› Forums › General Melanoma Community › Finished IL-2 – back at work
- This topic has 18 replies, 4 voices, and was last updated 13 years, 12 months ago by
NYKaren.
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- December 12, 2011 at 11:53 pm
Hi everyone,
I finished my second round of IL-2 LAST Sunday and returned to work part-time today.
What a rough treatment. They were shocked that I finished all 8 bags (Yale-New Haven has a different protocol–it's a different dosage and fewer bags).
When I went to Dr. Sznol for check-up the Thursday after the Sunday I was released, he says that's always when he sees people at their worst. I felt like someone had run me over with a truck and hung me on a peg to dry.
Hi everyone,
I finished my second round of IL-2 LAST Sunday and returned to work part-time today.
What a rough treatment. They were shocked that I finished all 8 bags (Yale-New Haven has a different protocol–it's a different dosage and fewer bags).
When I went to Dr. Sznol for check-up the Thursday after the Sunday I was released, he says that's always when he sees people at their worst. I felt like someone had run me over with a truck and hung me on a peg to dry.
Having said all that, I'm much better today and plan to start working full time on Wednesday.
So before I went in we knew that the nodes that had lit up on prior PET's don't light up anymore. A lot of the mel is gone from my face, so we know that I'm at least a partial responder. Unfortunately, I continue to get small spots…going to see Dr. Halpern (derm @ Sloan) hopefully next week and lining up a visit in 1 month for some punch biopsies, then scans.
They wanted me to get into the Gentech anti-PD1 trial, but interestingly, it does not include the "stage III unresectible"…it's strictly for Stage IV.
Dr. Sznol also told me that GSK will be doing a Phase 3 anti PD-1 trial in about 4 months that I should be able to get into.
So now it's wait and see & pray that I stay at IIIC for the next 4 months.
That's it for now…take care my friends.
karen
- Replies
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- December 13, 2011 at 12:26 am
Karen,
this is great news…and your doctor is smart to encourage you onto anti PD-1 ligand therapy. There is a good webinar discussing anti PD1 on melanoma international website.
so far, this is what i have learned (remembered)….
response rates (full and partial-partial being 50% reduction in tumors)
IL2 10%
IPI 15%
AntiPD1 30%
response rates seem to be long lasting…
prior ipi use does not seem to hinder antiPD1 responses…not sure about IL2
Side Effects
arthragia, sore mouth, rash, abnormal labs
more serious…shortness of breath, endocrine interactions
There are about 5 drug companies starting trials…curetech, Bristol-Myers, genentech, GSM are the four i remember.
they want to combine this drug with others (because of the long lasting results they get and low side effects…)
-ipi, braf drugs and il2…but, they are especially interested in combination with interleukin alpha.
You were very brave to do IL2 and it seems to have worked
boots
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- December 13, 2011 at 12:26 am
Karen,
this is great news…and your doctor is smart to encourage you onto anti PD-1 ligand therapy. There is a good webinar discussing anti PD1 on melanoma international website.
so far, this is what i have learned (remembered)….
response rates (full and partial-partial being 50% reduction in tumors)
IL2 10%
IPI 15%
AntiPD1 30%
response rates seem to be long lasting…
prior ipi use does not seem to hinder antiPD1 responses…not sure about IL2
Side Effects
arthragia, sore mouth, rash, abnormal labs
more serious…shortness of breath, endocrine interactions
There are about 5 drug companies starting trials…curetech, Bristol-Myers, genentech, GSM are the four i remember.
they want to combine this drug with others (because of the long lasting results they get and low side effects…)
-ipi, braf drugs and il2…but, they are especially interested in combination with interleukin alpha.
You were very brave to do IL2 and it seems to have worked
boots
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- December 13, 2011 at 12:30 am
You are also very lucky to have aggressive adjuvant therapy….i always thought you were stage 4 in that you were given IPI and IL2…they must have just opened these therapies up now for adjuvant use…something i feel they should have done for me.
boots
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- December 13, 2011 at 12:30 am
You are also very lucky to have aggressive adjuvant therapy….i always thought you were stage 4 in that you were given IPI and IL2…they must have just opened these therapies up now for adjuvant use…something i feel they should have done for me.
boots
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- December 13, 2011 at 12:30 am
You are also very lucky to have aggressive adjuvant therapy….i always thought you were stage 4 in that you were given IPI and IL2…they must have just opened these therapies up now for adjuvant use…something i feel they should have done for me.
boots
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- December 13, 2011 at 12:26 am
Karen,
this is great news…and your doctor is smart to encourage you onto anti PD-1 ligand therapy. There is a good webinar discussing anti PD1 on melanoma international website.
so far, this is what i have learned (remembered)….
response rates (full and partial-partial being 50% reduction in tumors)
IL2 10%
IPI 15%
AntiPD1 30%
response rates seem to be long lasting…
prior ipi use does not seem to hinder antiPD1 responses…not sure about IL2
Side Effects
arthragia, sore mouth, rash, abnormal labs
more serious…shortness of breath, endocrine interactions
There are about 5 drug companies starting trials…curetech, Bristol-Myers, genentech, GSM are the four i remember.
they want to combine this drug with others (because of the long lasting results they get and low side effects…)
-ipi, braf drugs and il2…but, they are especially interested in combination with interleukin alpha.
You were very brave to do IL2 and it seems to have worked
boots
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- December 13, 2011 at 12:32 am
Just a thought, NIH. They may take you immediately. I went through their trial five years ago. If interested you might read my small story.
Google my name, warren Galinat, and see “white brows”. In any case, the best of luck to you !!-
- December 13, 2011 at 3:45 am
Thanks, I'll look into NIH.
Also, I meant to say Curetech, not Gentech.
Yes, Boots, I'm IIIC. I'm one of those cases where the docs say "Hmmm, we've never seen anything like this before…" as in WLE w/clear margins and clean SNB in November, recurrence in February.
Anti-PDI really looks good. I guess I'll know more after next set of biopsies/scans.
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- December 13, 2011 at 3:45 am
Thanks, I'll look into NIH.
Also, I meant to say Curetech, not Gentech.
Yes, Boots, I'm IIIC. I'm one of those cases where the docs say "Hmmm, we've never seen anything like this before…" as in WLE w/clear margins and clean SNB in November, recurrence in February.
Anti-PDI really looks good. I guess I'll know more after next set of biopsies/scans.
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- December 13, 2011 at 3:48 am
Also Boots, I got Ipi right after it was FDA approved. There was a little lag time between when it was approved and stocked for use. I might have been my insurance company's first case, because they said "no prior approval needed for chemotherapy." I bet they were shocked!
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- December 13, 2011 at 3:48 am
Also Boots, I got Ipi right after it was FDA approved. There was a little lag time between when it was approved and stocked for use. I might have been my insurance company's first case, because they said "no prior approval needed for chemotherapy." I bet they were shocked!
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- December 13, 2011 at 3:48 am
Also Boots, I got Ipi right after it was FDA approved. There was a little lag time between when it was approved and stocked for use. I might have been my insurance company's first case, because they said "no prior approval needed for chemotherapy." I bet they were shocked!
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- December 13, 2011 at 3:45 am
Thanks, I'll look into NIH.
Also, I meant to say Curetech, not Gentech.
Yes, Boots, I'm IIIC. I'm one of those cases where the docs say "Hmmm, we've never seen anything like this before…" as in WLE w/clear margins and clean SNB in November, recurrence in February.
Anti-PDI really looks good. I guess I'll know more after next set of biopsies/scans.
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