› Forums › General Melanoma Community › Stopping Keytruda
- This topic has 18 replies, 4 voices, and was last updated 10 years, 4 months ago by
arthurjedi007.
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- August 9, 2015 at 4:55 pm
We found out that my husband has 24 small brain tumors. He will be doing three weeks of Whole Brain Radiation . When we met with the Dr. she said that when he is done with the WBR he will then have Biochemotherapy. She said he does that or his other option is Hospice. Needless to say we are devastated. Of course, my husband will continue his fight against this beast, but I know the odds are not in his favor. We were told that there is a 60% response rate and out of the 60%… 7-10% go into remission or NED …. The other 50% will get an extension of survival for how long? Of course, no one knows. Just so so scary.
Would greatly appreciate any input or experiences you have had good or bad…
Thank you and God Bless each of you.
Evie
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- August 9, 2015 at 5:18 pm
You are so brave to come here still searching for answers. I think a different opinion might help by a melanoma expert. Bio-chemo is awful stuff, combination of toxic IL2 and interferon and chemo and not proven to increase survival in studies. It would not be a good way to spend remaining time if that is what is happening. Hospice can actually improve outcome but letting the body rest and treating the pain. it is a godsend and the people who work there are also a godsend. You are in my prayers.
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- August 9, 2015 at 5:18 pm
You are so brave to come here still searching for answers. I think a different opinion might help by a melanoma expert. Bio-chemo is awful stuff, combination of toxic IL2 and interferon and chemo and not proven to increase survival in studies. It would not be a good way to spend remaining time if that is what is happening. Hospice can actually improve outcome but letting the body rest and treating the pain. it is a godsend and the people who work there are also a godsend. You are in my prayers.
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- August 9, 2015 at 5:18 pm
You are so brave to come here still searching for answers. I think a different opinion might help by a melanoma expert. Bio-chemo is awful stuff, combination of toxic IL2 and interferon and chemo and not proven to increase survival in studies. It would not be a good way to spend remaining time if that is what is happening. Hospice can actually improve outcome but letting the body rest and treating the pain. it is a godsend and the people who work there are also a godsend. You are in my prayers.
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- August 9, 2015 at 6:16 pm
There is a brand new trial at the university of Illinois in Chicago. It started in May. Someone posted it on here awhile back. It is different than most meds in that it deals with peptides and the nonhuman tests were mostly done on dogs. They are hoping from the animal tests the med will work very well in the brain plus of course a systemic treatment as well. It is for several types of cancer including melanoma. That is not a major melanoma center though but the university of Chicago is pretty good.
Like has already been said a major melanoma center like memorial Sloan Kettering in New York or mda in Houston and many other places might have better options.
Artie
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- August 12, 2015 at 7:30 am
I m interested in this trial. I'lll ask Dr. Gajewski about it when we go on the 25th – but he already said that here weren't any; he knows the case and Arthur my son) so he would know if he was elegible or not.
SarahA
ps – why can't we copy and paste?
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- August 12, 2015 at 7:07 pm
Sarah that one is at a different place in Chicago. I posted the info as a new topic. Hopefully you see it and it helps.
Artie
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- August 12, 2015 at 7:07 pm
Sarah that one is at a different place in Chicago. I posted the info as a new topic. Hopefully you see it and it helps.
Artie
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- August 12, 2015 at 7:07 pm
Sarah that one is at a different place in Chicago. I posted the info as a new topic. Hopefully you see it and it helps.
Artie
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- August 12, 2015 at 7:30 am
I m interested in this trial. I'lll ask Dr. Gajewski about it when we go on the 25th – but he already said that here weren't any; he knows the case and Arthur my son) so he would know if he was elegible or not.
SarahA
ps – why can't we copy and paste?
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- August 12, 2015 at 7:30 am
I m interested in this trial. I'lll ask Dr. Gajewski about it when we go on the 25th – but he already said that here weren't any; he knows the case and Arthur my son) so he would know if he was elegible or not.
SarahA
ps – why can't we copy and paste?
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- August 9, 2015 at 6:16 pm
There is a brand new trial at the university of Illinois in Chicago. It started in May. Someone posted it on here awhile back. It is different than most meds in that it deals with peptides and the nonhuman tests were mostly done on dogs. They are hoping from the animal tests the med will work very well in the brain plus of course a systemic treatment as well. It is for several types of cancer including melanoma. That is not a major melanoma center though but the university of Chicago is pretty good.
Like has already been said a major melanoma center like memorial Sloan Kettering in New York or mda in Houston and many other places might have better options.
Artie
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- August 9, 2015 at 6:16 pm
There is a brand new trial at the university of Illinois in Chicago. It started in May. Someone posted it on here awhile back. It is different than most meds in that it deals with peptides and the nonhuman tests were mostly done on dogs. They are hoping from the animal tests the med will work very well in the brain plus of course a systemic treatment as well. It is for several types of cancer including melanoma. That is not a major melanoma center though but the university of Chicago is pretty good.
Like has already been said a major melanoma center like memorial Sloan Kettering in New York or mda in Houston and many other places might have better options.
Artie
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- August 12, 2015 at 4:21 am
My wife had whole brain radiation in October 2014, and a double craniotomy in December. After those two things, she was on a combination therapy of pembrolizumab and then IL-2 sub-cutaneous injections at her subq mets, that have been working well. The first round of pembro didn't seem to do much, but the second round in combination with the IL-2 went very well. As some others have mentioned, the IL-2 is tough, but our doc thinks that it might be the kick start that the PD-1 ihibitors need to get moving. We're on a tough road, but there is Hope. Keep trusting God, ask a lot of questions to many people, especially your doctors about options that they know about, and that you have heard about, and try to stay positive. Keep moving forward with the best options you have available to you at the time, and above all, keep your faith, as there is only one Healer for melanoma.
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- August 12, 2015 at 6:54 am
I read that if a Dr. is still suggesting/prescribing interferon, to find another Dr. There are too many newer treatments out there. My son went from 3'spots' in his brain to too many we cant even count them, in 1 month! When he started to decline it happened so fast. We started him on WBR for a comfort measure and to buy some time, so we can go back to UCCC for a second infusion of Ketruda. I am looking for a trial, but really, I am a newbie at all of this. Idk the medical terms or the names of all the meds, this all happened so fast. I wish I'd started on this forum in 2013 when both my sons were diagnosed w/melanoma (stage 3A and 3B) Now it's 2 am and I have to sleep because I am my sons caregiver, I took a LOA from work. He is 24 and lives with us. He thinks he can still start school (NIU) in a few weeks (it is his last semestser) because the tumors have caused cognitive loss and dementia.
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- August 12, 2015 at 6:54 am
I read that if a Dr. is still suggesting/prescribing interferon, to find another Dr. There are too many newer treatments out there. My son went from 3'spots' in his brain to too many we cant even count them, in 1 month! When he started to decline it happened so fast. We started him on WBR for a comfort measure and to buy some time, so we can go back to UCCC for a second infusion of Ketruda. I am looking for a trial, but really, I am a newbie at all of this. Idk the medical terms or the names of all the meds, this all happened so fast. I wish I'd started on this forum in 2013 when both my sons were diagnosed w/melanoma (stage 3A and 3B) Now it's 2 am and I have to sleep because I am my sons caregiver, I took a LOA from work. He is 24 and lives with us. He thinks he can still start school (NIU) in a few weeks (it is his last semestser) because the tumors have caused cognitive loss and dementia.
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- August 12, 2015 at 6:54 am
I read that if a Dr. is still suggesting/prescribing interferon, to find another Dr. There are too many newer treatments out there. My son went from 3'spots' in his brain to too many we cant even count them, in 1 month! When he started to decline it happened so fast. We started him on WBR for a comfort measure and to buy some time, so we can go back to UCCC for a second infusion of Ketruda. I am looking for a trial, but really, I am a newbie at all of this. Idk the medical terms or the names of all the meds, this all happened so fast. I wish I'd started on this forum in 2013 when both my sons were diagnosed w/melanoma (stage 3A and 3B) Now it's 2 am and I have to sleep because I am my sons caregiver, I took a LOA from work. He is 24 and lives with us. He thinks he can still start school (NIU) in a few weeks (it is his last semestser) because the tumors have caused cognitive loss and dementia.
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- August 12, 2015 at 4:21 am
My wife had whole brain radiation in October 2014, and a double craniotomy in December. After those two things, she was on a combination therapy of pembrolizumab and then IL-2 sub-cutaneous injections at her subq mets, that have been working well. The first round of pembro didn't seem to do much, but the second round in combination with the IL-2 went very well. As some others have mentioned, the IL-2 is tough, but our doc thinks that it might be the kick start that the PD-1 ihibitors need to get moving. We're on a tough road, but there is Hope. Keep trusting God, ask a lot of questions to many people, especially your doctors about options that they know about, and that you have heard about, and try to stay positive. Keep moving forward with the best options you have available to you at the time, and above all, keep your faith, as there is only one Healer for melanoma.
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- August 12, 2015 at 4:21 am
My wife had whole brain radiation in October 2014, and a double craniotomy in December. After those two things, she was on a combination therapy of pembrolizumab and then IL-2 sub-cutaneous injections at her subq mets, that have been working well. The first round of pembro didn't seem to do much, but the second round in combination with the IL-2 went very well. As some others have mentioned, the IL-2 is tough, but our doc thinks that it might be the kick start that the PD-1 ihibitors need to get moving. We're on a tough road, but there is Hope. Keep trusting God, ask a lot of questions to many people, especially your doctors about options that they know about, and that you have heard about, and try to stay positive. Keep moving forward with the best options you have available to you at the time, and above all, keep your faith, as there is only one Healer for melanoma.
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