Hi!
My husband has had 5 cycles of Darzalex (daratumumab). Kappa numbers went up. What's next for him? Are there any treatments left?
His oncologist didn't seem hopeful, according to my husband. He has been fighting this disease for 13 years. Had 1 stem cell transplant.
Thank you all.
Jojo
Forums
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Jojo - Name: Jojo
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2003
- Age at diagnosis: 51
Re: Darzalex (daratumumab) not working - what next?
Hello Jojo,
What treatment regimens (not just drugs, but regimens, like "Velcade and dexamethasone", or "Revlimid, Velcade, and dexamethasone") has your husband had so far, how long did he have each regimen, and how did he respond to each of the regimens?
I realise your husband probably has had most approved treatments for multiple myeloma, but it's worth making sure that's the case before we start recommending esoteric therapies that are only available in clinical trials.
Having said that, a clinical trial is probably going to be something your husband will be considering. So you should start learning how to use the https://clinicaltrials.gov website if you haven't already. Use the advanced search function, which allows you to type in the condition ("myeloma" or "relapsed myeloma") and specify things like country or state / province.
Just as an example, this link at clinicaltrials.gov will show you the results of all trials for relapsed myeloma patients which are testing a treatment, are open and recruiting patients, and are located in the United States (which is where I'm assuming you are located).
Cheers!
What treatment regimens (not just drugs, but regimens, like "Velcade and dexamethasone", or "Revlimid, Velcade, and dexamethasone") has your husband had so far, how long did he have each regimen, and how did he respond to each of the regimens?
I realise your husband probably has had most approved treatments for multiple myeloma, but it's worth making sure that's the case before we start recommending esoteric therapies that are only available in clinical trials.
Having said that, a clinical trial is probably going to be something your husband will be considering. So you should start learning how to use the https://clinicaltrials.gov website if you haven't already. Use the advanced search function, which allows you to type in the condition ("myeloma" or "relapsed myeloma") and specify things like country or state / province.
Just as an example, this link at clinicaltrials.gov will show you the results of all trials for relapsed myeloma patients which are testing a treatment, are open and recruiting patients, and are located in the United States (which is where I'm assuming you are located).
Cheers!
Re: Darzalex (daratumumab) not working - what next?
Hello Jojo:
As Ian mentioned, you did not mention the prior lines of treatment. It may be that your husband has become refractory to the standard therapies. A couple of suggestions, I think it would all be on clinical trials, and may not be close to you geographically, but hopefully a couple may be: selinexor, venetoclax, pembrolozimab, atelozizumab, Car T cell clinical trials. Good luck to you.
As Ian mentioned, you did not mention the prior lines of treatment. It may be that your husband has become refractory to the standard therapies. A couple of suggestions, I think it would all be on clinical trials, and may not be close to you geographically, but hopefully a couple may be: selinexor, venetoclax, pembrolozimab, atelozizumab, Car T cell clinical trials. Good luck to you.
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JPC - Name: JPC
Re: Darzalex (daratumumab) not working - what next?
Darzalex stopped working for my husband this summer. He is now on his 3rd week of a trial drug called venetoclax. It is a drug that was approved this year for leukemia. It is now in various trials for multiple myeloma. It's too early for us to have any labs back to know if it is yet working in him. He is participating in this trial through Mayo.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Darzalex (daratumumab) not working - what next?
As rumnting already has suggested, some of the drugs mentioned so far in this thread have been approved for diseases other than multiple myeloma. So it may be possible to have them prescribed for myeloma off label. The question will be whether insurance will cover the off label use.
Here are the generic names and brand names of the drugs:
selinexor - not yet approved by the FDA for anything; only available via clinical trials
Venclexta (venetoclax) - FDA approved
Keytruda (pembrolizumab) - FDA approved
Tecentriq (atezolizumab) - FDA approved
Here are the generic names and brand names of the drugs:
selinexor - not yet approved by the FDA for anything; only available via clinical trials
Venclexta (venetoclax) - FDA approved
Keytruda (pembrolizumab) - FDA approved
Tecentriq (atezolizumab) - FDA approved
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JimNY
Re: Darzalex (daratumumab) not working - what next?
Has he tried Empliciti (elotuzumab)? It's another monoclonal antibody that was FDA approved for multiple myeloma late last year.
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Janet1520
Re: Darzalex (daratumumab) not working - what next?
Hi Jojo,
I am also on Darzalex (daratumumab). I am on my 10th treatment. Not sure how it's doing, yet my m-spike is down a little.
Maybe, Jojo, you should post what your husband has taken so far, and some of the real smart people on this board can recommend other drugs, Also, maybe you could ask your doctor about a drug I was on that worked for me for 16 month just before i went on Darzalex. The name of it is Farydak (panobinostat). Maybe your husband can try it. There were no side effects. It is in pill form,
Best of luck to you your husband and all myeloma patients and all cancer suffers. I hope a cure is near.
Joe
I am also on Darzalex (daratumumab). I am on my 10th treatment. Not sure how it's doing, yet my m-spike is down a little.
Maybe, Jojo, you should post what your husband has taken so far, and some of the real smart people on this board can recommend other drugs, Also, maybe you could ask your doctor about a drug I was on that worked for me for 16 month just before i went on Darzalex. The name of it is Farydak (panobinostat). Maybe your husband can try it. There were no side effects. It is in pill form,
Best of luck to you your husband and all myeloma patients and all cancer suffers. I hope a cure is near.
Joe
Re: Darzalex (daratumumab) not working - what next?
My mom is 58 and is supposedly standard risk. She has been through Revlimid, Velcade, Pomalyst, Kyprolis, and now Darzalex. She has never had any kind of transplant. Her kappa light chains are at 36, so they have just recently started going up with Darzalex.
My mom has never had any kind of transplant, and she doesn't really want to go through one but said if she was going to die anyways, she might try one. She is pretty healthy otherwise besides myeloma.
Any suggestions? We meet with her specialist tomorrow. I am just a nervous wreck hoping that there are more options.
My mom has never had any kind of transplant, and she doesn't really want to go through one but said if she was going to die anyways, she might try one. She is pretty healthy otherwise besides myeloma.
Any suggestions? We meet with her specialist tomorrow. I am just a nervous wreck hoping that there are more options.
Re: Darzalex (daratumumab) not working - what next?
Hi Jessica,
There are still options for your mother. A couple more experimental options have already been mentioned in earlier posts in this thread. In addition, there is a whole class of drugs – alkylators – which your mother has not yet been treated with. They include melphalan, the drug that is given as a high dose in the stem cell transplant process, but also cyclophosphamide and Treanda (bendamustine).
There is also Ninlaro (ixazomib), which is in the same class of drugs as Velcade and Kyprolis (proteasome inhibitors).
Your mother's doctor may indeed suggest that she consider a transplant, preceded by some sort of multidrug bridging therapy, such as the "PACE" regimen.
I haven't listed all the options, but just wanted to give you the sense that there are still options.
There are still options for your mother. A couple more experimental options have already been mentioned in earlier posts in this thread. In addition, there is a whole class of drugs – alkylators – which your mother has not yet been treated with. They include melphalan, the drug that is given as a high dose in the stem cell transplant process, but also cyclophosphamide and Treanda (bendamustine).
There is also Ninlaro (ixazomib), which is in the same class of drugs as Velcade and Kyprolis (proteasome inhibitors).
Your mother's doctor may indeed suggest that she consider a transplant, preceded by some sort of multidrug bridging therapy, such as the "PACE" regimen.
I haven't listed all the options, but just wanted to give you the sense that there are still options.
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Jonah
Re: Darzalex (daratumumab) not working - what next?
Hi all,
I am on my 10th infusion of Darzalex. My M-spike went from zero point two three (0.23 g/dl) up 0.02 to (0.25 g/dl). No side effects from this drug. I was hoping for a zero M-spike. I'm also interested what options I might have if the Darzalex fails.
Joe
I am on my 10th infusion of Darzalex. My M-spike went from zero point two three (0.23 g/dl) up 0.02 to (0.25 g/dl). No side effects from this drug. I was hoping for a zero M-spike. I'm also interested what options I might have if the Darzalex fails.
Joe
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