Hi,
Has anyone been on one of the new monoclonal antibodies for myeloma - daratumumab, SAR650984, elotuzumab?
What were your experiences? Was it effective? Did you also take another medication like Revlimid or Velcade? Did you have to take dex?
These new drugs seem to be mostly in trials for people refractory to all the other meds. Was that your experience? How well are these drugs tolerated?
Any information would be greatly appreciated.
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Re: Anyone had one of the monoclonal antibodies?
Hi Jade,
You might get more responses to your question if you gave a little context as to why you are asking. Are you a myeloma patient, or do you have a family member who has myeloma? If you're a patient or family member of a patient, when were they diagnosed, and what sort of treatment have they received?
I ask because I don't think I've seen you post here in the forum before. And, while others here may feel differently, I tend to think of this forum as mainly designed to support patients and their families. So I am more willing to provide help or feedback to someone if I know that they are a patient or family member.
You might get more responses to your question if you gave a little context as to why you are asking. Are you a myeloma patient, or do you have a family member who has myeloma? If you're a patient or family member of a patient, when were they diagnosed, and what sort of treatment have they received?
I ask because I don't think I've seen you post here in the forum before. And, while others here may feel differently, I tend to think of this forum as mainly designed to support patients and their families. So I am more willing to provide help or feedback to someone if I know that they are a patient or family member.
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Jonah
Re: Anyone had one of the monoclonal antibodies?
It may be somewhat presumptuous on my part, but I would say that patients on any of those medications may not be up to spending time in front of the computer and posting on a web forum (Dr. Goodman, rest in peace, being the exception). We are talking about patients with multiple prior relapses that are enrolled in a trial and potentially fighting for their life.
Also, I do not know how the enrollment process for a trial works, but I would imagine that there may be some confidentiality agreement.
Lastly, it is hard to develop an accurate and objective view of the overall quality of the medication by relying on a few isolated patients.
That said, I posed a somewhat similar question a while ago regarding elotuzumab. I could not resist my curiosity as a patient. However, I did not receive any replies. Good luck.
Also, I do not know how the enrollment process for a trial works, but I would imagine that there may be some confidentiality agreement.
Lastly, it is hard to develop an accurate and objective view of the overall quality of the medication by relying on a few isolated patients.
That said, I posed a somewhat similar question a while ago regarding elotuzumab. I could not resist my curiosity as a patient. However, I did not receive any replies. Good luck.
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Anyone had one of the monoclonal antibodies?
Hi Jade,
I'd be interested in your question too. I have a friend who will be starting a trial of one of the new antibodies in a few weeks. He couldn't remember the name though. He's concerned about not qualifying for the trial.
He's not an internet person -- he didn't know which one he might be getting -- and I'm not sure if he'll be adding anything to the mix.
I'd be interested in your question too. I have a friend who will be starting a trial of one of the new antibodies in a few weeks. He couldn't remember the name though. He's concerned about not qualifying for the trial.
He's not an internet person -- he didn't know which one he might be getting -- and I'm not sure if he'll be adding anything to the mix.
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stann
Re: Anyone had one of the monoclonal antibodies?
Thanks for your responses. I am the wife of a myeloma patient (8 years) who has been in constant treatment, including all the approved therapies as well as 3 major surgeries, 4 courses of radiation, many broken bones, and an auto stem cell transplant.
It is true that often people who are that sick don't have the energy to research the next treatment option and rely on family to help them. We are trying to decide between a trial , which would entail some travel, or going back on a cytotoxic medication to wait until one of these new drugs is approved.
Any input is appreciated.
It is true that often people who are that sick don't have the energy to research the next treatment option and rely on family to help them. We are trying to decide between a trial , which would entail some travel, or going back on a cytotoxic medication to wait until one of these new drugs is approved.
Any input is appreciated.
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Jade
Re: Anyone had one of the monoclonal antibodies?
Jade: You might want to consider changing your board preferences to allow receipt of private messages. That way, others can see that you have posted before (and see those earlier posts you already made) and/or send you messages on the topic.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Anyone had one of the monoclonal antibodies?
Jade,
As somebody who comes to this forum for a day or two, then disappears for a few months, I do not understand why you weren't welcomed with open arms.
Welcome to the forum. You can ask whatever you like. Something must have happened here earlier that made some others paranoid about new posters, but I must have missed it.
Welcome and good luck. This forum is a great place to find information.
Stann
As somebody who comes to this forum for a day or two, then disappears for a few months, I do not understand why you weren't welcomed with open arms.
Welcome to the forum. You can ask whatever you like. Something must have happened here earlier that made some others paranoid about new posters, but I must have missed it.
Welcome and good luck. This forum is a great place to find information.
Stann
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stann
7 posts
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