers dropped significantly and then returned to their original state in a few days. According to my oncologist, I destroyed the markers in my blood but not the myeloma in my marrow. Why only one cycle? Since I am a "spry" 70 the docs felt that I would be a candidate for stem cell transplant. However, following the VTD-PACE I could not harvest any stem cells despite the use of Mozobil. Following a two month rest period, an Etoposide/GCSF combo was used to harvest stem cells. No success. Since I had no bone or kidney issues we waited another six months (no treatment)and made another pass at harvesting with GCSF and Mozobil and Hyperbaric chamber. This time I yielded 5,000,000 cells. We waited another three months and tried to harvest again. No luck. In fact GCSF did not even increase my WBC's.
That is where we sit today. I am classified as refractory. My M spike is 4.0. My IgG=5500 and My Lambda is 550. The levels have increased about 30% from the VTD-PACE treatment about a year ago. I am neutropenic and severely anemic getting blood transfusions on a monthly bases. I should point out that the level of multiple myeloma in my bone marrow is only about 10%. I have been told that I have very active multiple myeloma but a low load. Present treatment is palliative until the docs can decide what to do or until renal/bone issues arise.
Any suggestions. I would be glad to provide any additional information.
Gary
Re: No response to treatment and transplant-ineligible
Dear Gary,
With only one cycle of chemotherapy under your belt, it is hard to say that your disease is refractory. However, your case is unique in that there is a considerable degree of bone marrow failure associated with it. I am surprised that there is only 10% marrow involvement. With that degree of anemia and neutropenia, I would have expected more. This could mean that there was a sampling error (myeloma is a patchy disease - the biopsy may have sampled a less heavily affected area), there is a co-existing condition affecting your bone marrow function, or your myeloma has altered the bone marrow environment to the point that you are not making neutrophils and red cells appropriately (regardless of disease burden).
I would ensure that alternative causes of anemia and low neutrophil counts have been sought, although I bet your physicians did this a long time ago. I suspect you are being followed at an institution with a good deal of experience in myeloma based on your description of your case, but it never hurts to consider a fresh look at the situation if you are uncomfortable with where things stand. As far as when to re-treat you and with what agent(s), that is probably beyond the scope of this forum given the complexities of your case. You note that you have not received Revlimid previously, so a regimen incorporating this drug would be one logical option once it is decided you need therapy.
The good news is that you have been spared bone and kidney-related complications of myeloma and your disease has not progressed significantly despite having only received one cycle of therapy and being off therapy for a very extended period of time! Let's hope things stay that way. Good luck and take care!
Pete V.
With only one cycle of chemotherapy under your belt, it is hard to say that your disease is refractory. However, your case is unique in that there is a considerable degree of bone marrow failure associated with it. I am surprised that there is only 10% marrow involvement. With that degree of anemia and neutropenia, I would have expected more. This could mean that there was a sampling error (myeloma is a patchy disease - the biopsy may have sampled a less heavily affected area), there is a co-existing condition affecting your bone marrow function, or your myeloma has altered the bone marrow environment to the point that you are not making neutrophils and red cells appropriately (regardless of disease burden).
I would ensure that alternative causes of anemia and low neutrophil counts have been sought, although I bet your physicians did this a long time ago. I suspect you are being followed at an institution with a good deal of experience in myeloma based on your description of your case, but it never hurts to consider a fresh look at the situation if you are uncomfortable with where things stand. As far as when to re-treat you and with what agent(s), that is probably beyond the scope of this forum given the complexities of your case. You note that you have not received Revlimid previously, so a regimen incorporating this drug would be one logical option once it is decided you need therapy.
The good news is that you have been spared bone and kidney-related complications of myeloma and your disease has not progressed significantly despite having only received one cycle of therapy and being off therapy for a very extended period of time! Let's hope things stay that way. Good luck and take care!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: No response to treatment and transplant-ineligible
Dr. Voorhees.
Thank you for your input into my unique situation. Although it may not be of general interest to multiple myeloma patients, I did want to respond to one of your inquiries and ask you a specific question. I have had more bone marrow biopsies than I wish to count. With but one exception, the % plasma has always been less than 10 and in some cases as low as 5. And you are correct we have tried every test to determine if a non multiple myeloma source was responsible for my bone marrow malfunctions...no luck.
Revlimid is indeed an option as is our all time favorite poison melphalan.
I did exchange e-mails with Dr. Wood at your institution about stem cell harvest with the Etoposide/G-CSF combo. He seems surprised that I could not collect. In light of the additional insights I have shared with you about my case can you share some recommendation on stem-cell harvesting. Should I forget about it? UNC appears to be a focal point for this type of research.
Thank you.
Gary
Thank you for your input into my unique situation. Although it may not be of general interest to multiple myeloma patients, I did want to respond to one of your inquiries and ask you a specific question. I have had more bone marrow biopsies than I wish to count. With but one exception, the % plasma has always been less than 10 and in some cases as low as 5. And you are correct we have tried every test to determine if a non multiple myeloma source was responsible for my bone marrow malfunctions...no luck.
Revlimid is indeed an option as is our all time favorite poison melphalan.
I did exchange e-mails with Dr. Wood at your institution about stem cell harvest with the Etoposide/G-CSF combo. He seems surprised that I could not collect. In light of the additional insights I have shared with you about my case can you share some recommendation on stem-cell harvesting. Should I forget about it? UNC appears to be a focal point for this type of research.
Thank you.
Gary
Re: No response to treatment and transplant-ineligible
Dear Gary,
It would seem that you and your doctors have done everything possible to coax those stem cells out into the blood stream. I do not think that I have any good answers for you in that regard. I would probably not consider autologous stem cell transplant as a good option under the circumstances. In cases such as yours, we might even consider an allogeneic stem cell transplant, but that would be quite risky at your age and with this level of persistent disease. Again, a fresh look at a case as complex as yours is always a highly reasonable thing to do.
Good luck!
Pete V.
It would seem that you and your doctors have done everything possible to coax those stem cells out into the blood stream. I do not think that I have any good answers for you in that regard. I would probably not consider autologous stem cell transplant as a good option under the circumstances. In cases such as yours, we might even consider an allogeneic stem cell transplant, but that would be quite risky at your age and with this level of persistent disease. Again, a fresh look at a case as complex as yours is always a highly reasonable thing to do.
Good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: No response to treatment and transplant-ineligible
Dr. Voorhees:
You have provided a fresh without being saddled with all the details. If the folks at UAMS cannot come up with something I may give Mayo another try.
You have provided a fresh without being saddled with all the details. If the folks at UAMS cannot come up with something I may give Mayo another try.
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