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dpcaregiver Member
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Hi, My husband is having difficulty mobilizing his stem cells for collection. We are at Day +16 and it doesn't look like he'll be able to collect today either. He has had 2 neulasta shots and is getting nupagen twice daily since Day +13. They mentioned today a new drug that was just approved by the FDA in January that has been used in research for some time that apparently works well. What is that drug (I forgot the name) and what are the side affects. Have you ever known of anyone NOT being able to do the transplant because they couldn't get enough stem cells collected. Probably just being overly worried, but would like to know our options. denese |
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Annick Member
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Hi Denese, One of these days soon I will need to meet you now that we've had several chat room correspondences!  The drug that you are referring to was known as AMD3100 when it was in clinical trials, but it was approved by the FDA under the name Mozobil. I am not the coordinator for the compassionate use AMD3100 trial, but the ideal situation would be for you to still be able to get this drug as part of that trial since the drug is supplied free-of-charge. I know the trial is still open, but I'm not sure whether it's just open to already enrolled patients in follow-up or whether they are still allowing new enrollees. I will find out for you. AMD3100/Mozobil is, for most patients, really easy to tolerate. The most common side effects are GI-related and include some nausea, cramping, and diarrhea. Occasionally, some patients experience some vomiting, but this can be easily controlled with the appropriate supportive care medications. Truly, this is not a drug in which side effects play a significant factor. Most patients who have not collected stem cells by other means end up collecting well with the aid of this drug, and I expect that your husband will be among this group. It happens occasionally that we have a patient that does not collect well even with the AMD3100, but most of these patients have been heavily pre-treated and have incurred injury to the bone marrow from those treatments, thus making it hard to collect stem cells. I hope that helps. I'll send you a copy of the research consent form so that you will have more in-depth information about side effects and the treatment schema for this drug. As always, if you have any questions/concerns, please feel free to contact us! That's what we're here for. |
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dpcaregiver Member
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Thanks Annick, yes we do need to 'meet' We are at Huntsman everyday, so I'll find out how to find you and check in. Hopefully, Kim will start collecting tomorrow. His CD 34 came back at 3.7 so, the good news today is he's still moving up in that direction. Since Kim was just diagnosed in October of 2008 he's not had much treatment--4 times Velcade and two series of Dexamethasone so, hopefully once he gives up those darned cells they'll move fast. Thank you again, for your fast reply. We had a call from a friend of a friend of afriend (one of those kind of calls) the other day from a lady in TX with Myeloma. She has had one stem cell transplant and has now been turned back over to her regular doctor and sounds like they aren't going to do maintenance treatment and for sure another transplant is not in the works. By the time she questioned us about Huntsman's protocol, she was feeling like she needed to do more research and wants to find out why HER treatment didn't include a 2nd transplant and maintenance. We feel so very fortunate to be at Huntsman and being under their excellent care. We believe in the process we are going thru and it really helps to be able to ask questions here and have them answered so fast. |
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Annick Member
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Denese, If it helps, please feel free to pass along my e-mail address and phone number to the friend of a friend of a friend , and I'll be happy to answer any questions that they might have. If she can get a sense of why Huntsman uses the treatment schema that we use, and what data we have to back it up, she'll be able to make a more fully informed decision about whether to stay the current course or consider a 2nd transplant and maintenance therapy. |
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dpcaregiver Member
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Annick I've already given it to her. Be interesting to see what happens. |
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