My mother has become refractory to bortezomib (Velcade), Revlimid, and dexamethasone as her kappa light chains kept on increasing even while on the regimen. The doctor put her on Kyprolis, Revlimid, and dexamethasone (KRD), but her kappa value decreased after one cycle and then showed an increase in the second cycle. The doctor now wants to put her on the CyBorD regimen (cyclophosphamide, bortezomib, and dexamethasone).
How likely is it that the CyBorD will have an effect given that my mother's disease no longer responds to either VRD or KRD?
Ruchi
Forums
Re: CyBorD when no longer responding to VRD or KRD?
Hi Ruchi,
I am sorry to hear that your mother is relapsing from the VRD, and also the KRD. I am not a doctor, and can't second guess your doctor, but I see that the cyclophosphamide is another type of treatment, i.e. an alkylating agent. The drugs on the other two programs were immunomodulatory agents (Revlimid), proteasome inhibitors (bortezomib, carfilzomib [Kyprolis]), and the steroid, dexamethasone. So perhaps your doctor wants to try an alkylating agent. Another drug in that category is melphalan. I have taken both of the alkylating agents as part of the stem cell transplant process.
Another drug in the IMID's is thalidomide, and I know that is available in India too. It was the drug from which Revlimid was derived. Other completely different treatments now include monoclonal antibodies, such as daratumumab (Darzalex).
So am wishing you the best and I see from your posts that your mother was first diagnosed in 2011, and has tried various treatments. Good luck!
I am sorry to hear that your mother is relapsing from the VRD, and also the KRD. I am not a doctor, and can't second guess your doctor, but I see that the cyclophosphamide is another type of treatment, i.e. an alkylating agent. The drugs on the other two programs were immunomodulatory agents (Revlimid), proteasome inhibitors (bortezomib, carfilzomib [Kyprolis]), and the steroid, dexamethasone. So perhaps your doctor wants to try an alkylating agent. Another drug in that category is melphalan. I have taken both of the alkylating agents as part of the stem cell transplant process.
Another drug in the IMID's is thalidomide, and I know that is available in India too. It was the drug from which Revlimid was derived. Other completely different treatments now include monoclonal antibodies, such as daratumumab (Darzalex).
So am wishing you the best and I see from your posts that your mother was first diagnosed in 2011, and has tried various treatments. Good luck!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: CyBorD when no longer responding to VRD or KRD?
Hi Nancy,
Thank you so much for your reply. So it seems there are chances that cyclophosphamide might work as it is a different type of treatment.
In my mother's case, thalidomide was first given when she was diagnosed in 2011, but it never worked for her, so the doctor put her on Revlimid. Up until last year she had a good response with bortezomib, but it eventually stopped working. Somewhere during last year she was also given pomalidomide (Pomalyst, Imnovid) with bortezomib and dexamethasone, but it didnt seem to work either
The doctor also suggested vincristine, doxorubicin, and dexamethasone (VAD) but we thought against it for now due to its high toxic effects. We can try it later when nothing works.
My mother does not want to go for a transplant, so not sure what other treatment options will be available for us in future, so I am extremely worried. There are comparatively limited options in India, and Darzalex is very expensive as of now. Moreover, her oncologist does not have any experience with it, so I am a bit concerned looking at the first infusion reactions it might cause.
Ruchi
Thank you so much for your reply. So it seems there are chances that cyclophosphamide might work as it is a different type of treatment.
In my mother's case, thalidomide was first given when she was diagnosed in 2011, but it never worked for her, so the doctor put her on Revlimid. Up until last year she had a good response with bortezomib, but it eventually stopped working. Somewhere during last year she was also given pomalidomide (Pomalyst, Imnovid) with bortezomib and dexamethasone, but it didnt seem to work either
The doctor also suggested vincristine, doxorubicin, and dexamethasone (VAD) but we thought against it for now due to its high toxic effects. We can try it later when nothing works.
My mother does not want to go for a transplant, so not sure what other treatment options will be available for us in future, so I am extremely worried. There are comparatively limited options in India, and Darzalex is very expensive as of now. Moreover, her oncologist does not have any experience with it, so I am a bit concerned looking at the first infusion reactions it might cause.
Ruchi
Re: CyBorD when no longer responding to VRD or KRD?
Namaste, Ruchi! I am wishing you the best in these treatments. I knew about the thalidomide since when it was suggested that I take a 'maintenance' treatment after my stem cell transplant in 2010, that was the drug used. I didn't use it though since Revlimid was funded during that time period and I used that for a while instead. From my in-laws in India I learned that thalidomide is available there too.
I hope that you can find some treatments that help your mother. You are a good daughter to look after her so well! It also sounds like your doctor is really knowledgeable about what is available to you.
I hope that you can find some treatments that help your mother. You are a good daughter to look after her so well! It also sounds like your doctor is really knowledgeable about what is available to you.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: CyBorD when no longer responding to VRD or KRD?
Namaste, Nancy! Thank you so much for your kind words. I really wish CyBorD works for her. She will be on it for 3 weeks on and one week off. I will update this thread with the results of her response to this therapy after first cycle.
Actually, initially my parents were alone in India, but since last 2 years my brother who was also in U.S. moved back to be with them. For me it's very difficult staying away from them when they are going through this. The least I can do is do my research and try to make sure she has the right treatment out of all the available options. This website has been extremely helpful and I rely a lot on it to get information.
Ruchi
Actually, initially my parents were alone in India, but since last 2 years my brother who was also in U.S. moved back to be with them. For me it's very difficult staying away from them when they are going through this. The least I can do is do my research and try to make sure she has the right treatment out of all the available options. This website has been extremely helpful and I rely a lot on it to get information.
Ruchi
Re: CyBorD when no longer responding to VRD or KRD?
I had Revlimid, Velcade, and dexamethasone (RVD) as my induction treatment. It lowered my M-spike but not my light chains. So my doctor added cyclophosphamide to the RVD. I took it orally once a week, so it was convenient. I also tolerated it well. It was effective in lowering my light chains. Best wishes to your mom.
Linda
Linda
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LindaM - Name: Linda
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2016
- Age at diagnosis: 59
Re: CyBorD when no longer responding to VRD or KRD?
Thanks Linda. In my mother's case, she never had an M-spike. Her oncologist measured her free light chains (with kappa going out of range) to track her disease. Currently her kappa-lambda ratio is very high. Hope adding cyclophosphamide helps in reducing those numbers.
Re: CyBorD when no longer responding to VRD or KRD?
Update
So mother has been on CyBorD for 4 weeks. She used to have 450 mg of cyclophosphamide, 40 mg of dexamethasone, and 2 mg Velcade at the start of every week. They gave the Velcade injection in stomach and other drugs were given through IV.
She was tested for free light chains and unfortunately her kappa value increased again even after treatment. It increased from 1829 to 2427. Her B2 microglobulin did reduce a little compared to her previous result. I think the cyclophosphamide is also not working. Also, in between treatment, her hemoglobin got very low, around 7.4, so the doctor put her on 40000 erythropoietin injections weekly since 3 weeks. This brought her hemoglobin to 9.7. We were a bit reluctant to use erythropoietin due to some concerns that have been raised about it here on the forum, but the doctor insisted on giving it due to low counts.
Not sure what other treatment options are left. We are meeting with her oncologist soon.
Ruchi
So mother has been on CyBorD for 4 weeks. She used to have 450 mg of cyclophosphamide, 40 mg of dexamethasone, and 2 mg Velcade at the start of every week. They gave the Velcade injection in stomach and other drugs were given through IV.
She was tested for free light chains and unfortunately her kappa value increased again even after treatment. It increased from 1829 to 2427. Her B2 microglobulin did reduce a little compared to her previous result. I think the cyclophosphamide is also not working. Also, in between treatment, her hemoglobin got very low, around 7.4, so the doctor put her on 40000 erythropoietin injections weekly since 3 weeks. This brought her hemoglobin to 9.7. We were a bit reluctant to use erythropoietin due to some concerns that have been raised about it here on the forum, but the doctor insisted on giving it due to low counts.
Not sure what other treatment options are left. We are meeting with her oncologist soon.
Ruchi
Re: CyBorD when no longer responding to VRD or KRD?
My mother's oncologist today decided on starting Kyprolis, bendamustine, and dexamethasone treatment regimen.
The doctor also suggested using pomalidomide, doxorubicin, and dexamethasone regimen, where doxorubicin will be given every 21 days instead of weekly (so he might be thinking of using high- dose). But my mother doesn't want to do that as she doesn't want to lose her hair.
Ruchi
The doctor also suggested using pomalidomide, doxorubicin, and dexamethasone regimen, where doxorubicin will be given every 21 days instead of weekly (so he might be thinking of using high- dose). But my mother doesn't want to do that as she doesn't want to lose her hair.
Ruchi
Re: CyBorD when no longer responding to VRD or KRD?
Namaste Ruchi,
Thanks for the update about your mother. I hope that any new treatments will work better for her. I don't know why she would be worried about the loss of her hair, since as far as I know Pomalyst or Kyprolis would not cause hair loss. But even if there were hair loss, it can be helped by wearing wigs and even getting false eyelashes. I totally lost my hair during the stem cell transplant process, but wore a wig. After a few months, the hair grew back in better than it was before! I think that was because it was all new hair and the same length too. So best wishes to you both.
Thanks for the update about your mother. I hope that any new treatments will work better for her. I don't know why she would be worried about the loss of her hair, since as far as I know Pomalyst or Kyprolis would not cause hair loss. But even if there were hair loss, it can be helped by wearing wigs and even getting false eyelashes. I totally lost my hair during the stem cell transplant process, but wore a wig. After a few months, the hair grew back in better than it was before! I think that was because it was all new hair and the same length too. So best wishes to you both.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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