Good news and bad news. My stem cell production was off the charts and collection went well. Pretty interesting process, I put a video of the machine working on facepage. They collect 100ml of stem cells separated with a centrifuge. Then freeze the until needed later for the transplant. To produce stem cells they put me on double nuepogen shots which suck because they make your bones soft and a lot of bone pain because of it. Only had to do them for a week though.
Spent a lot of time last week getting everything taken care of that they needed to do before doing the high dose chemo followed by stem cell transplant. That all went well other than finding a blood clot by my lung and needing to go back on blood thinners. The plan was to admit me today and start the high dose chemo then do transplant but the PET scan wasn't clean enough so they want to do more chemo first. The cleaner the scan, the higher the success rate of the High Dose followed by HSCT. The ICE chemo made some progress but not enough. Certainly more than the ABVD which did nothing over 6 months worth of treatments. They decided to try a different chemo instead of more ICE.
So I started another new chemo today. This is the third one they are trying. It's really new, and I wish I could've gotten this to begin with. Very mild side effects, don't have to take steroids or emend afterwards and the infusion is only an hour(only 20 for the drug the rest is just pre fluid and flush). Neuropathy is the main concern with it though I guess, but I have a really hard time noticing it due to having raynauds already. Neuropathy is a big concern though because it's irreversible.
Brentuximab is what it's called. It works differently than the chemo I had before, it's kind of a "smart" drug from the sounds of it. Very new, only been approved for two years. The results show over 50% success rate at putting refractory hodgkins into remission.
I think the reason they can't use it right away though probably has a lot to do with insurance. I'm guessing with it being new and only one company making it, that it's extremely expensive. IIRC it's only approved for use in refractory Hodgkins at this time which is Hodgkins that failed to respond to initial treatment like mine did.
I have to do another treatment in three weeks. Then a few weeks after that another PET scan. If I show a good response to this chemo they will go until they get a clean scan then do the high dose followed by HSCT. If they still can't get things cleaned up they may opt to do an Allogeneic stem cell transplant instead of an autologous. Autologous gives me my own stem cells they collected back after the high dose chemo. Allogeneic gives me a matching donors stem cells instead. Allogeneic has a better chance of keeping the cancer away but carries a lot of other risks and hassles. Autologous has few issues but if they can't get things clean before hand the success rate is lower.
I'm still doing fine otherwise though. Thanks for the support.
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Spent a lot of time last week getting everything taken care of that they needed to do before doing the high dose chemo followed by stem cell transplant. That all went well other than finding a blood clot by my lung and needing to go back on blood thinners. The plan was to admit me today and start the high dose chemo then do transplant but the PET scan wasn't clean enough so they want to do more chemo first. The cleaner the scan, the higher the success rate of the High Dose followed by HSCT. The ICE chemo made some progress but not enough. Certainly more than the ABVD which did nothing over 6 months worth of treatments. They decided to try a different chemo instead of more ICE.
So I started another new chemo today. This is the third one they are trying. It's really new, and I wish I could've gotten this to begin with. Very mild side effects, don't have to take steroids or emend afterwards and the infusion is only an hour(only 20 for the drug the rest is just pre fluid and flush). Neuropathy is the main concern with it though I guess, but I have a really hard time noticing it due to having raynauds already. Neuropathy is a big concern though because it's irreversible.
Brentuximab is what it's called. It works differently than the chemo I had before, it's kind of a "smart" drug from the sounds of it. Very new, only been approved for two years. The results show over 50% success rate at putting refractory hodgkins into remission.
I think the reason they can't use it right away though probably has a lot to do with insurance. I'm guessing with it being new and only one company making it, that it's extremely expensive. IIRC it's only approved for use in refractory Hodgkins at this time which is Hodgkins that failed to respond to initial treatment like mine did.
I have to do another treatment in three weeks. Then a few weeks after that another PET scan. If I show a good response to this chemo they will go until they get a clean scan then do the high dose followed by HSCT. If they still can't get things cleaned up they may opt to do an Allogeneic stem cell transplant instead of an autologous. Autologous gives me my own stem cells they collected back after the high dose chemo. Allogeneic gives me a matching donors stem cells instead. Allogeneic has a better chance of keeping the cancer away but carries a lot of other risks and hassles. Autologous has few issues but if they can't get things clean before hand the success rate is lower.
I'm still doing fine otherwise though. Thanks for the support.
Sent from my SCH-R970 using Tapatalk
