› Forums › General Melanoma Community › Has anyone had a late response to IPI?
- This topic has 27 replies, 7 voices, and was last updated 11 years, 6 months ago by
JerryfromFauq.
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- June 9, 2013 at 8:48 pm
Scott had his last dose #4 of IPI on April 18th. He had his scan early May. The scan showed growth in tumors and a few new ones. His energy level was very low and was spending a lot of time in bed. Tumors began popping up and were visible through the skin and a few above the skin. Things were looking bad.
Suddenly, in the last week, he is full of energy. He worked in the yard all day today and is spending more time at the office. Crazy Good! He is not on any medication other than pain medication. No steroids or anything else.
Scott had his last dose #4 of IPI on April 18th. He had his scan early May. The scan showed growth in tumors and a few new ones. His energy level was very low and was spending a lot of time in bed. Tumors began popping up and were visible through the skin and a few above the skin. Things were looking bad.
Suddenly, in the last week, he is full of energy. He worked in the yard all day today and is spending more time at the office. Crazy Good! He is not on any medication other than pain medication. No steroids or anything else.
Now if some of these exterior tumors would go away that would be encouraging! I hope Ipi I is doing something. It could be that his body is enjoying a break from treatment, but it could be a positive response.
He is like a different person! I think he could do other treatments now because he's seeming like his old self. Hope this lasts.
Question:
Has anyone had Ipi work for them? Was it at the 8-12 week mark or more like 16 plus weeks? When do you think you knew that is was doing something?
Tell me something good……. 🙂
Lisa (Scott's wife)
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- June 9, 2013 at 9:14 pm
There is a great webinar on MIF’s site that talks about how Ipi works and explains all about a patient who had a late but complete response. I think it’s the immunotherapy one, or maybe Ipi. Check it out. -
- June 9, 2013 at 9:14 pm
There is a great webinar on MIF’s site that talks about how Ipi works and explains all about a patient who had a late but complete response. I think it’s the immunotherapy one, or maybe Ipi. Check it out. -
- June 9, 2013 at 9:14 pm
There is a great webinar on MIF’s site that talks about how Ipi works and explains all about a patient who had a late but complete response. I think it’s the immunotherapy one, or maybe Ipi. Check it out. -
- June 9, 2013 at 9:57 pm
My husband’s doctor says that he has patients that begin to respond up to 4-6 months after their last dose. The way he feels certainly sounds promising. When will he get his next scans? My husband responded very quick (before even his 2nd dose)…doctor was amazed. We knew it was working because he had a GI tumor…he had been bleeding and needing weekly iron infusions. Just before his second dose, his hemoglobin was rising and he never had another infusion.. He had all 4 doses and was NED (2 dead tumors) at his 14 week scans. He progressed at about 5 months (really scary…huge brain met and many other tumors), but started Zelboraf and has been on it for almost 20 months…NED for over a year. Yervoy is still his miracle drug…he had an inoperable tumor next to his heart before he started it. He wouldn’t be alive if it weren’t for Ipi (it’s been almost 2 years since his last Ipi dose). -
- June 9, 2013 at 9:57 pm
My husband’s doctor says that he has patients that begin to respond up to 4-6 months after their last dose. The way he feels certainly sounds promising. When will he get his next scans? My husband responded very quick (before even his 2nd dose)…doctor was amazed. We knew it was working because he had a GI tumor…he had been bleeding and needing weekly iron infusions. Just before his second dose, his hemoglobin was rising and he never had another infusion.. He had all 4 doses and was NED (2 dead tumors) at his 14 week scans. He progressed at about 5 months (really scary…huge brain met and many other tumors), but started Zelboraf and has been on it for almost 20 months…NED for over a year. Yervoy is still his miracle drug…he had an inoperable tumor next to his heart before he started it. He wouldn’t be alive if it weren’t for Ipi (it’s been almost 2 years since his last Ipi dose). -
- June 9, 2013 at 9:57 pm
My husband’s doctor says that he has patients that begin to respond up to 4-6 months after their last dose. The way he feels certainly sounds promising. When will he get his next scans? My husband responded very quick (before even his 2nd dose)…doctor was amazed. We knew it was working because he had a GI tumor…he had been bleeding and needing weekly iron infusions. Just before his second dose, his hemoglobin was rising and he never had another infusion.. He had all 4 doses and was NED (2 dead tumors) at his 14 week scans. He progressed at about 5 months (really scary…huge brain met and many other tumors), but started Zelboraf and has been on it for almost 20 months…NED for over a year. Yervoy is still his miracle drug…he had an inoperable tumor next to his heart before he started it. He wouldn’t be alive if it weren’t for Ipi (it’s been almost 2 years since his last Ipi dose). -
- June 9, 2013 at 10:51 pm
Lisa,
I have known at least one person that his first response to Ipi was approximately one year after its administration. One can nevef tell for sure, Scott is well within the possible response times for IPI. Great for him (and you!)
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- June 9, 2013 at 10:51 pm
Lisa,
I have known at least one person that his first response to Ipi was approximately one year after its administration. One can nevef tell for sure, Scott is well within the possible response times for IPI. Great for him (and you!)
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- June 9, 2013 at 10:51 pm
Lisa,
I have known at least one person that his first response to Ipi was approximately one year after its administration. One can nevef tell for sure, Scott is well within the possible response times for IPI. Great for him (and you!)
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- June 10, 2013 at 2:54 am
Lisa, I have no information on Ipi, since Phil has never done it, but I am thrilled to see your post! So glad Scott is feeling better and enjoying some renewed energy. I am glad for you too, you have been thru so much in a short time, it must be a huge relief to have some good days! Keep the faith, and I hope Ipi continues to boost Scott’s immune system. Take care, Valerie (Phil’s wife) -
- June 10, 2013 at 2:54 am
Lisa, I have no information on Ipi, since Phil has never done it, but I am thrilled to see your post! So glad Scott is feeling better and enjoying some renewed energy. I am glad for you too, you have been thru so much in a short time, it must be a huge relief to have some good days! Keep the faith, and I hope Ipi continues to boost Scott’s immune system. Take care, Valerie (Phil’s wife) -
- June 10, 2013 at 2:54 am
Lisa, I have no information on Ipi, since Phil has never done it, but I am thrilled to see your post! So glad Scott is feeling better and enjoying some renewed energy. I am glad for you too, you have been thru so much in a short time, it must be a huge relief to have some good days! Keep the faith, and I hope Ipi continues to boost Scott’s immune system. Take care, Valerie (Phil’s wife) -
- June 13, 2013 at 3:17 am
We have asked the same questions. My wife finished her IPI treatments and had 1 or 2 slight changes and slow downs. The response was not what we were looking for. We now have made it into a clinical trial. Keri had her vitals and scans Monday and Tuesday. We are looking for her first infusion next week.. A few things we have read and have been told is the IPI primes the system for the next immune therapy. Her last IPI was in March .
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- June 13, 2013 at 3:17 am
We have asked the same questions. My wife finished her IPI treatments and had 1 or 2 slight changes and slow downs. The response was not what we were looking for. We now have made it into a clinical trial. Keri had her vitals and scans Monday and Tuesday. We are looking for her first infusion next week.. A few things we have read and have been told is the IPI primes the system for the next immune therapy. Her last IPI was in March .
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- June 13, 2013 at 3:17 am
We have asked the same questions. My wife finished her IPI treatments and had 1 or 2 slight changes and slow downs. The response was not what we were looking for. We now have made it into a clinical trial. Keri had her vitals and scans Monday and Tuesday. We are looking for her first infusion next week.. A few things we have read and have been told is the IPI primes the system for the next immune therapy. Her last IPI was in March .
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- June 15, 2013 at 6:16 am
Anaraticle from the Cancer network says:
The combination of ipilimumab and dacarbazine(Drug information on dacarbazine) (DTIC) appears to be better than either drug administered alone (in previously untreated patients), with higher overall median survival rates detectable even at 3 years.[10-11] It has been pointed out that response to ipilimumab may be highly atypical, with some delayed responders not being apparent up to and beyond one year of therapy.[12] An increase in absolute peripheral lymphocyte count may portend better clinical response and/or overall survival.[9]
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- June 15, 2013 at 6:16 am
Anaraticle from the Cancer network says:
The combination of ipilimumab and dacarbazine(Drug information on dacarbazine) (DTIC) appears to be better than either drug administered alone (in previously untreated patients), with higher overall median survival rates detectable even at 3 years.[10-11] It has been pointed out that response to ipilimumab may be highly atypical, with some delayed responders not being apparent up to and beyond one year of therapy.[12] An increase in absolute peripheral lymphocyte count may portend better clinical response and/or overall survival.[9]
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- June 15, 2013 at 6:16 am
Anaraticle from the Cancer network says:
The combination of ipilimumab and dacarbazine(Drug information on dacarbazine) (DTIC) appears to be better than either drug administered alone (in previously untreated patients), with higher overall median survival rates detectable even at 3 years.[10-11] It has been pointed out that response to ipilimumab may be highly atypical, with some delayed responders not being apparent up to and beyond one year of therapy.[12] An increase in absolute peripheral lymphocyte count may portend better clinical response and/or overall survival.[9]
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- June 10, 2013 at 2:19 am
Zelboraf shrank the brain tumor just a bit. He did have to have a craniotomy, followed by gamma knife. Zelboraf did shrink all the other multiple other tumors throughout his body. It took about 6 months of off and on Zelboraf (had to come off for surgery and gamma knife). Then, his liver about gave out, so he had to stop again. He finally started back on a reduced dose os Zelboraf and has been fine ever since. We’ve done lots of research and have read some about Ipi, followed by SRS or Gamma knife, somehow turns into a magical combination for some patients. Who knows why he’s NED and how long he’ll stay that way, be we are grateful for the time he has been given. -
- June 10, 2013 at 2:19 am
Zelboraf shrank the brain tumor just a bit. He did have to have a craniotomy, followed by gamma knife. Zelboraf did shrink all the other multiple other tumors throughout his body. It took about 6 months of off and on Zelboraf (had to come off for surgery and gamma knife). Then, his liver about gave out, so he had to stop again. He finally started back on a reduced dose os Zelboraf and has been fine ever since. We’ve done lots of research and have read some about Ipi, followed by SRS or Gamma knife, somehow turns into a magical combination for some patients. Who knows why he’s NED and how long he’ll stay that way, be we are grateful for the time he has been given. -
- June 10, 2013 at 2:19 am
Zelboraf shrank the brain tumor just a bit. He did have to have a craniotomy, followed by gamma knife. Zelboraf did shrink all the other multiple other tumors throughout his body. It took about 6 months of off and on Zelboraf (had to come off for surgery and gamma knife). Then, his liver about gave out, so he had to stop again. He finally started back on a reduced dose os Zelboraf and has been fine ever since. We’ve done lots of research and have read some about Ipi, followed by SRS or Gamma knife, somehow turns into a magical combination for some patients. Who knows why he’s NED and how long he’ll stay that way, be we are grateful for the time he has been given.
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