My husband is starting to relapse 5 1/2 years after an autologous stem cell transplant. He has not been on any maintenance drugs during this time and it's been great! He actually didn't have a great response to the transplant, but our doctors decided to just wait and see what his body did, and to all of our amazement, he did really well and remained stable for 5 years.
Our oncologist has suggested starting on Darzalex along with Revlimid and dexamethasone. My question is, how long are people on this regimen? Are people sometimes put on this regimen, then then taken off of it after their disease has stabilized?
Thanks in advance for your help!
Sandy
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SandyC63 - Name: SandyC
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: 2012
- Age at diagnosis: 51
Re: Duration of treatment with Darzalex?
Hello Sandy!
That is great that your husband was able to achieve a 5 1/2 year partial response after an autologous stem cell transplant and did not need to take any myeloma treatments during that time.
In answer to your question, I am not sure that anyone yet knows how long patients would take Darzalex, since it is a relatively new drug. I have not taken it, but from what I have learned, it is given firstly by a long infusion, and there may be an allergic reaction, so pre-medications are given to help with that. It would be given weekly for 2 months, and then after that, every other week until four months. After four months, it would be given monthly. There are studies going on now to see if Darzalex could be given subcutaneously , instead of by infusions, as is the case with Velcade (bortezomib).
Good luck with everything!
That is great that your husband was able to achieve a 5 1/2 year partial response after an autologous stem cell transplant and did not need to take any myeloma treatments during that time.
In answer to your question, I am not sure that anyone yet knows how long patients would take Darzalex, since it is a relatively new drug. I have not taken it, but from what I have learned, it is given firstly by a long infusion, and there may be an allergic reaction, so pre-medications are given to help with that. It would be given weekly for 2 months, and then after that, every other week until four months. After four months, it would be given monthly. There are studies going on now to see if Darzalex could be given subcutaneously , instead of by infusions, as is the case with Velcade (bortezomib).
Good luck with everything!
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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: Duration of treatment with Darzalex?
I would imagine that the combination recommended for your spouse will continue until it is no longer effective. Whether or not your spouse takes a medication “holiday” will be up to you and the treating physician.
My spouse is currently on the Darzalex (daratumumab), Pomalyst (pomalidomide, Imnovid), and dexamethasone treatment. The treating physician and myeloma specialist both agree that this combination will continue unless there is evidence of myeloma activity.
My spouse has monthly labs, including CBC (complete blood count), CMP (comprehensive metabolic panel), SPE (serum protein electrophoresis) and FLC (kappa/lambda quantitative free light chains) to monitor myeloma activity.
After an autologous stem cell transplant, my spouse was on Revlimid (lenalidomide) maintenance; once the Revlimid was no longer effective, the three drug combination (cocktail) was recommended. There are many treatment options available with the Darzalex. Darzalex, Velcade, and dexamethasone, for example, also is commong. However, in my spouse’s situation, initial multiple myeloma treatment included Velcade, which caused severe neuropathy; hence, Velcade was not considered in the current cocktail of drugs.
Best,
Zelda
My spouse is currently on the Darzalex (daratumumab), Pomalyst (pomalidomide, Imnovid), and dexamethasone treatment. The treating physician and myeloma specialist both agree that this combination will continue unless there is evidence of myeloma activity.
My spouse has monthly labs, including CBC (complete blood count), CMP (comprehensive metabolic panel), SPE (serum protein electrophoresis) and FLC (kappa/lambda quantitative free light chains) to monitor myeloma activity.
After an autologous stem cell transplant, my spouse was on Revlimid (lenalidomide) maintenance; once the Revlimid was no longer effective, the three drug combination (cocktail) was recommended. There are many treatment options available with the Darzalex. Darzalex, Velcade, and dexamethasone, for example, also is commong. However, in my spouse’s situation, initial multiple myeloma treatment included Velcade, which caused severe neuropathy; hence, Velcade was not considered in the current cocktail of drugs.
Best,
Zelda
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ZippyZelda - Name: ZippyZelda
- Who do you know with myeloma?: Spouse
Re: Duration of treatment with Darzalex?
Hi Nancy,
Thanks so much for your reply and your encouragement! They are very much appreciated. Thanks also for the detail related to the current Darzalex treatment. We’ll meet with our doctor on Tuesday to learn more about when and how we’ll start.
Many thanks in advance,
Sandy
Thanks so much for your reply and your encouragement! They are very much appreciated. Thanks also for the detail related to the current Darzalex treatment. We’ll meet with our doctor on Tuesday to learn more about when and how we’ll start.
Many thanks in advance,
Sandy
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SandyC63 - Name: SandyC
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: 2012
- Age at diagnosis: 51
Re: Duration of treatment with Darzalex?
Sandy,
I have been on Darzalex for about 18 months, and it has worked extremely well for me (in combination with Pomalyst and dex) with very few, if any, side effects. My neutrophils drop every month, but I suspect that's due to the Pomalyst. You will hear about the first infusion being difficult and long, and it is and can be, but the nurses watch you very closely and I wish I hadn't worried about it so much beforehand, because in my case and many others, it wasn't really that bad. And since then, no problems with the infusions.
They start you at once a week infusions, then you drop to twice a month (for maybe 4 months), then once a month. I suppose it may be different for others, but I am on Darzalex indefinitely as maintenance. Which is completely fine with me. Once a month infusion isn't bad, and being in remission with no side effects is amazing and beyond my wildest dreams.
I hope your husband has a good response to it as well.
Best of luck and good health to you both, Courtenay
I have been on Darzalex for about 18 months, and it has worked extremely well for me (in combination with Pomalyst and dex) with very few, if any, side effects. My neutrophils drop every month, but I suspect that's due to the Pomalyst. You will hear about the first infusion being difficult and long, and it is and can be, but the nurses watch you very closely and I wish I hadn't worried about it so much beforehand, because in my case and many others, it wasn't really that bad. And since then, no problems with the infusions.
They start you at once a week infusions, then you drop to twice a month (for maybe 4 months), then once a month. I suppose it may be different for others, but I am on Darzalex indefinitely as maintenance. Which is completely fine with me. Once a month infusion isn't bad, and being in remission with no side effects is amazing and beyond my wildest dreams.
I hope your husband has a good response to it as well.
Best of luck and good health to you both, Courtenay
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