› Forums › General Melanoma Community › three doses of ipi
- This topic has 15 replies, 4 voices, and was last updated 10 years, 10 months ago by Tina D.
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- June 19, 2013 at 10:08 pm
I’ve had three doses of ipi and now have colitis and not likely to get the final dose. Just wondered if anyone had any positive news about how the treatment had worked for them even if not able to complete the course.Bit of background. I’m 28. I have tumours in my brain (40), liver, lungs, ovary, spine, abdominal wall. I have had lots of bruising and inflammation whilst taking ipi and have lots of haematomas all over my chest area. I haven’t had complete scans yet whilst on ipi but was supposed to have gamma knife to 5-10 brain mets after round 1 and once the frame was fitted they found 40 so I ended up having wbr instead alongside ipi….its been a long few weeks and been pretty much in bed since. Got scans in the next couple of weeks.
Thanks
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- June 19, 2013 at 11:18 pm
I too developed colitis after 3 doses of Ipi. As hard as it is to believe right now, you do NOT want the 4th dose. Your body is at its maximum ipi immune system response. The only thing that cured my colitis was 2 doses of Remicade–you might want to discuss that with your oncologist so you can start weaning off the steroids.
I was only a partial and short-lived responder to Ipi, which is why I’m awaiting the start of an anti-PD1 trial. I do know that PD1 after Ipi is supposed to produce good results. Catherine at melanoma international is great at finding clinical trials for folks in various countries.
I’m so sorry you’re going through this; I hope you’ll keep us posted.
Karen -
- June 19, 2013 at 11:18 pm
I too developed colitis after 3 doses of Ipi. As hard as it is to believe right now, you do NOT want the 4th dose. Your body is at its maximum ipi immune system response. The only thing that cured my colitis was 2 doses of Remicade–you might want to discuss that with your oncologist so you can start weaning off the steroids.
I was only a partial and short-lived responder to Ipi, which is why I’m awaiting the start of an anti-PD1 trial. I do know that PD1 after Ipi is supposed to produce good results. Catherine at melanoma international is great at finding clinical trials for folks in various countries.
I’m so sorry you’re going through this; I hope you’ll keep us posted.
Karen -
- June 19, 2013 at 11:18 pm
I too developed colitis after 3 doses of Ipi. As hard as it is to believe right now, you do NOT want the 4th dose. Your body is at its maximum ipi immune system response. The only thing that cured my colitis was 2 doses of Remicade–you might want to discuss that with your oncologist so you can start weaning off the steroids.
I was only a partial and short-lived responder to Ipi, which is why I’m awaiting the start of an anti-PD1 trial. I do know that PD1 after Ipi is supposed to produce good results. Catherine at melanoma international is great at finding clinical trials for folks in various countries.
I’m so sorry you’re going through this; I hope you’ll keep us posted.
Karen -
- June 27, 2013 at 2:04 pm
Having an auto-immune response to the ipi is actually a good sign. It shows, as my Dr explained to me, that the ipi has done what it was supposed to and got the immune system ramped up. I can imagine these past weeks have been exhausitng for you, and hoping you have begun to recover. Will look forward to hearing results of your scans. Initial scans do not always show what the ultimate outcome will be, either… because it can take a little time for the ipi to show its effect.
Tina
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- June 27, 2013 at 2:04 pm
Having an auto-immune response to the ipi is actually a good sign. It shows, as my Dr explained to me, that the ipi has done what it was supposed to and got the immune system ramped up. I can imagine these past weeks have been exhausitng for you, and hoping you have begun to recover. Will look forward to hearing results of your scans. Initial scans do not always show what the ultimate outcome will be, either… because it can take a little time for the ipi to show its effect.
Tina
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- June 27, 2013 at 2:04 pm
Having an auto-immune response to the ipi is actually a good sign. It shows, as my Dr explained to me, that the ipi has done what it was supposed to and got the immune system ramped up. I can imagine these past weeks have been exhausitng for you, and hoping you have begun to recover. Will look forward to hearing results of your scans. Initial scans do not always show what the ultimate outcome will be, either… because it can take a little time for the ipi to show its effect.
Tina
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- June 20, 2013 at 1:18 am
The colitis can be treated. To go on the PD-1 trial either Merck or BMS you have to be 4-6 weeks from WBR. My wife has currently dealt with this. She did complete IPI and also had to have WBR after. It does show a good response so far patient that have had IPI then get on one of the PD-1 trials. good luck and keep pushing. following the comments on here will give you some good things to question and look up.
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- June 20, 2013 at 1:18 am
The colitis can be treated. To go on the PD-1 trial either Merck or BMS you have to be 4-6 weeks from WBR. My wife has currently dealt with this. She did complete IPI and also had to have WBR after. It does show a good response so far patient that have had IPI then get on one of the PD-1 trials. good luck and keep pushing. following the comments on here will give you some good things to question and look up.
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- June 20, 2013 at 1:18 am
The colitis can be treated. To go on the PD-1 trial either Merck or BMS you have to be 4-6 weeks from WBR. My wife has currently dealt with this. She did complete IPI and also had to have WBR after. It does show a good response so far patient that have had IPI then get on one of the PD-1 trials. good luck and keep pushing. following the comments on here will give you some good things to question and look up.
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- June 20, 2013 at 1:34 am
Just to be clear…you do NOT have to have whole brain radiation to be in an anti-PD1 trial. You will have to deal with the brain mets…the options include: whole brain radiation, stereotactic radiation, surgery, or resolution just because…which ipi can sometimes help induce…and remain stable for a certain amount of time….before being admitted into an anti-PD1 trial. Trust me. I had a brain met and have completed and a 2 1/2 year anti-PD1 trial and remain NED. With 40 brain mets….you are up against a formidable enemy. BUT…whole brain radiation is not REQUIRED!!!! You do have to deal with the mets in some way…and then have to go through a period of stability…but there are many ways to get there. Wishing you the best. Celeste
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- June 20, 2013 at 1:34 am
Just to be clear…you do NOT have to have whole brain radiation to be in an anti-PD1 trial. You will have to deal with the brain mets…the options include: whole brain radiation, stereotactic radiation, surgery, or resolution just because…which ipi can sometimes help induce…and remain stable for a certain amount of time….before being admitted into an anti-PD1 trial. Trust me. I had a brain met and have completed and a 2 1/2 year anti-PD1 trial and remain NED. With 40 brain mets….you are up against a formidable enemy. BUT…whole brain radiation is not REQUIRED!!!! You do have to deal with the mets in some way…and then have to go through a period of stability…but there are many ways to get there. Wishing you the best. Celeste
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- June 20, 2013 at 1:34 am
Just to be clear…you do NOT have to have whole brain radiation to be in an anti-PD1 trial. You will have to deal with the brain mets…the options include: whole brain radiation, stereotactic radiation, surgery, or resolution just because…which ipi can sometimes help induce…and remain stable for a certain amount of time….before being admitted into an anti-PD1 trial. Trust me. I had a brain met and have completed and a 2 1/2 year anti-PD1 trial and remain NED. With 40 brain mets….you are up against a formidable enemy. BUT…whole brain radiation is not REQUIRED!!!! You do have to deal with the mets in some way…and then have to go through a period of stability…but there are many ways to get there. Wishing you the best. Celeste
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- June 20, 2013 at 1:47 am
That is right. With Keri's brain mets the oncologist recommend WBR. Then on Merck they said 30 from radiation then scan to see if stable and now on BMS you have to be 8 weeks from radition then scan for stable. With Keri we were turned down on Merck due to hemogloban count but BMS said we are good. The only concern with BMS is that it is randomized. good luck and never give up..
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- June 20, 2013 at 1:47 am
That is right. With Keri's brain mets the oncologist recommend WBR. Then on Merck they said 30 from radiation then scan to see if stable and now on BMS you have to be 8 weeks from radition then scan for stable. With Keri we were turned down on Merck due to hemogloban count but BMS said we are good. The only concern with BMS is that it is randomized. good luck and never give up..
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- June 20, 2013 at 1:47 am
That is right. With Keri's brain mets the oncologist recommend WBR. Then on Merck they said 30 from radiation then scan to see if stable and now on BMS you have to be 8 weeks from radition then scan for stable. With Keri we were turned down on Merck due to hemogloban count but BMS said we are good. The only concern with BMS is that it is randomized. good luck and never give up..
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