My husband's myeloma specialist has just told us that the next best treatment option for him would be if we could find a trial using daratumumab or elotuzumab. We were just told this and have not yet begun the research.
Does anyone here know where any of these trials are taking place, or have any of you received these meds?
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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: Trials or experience with daratumumab or elotuzumab?
Penn in Philadelphia has a trial with daratumumab and Pomalyst [pomalidomide]. At the time my daughter was put on a different trial. The daratumumab trial did not have any openings, but I know one person has dropped out. Don't know the status of the trial now.
Re: Trials or experience with daratumumab or elotuzumab?
Hi Rumnting,
If you go into the 'clinicaltrials.gov' site, there are thousands of clinical trials listed. You can type 'daratumumab - open trials' into the search area to find trials that way. There are some trials that are ongoing but are 'closed', i.e. they are no longer recruiting patients, so you need to look at trials that are still taking on patients. I did see one daratumumab trial that combines lenalidomide (Revlimid) plus 'dex' with it, and there are probably more trials.
I think, though, that it would be best to consult with your myeloma specialist for advice on trials. They will know what trials are available at their institutions, or could guide you to trials.
Good luck, and I hope that the monoclonal antibody works really well for your husband, if he can find a trial for either daratumumab or elotuzumab.
If you go into the 'clinicaltrials.gov' site, there are thousands of clinical trials listed. You can type 'daratumumab - open trials' into the search area to find trials that way. There are some trials that are ongoing but are 'closed', i.e. they are no longer recruiting patients, so you need to look at trials that are still taking on patients. I did see one daratumumab trial that combines lenalidomide (Revlimid) plus 'dex' with it, and there are probably more trials.
I think, though, that it would be best to consult with your myeloma specialist for advice on trials. They will know what trials are available at their institutions, or could guide you to trials.
Good luck, and I hope that the monoclonal antibody works really well for your husband, if he can find a trial for either daratumumab or elotuzumab.
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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: Trials or experience with daratumumab or elotuzumab?
As Nancy mentioned, clinicaltrials.gov is where you want to go for searches. Use the advanced search function to specify you want trials that are open, for myeloma (condition), and involving daratumumab (intervention) (or elotuzumab, as the case may be.
Also on the advanced search page, you can restrict the search to a specific country and/or specific state.
Here, for example, is a link to all open daratumumab trials for myeloma in the US.
And here's a link to all open elotuzumab trials for myeloma in the US.
I hope your husband finds a trial that's a good fit for his needs.
Also on the advanced search page, you can restrict the search to a specific country and/or specific state.
Here, for example, is a link to all open daratumumab trials for myeloma in the US.
And here's a link to all open elotuzumab trials for myeloma in the US.
I hope your husband finds a trial that's a good fit for his needs.
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Jonah
Re: Trials or experience with daratumumab or elotuzumab?
My husband is in an elotuzumab trial in Los Angeles, CA under the care of Dr. Berenson. The trial is studying the safety of giving elo over the course of 60 minutes (as opposed to 3 hours which is where they started at originally). The elo is combined with Revlimid and dex.
As was already mentioned, you can find this trial and see the inclusion and exclusion criteria on the clinical trials website. You can also call Dr. Berenson's office directly as they have good working knowledge of many trials.
My husband has been in this trial for 11 months and is doing well as are several other patients in the trial.
As was already mentioned, you can find this trial and see the inclusion and exclusion criteria on the clinical trials website. You can also call Dr. Berenson's office directly as they have good working knowledge of many trials.
My husband has been in this trial for 11 months and is doing well as are several other patients in the trial.
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Jean Ruth Howard - Name: Jeannie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 47
Re: Trials or experience with daratumumab or elotuzumab?
Thanks to all that have responded. Here's what I've learned of the various trials ...
They all seem to be trials that involve the daratumumab or elotuzumab being combined with Revlimid or Velcade. Since his disease progressed while on Revlimid and Velcade, he is not eligible for the trials. So far I have not been able to find a trial that is only dara or elo, or one of those combined with dex.
It's a catch-22. He needs a new med because he's failed the old meds, but can't be in one of the trials because he's failed the old meds.
They all seem to be trials that involve the daratumumab or elotuzumab being combined with Revlimid or Velcade. Since his disease progressed while on Revlimid and Velcade, he is not eligible for the trials. So far I have not been able to find a trial that is only dara or elo, or one of those combined with dex.
It's a catch-22. He needs a new med because he's failed the old meds, but can't be in one of the trials because he's failed the old meds.
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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: Trials or experience with daratumumab or elotuzumab?
Hi rumnting,
You've gotten some good pointers so far, and I'll let others comment on some of the issues that you've raised in your latest posting.
I think it's worth bringing up, however, that another agent you and your husband might want to consider is filanesib (ARRY-520), which is being developed by one of the Beacon's sponsors, Array Biopharma. There are a couple of Phase 2 trials of it ongoing in relapsed myeloma patients in the U.S.. You can find a list of them at clinicaltrials.gov, and Array also has a website with additional information about trials of the drug in myeloma.
I suggest filanesib because it hasn't been mentioned yet and it seems like an option that would be relevant for your husband. I'm not just mentioning it because Array is one of the Beacon's sponsors.
There is a long list of potential new myeloma therapies being tested in clinical trials at the top of the Myeloma Beacon's News page. Clicking on any of the drug names will take you to Beacon articles with information about the drug.
Good luck!
You've gotten some good pointers so far, and I'll let others comment on some of the issues that you've raised in your latest posting.
I think it's worth bringing up, however, that another agent you and your husband might want to consider is filanesib (ARRY-520), which is being developed by one of the Beacon's sponsors, Array Biopharma. There are a couple of Phase 2 trials of it ongoing in relapsed myeloma patients in the U.S.. You can find a list of them at clinicaltrials.gov, and Array also has a website with additional information about trials of the drug in myeloma.
I suggest filanesib because it hasn't been mentioned yet and it seems like an option that would be relevant for your husband. I'm not just mentioning it because Array is one of the Beacon's sponsors.
There is a long list of potential new myeloma therapies being tested in clinical trials at the top of the Myeloma Beacon's News page. Clicking on any of the drug names will take you to Beacon articles with information about the drug.
Good luck!
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Trials or experience with daratumumab or elotuzumab?
Hi Rumnting, When I looked at the 'open trials' in the US that Jonah posted, I could see that with the Daratumumab trials, #4, there seemed to be an option to combine it with Pomalyst; and also with #4 for the Elotuzumab trials, there was a combination with other monoclonal antibodies, such as Lililatumab (sp). Hope that helps! Good luck also!
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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: Trials or experience with daratumumab or elotuzumab?
I forgot to mention that he is now on Pomalyst and Kyprolis and seems to be growing resistant to them, so trials that include them are also not an option. His doctor (Mayo) is "not a fan of" panobinostat.
His first recommendation for the next line of treatment is either a dara or elo trial. If that is not possible, then to treat with bendamustine / Revlimid / prednisone. Another option is another auto transplant, but Mayo doc is then not sure what to use as maintenance (he is still thinking that option over).
I will do some research into the filanesib. Thanks, all!
His first recommendation for the next line of treatment is either a dara or elo trial. If that is not possible, then to treat with bendamustine / Revlimid / prednisone. Another option is another auto transplant, but Mayo doc is then not sure what to use as maintenance (he is still thinking that option over).
I will do some research into the filanesib. Thanks, all!
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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: Trials or experience with daratumumab or elotuzumab?
I did a quick search and did not see this mentioned. Early access to daratumumab:
https://clinicaltrials.gov/ct2/show/NCT02477891?term=NCT02477891&rank=1
Best! BN
https://clinicaltrials.gov/ct2/show/NCT02477891?term=NCT02477891&rank=1
Best! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
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