› Forums › General Melanoma Community › TIL and Pain management
- This topic has 6 replies, 2 voices, and was last updated 11 years ago by
snbsmith1.
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- September 5, 2014 at 3:23 am
My brother is in treatment for stage 4, recently experienced mixed response to AntiPD1, now on to TIL therapy at the NIH. He's having a tumor excised next week and then will have to wait a few weeks whils his TILs hopefully grow. Unfortunately he is also experiencing a lot of pain from a cluster of tumors that are not operable at this time. He's looking into options to manage his pain and wondering what experiences anyone has had with:
– General pain management strategies — in addition to narcotics including Lyrica, MS Contin and Dilaudid we are consulting with pain management team to look at nerve blocks and other options. Also trying accupuncture
– TIL treatment while on narcotics or other treatment for pain management (particularly since he's in a waiting period for TIL therapy to start)
– Options people have used to treat a specific troublesome tumor — radiation therapy, someone else mentioned injections of IL-2, others?
– Anyone with experience going for a second round of Zelboraf to shrink a troublesome tumor?
Any and all thoughts on these questions much appreciated!
Thanks,
Meg
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- September 5, 2014 at 4:41 am
I went through TIL cell therapy at NIH from 2010-11 and received pain medication from NIH following my tumor harvest procedure, which ended up being a small bowel resection. I believe it was morphine via IV for a couple of days while I was an inpatient and they sent me home with oxycodone (Percocet) or hydrocodone (Vicodin). I ended up not needing what they sent me home with, and while not to treat pain from tumors, it was prescribed by them (NIH), so probably not in conflict with any of the treatment plans. I was back to NIH about 4 weeks later after my cells were ready.
Best bet, though, is to contact them and confirm. He should have been assigned a fellow who will probably end up being one of the people he has the most contact with, since the attending physicians rotate duty every few months. I believe TIL inpatients are still all on the 3NW unit of the Clinical Center — there is a number that can be called 24/7 and then ask for the "charge nurse", but until he's stayed there as an inpatient yet, they may not be familiar with him. So I'd start with the fellow assigned to him, they're pretty responsive.
Best wishes to your brother for a successful treatment and hoping he can find some relief from the pain in the meantime,
Joe -
- September 5, 2014 at 4:41 am
I went through TIL cell therapy at NIH from 2010-11 and received pain medication from NIH following my tumor harvest procedure, which ended up being a small bowel resection. I believe it was morphine via IV for a couple of days while I was an inpatient and they sent me home with oxycodone (Percocet) or hydrocodone (Vicodin). I ended up not needing what they sent me home with, and while not to treat pain from tumors, it was prescribed by them (NIH), so probably not in conflict with any of the treatment plans. I was back to NIH about 4 weeks later after my cells were ready.
Best bet, though, is to contact them and confirm. He should have been assigned a fellow who will probably end up being one of the people he has the most contact with, since the attending physicians rotate duty every few months. I believe TIL inpatients are still all on the 3NW unit of the Clinical Center — there is a number that can be called 24/7 and then ask for the "charge nurse", but until he's stayed there as an inpatient yet, they may not be familiar with him. So I'd start with the fellow assigned to him, they're pretty responsive.
Best wishes to your brother for a successful treatment and hoping he can find some relief from the pain in the meantime,
Joe -
- September 5, 2014 at 4:41 am
I went through TIL cell therapy at NIH from 2010-11 and received pain medication from NIH following my tumor harvest procedure, which ended up being a small bowel resection. I believe it was morphine via IV for a couple of days while I was an inpatient and they sent me home with oxycodone (Percocet) or hydrocodone (Vicodin). I ended up not needing what they sent me home with, and while not to treat pain from tumors, it was prescribed by them (NIH), so probably not in conflict with any of the treatment plans. I was back to NIH about 4 weeks later after my cells were ready.
Best bet, though, is to contact them and confirm. He should have been assigned a fellow who will probably end up being one of the people he has the most contact with, since the attending physicians rotate duty every few months. I believe TIL inpatients are still all on the 3NW unit of the Clinical Center — there is a number that can be called 24/7 and then ask for the "charge nurse", but until he's stayed there as an inpatient yet, they may not be familiar with him. So I'd start with the fellow assigned to him, they're pretty responsive.
Best wishes to your brother for a successful treatment and hoping he can find some relief from the pain in the meantime,
Joe
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