› Forums › General Melanoma Community › After Keytruda fails. . . Help pleeeeaaaase!
- This topic has 9 replies, 3 voices, and was last updated 9 years, 3 months ago by
arthurjedi007.
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- January 28, 2015 at 9:20 pm
Hi, all —
I posted this a couple days ago but think it got lost in the shuffle, and I'm completely overwhelmed with all the issues over the past few days. Dad was hospitalized after his PET/CT with pneumonia which caused rigors and delirium. He was discharged last night and is back home, but he's still a little confused and having cognitive issues (which were not there previously.) This they are blaming on the infection, as the elderly often exhibit confusion with systemic infections. On top of that, they lost Dad's upper denture while at the hospital, so I'm trying to find a dentist to get that done ASAP, though it seems it will be out-of-pocket. They also want him to do physical therapy, as he came out of the hospital rather shaky and unsteady.
I am also supposed to make a decision about what to do with his melanoma treatment. His PET/CT showed some shrinkage of his smallest tumors after four doses of Keytruda, but the largest ones have grown, most by just a couple mm but some quite a bit more.
For example, his report says, "Representative left lower lobe pulmonary nodule previously measuring 1.9 cm, now measures 2.6 cm … Representative right middle lobe pulmonary nodule previously measuring 1.7 cm, now measures 2.3 cm … Representative right upper lobe pulmonary nodule previously measuring 2.9 cm, now measures 3.6 cm"
The new tumor (since starting Keytruda) seems to be growing quickly: "Interval increase in size of hypoattenuating segment 8/4A liver lesion previously measuring 1.8 x 1.5 cm, now measuring up to 3.9 x 3.8 cm with interval increase in FDG avidityInterval from SUV Max of 4.0 to SUV Max of 7.5."
His doctor at UCSF, Adil Daud, feels that it's time to try something else. I asked him about the reports of late responders, and he said that while that can happen, his experience after leading trials of the drug for the past couple years is that people who are going to respond usually do by this point. He has suggested the following options:
1. Switch to Nivo, still a PD-1 but a different chemical, which could trigger a different response;
2. Try Temodar, a chemotherapy pill with very mild side effects but a response rate of only 10-12%;
3. Try two more infusions of Keytruda but at 2-week intervals.
I haven't heard before of people switching from one PD-1 to another, nor do I know anything about Temodar. If anyone has any insight, I would really, really appreciate it. I'm getting to the end of my rope here and really am not able to think clearly enough (or have the time to investigate enough) to feel like I can make a good decision.
Thanks very much!
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- January 29, 2015 at 12:55 am
I wish I had some advice but I'm not knowledgable enough on PD-1's, Temodar etc… Did Dr. Daud have a suggestion in regards to what he feels would be best option? I'm sure there isn't enough data to even know if they switch to Nivo what response rate is. Does he think Keytruda still may respond? I'm not sure that there is a delayed response with these theraphies. Someone on this board will have more insight. I'm so sorry for what you're dad and you are going through.
Josh
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- January 29, 2015 at 4:52 am
Thanks, Josh. Dr. Daud was really hoping that Keytruda would do the trick. Right now, he says his concern is to avoid putting Dad through anything too toxic, and I certainly agree with that. He really left it up to us, but what I felt that he thought was: 1) more infusions of Keytruda aren't likely to work, 2) from a medical standpoint he -should- suggest Temodar, but 3) what he'd like to try is Nivo. Again, that was just my interpretation since he pointed out that Dad did have some response to Keytruda, and Nivo is a similar drug but a different chemical. However, since Dad was there beside me shaking like a leaf, I was half panicked and not well focused. Certainly, I didn't ask as many questions as I should have, but at that point I just wanted to get Dad's shaking under control. As for the delayed responses, they can happen but apparently aren't as common as with Ipi.
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- January 29, 2015 at 4:52 am
Thanks, Josh. Dr. Daud was really hoping that Keytruda would do the trick. Right now, he says his concern is to avoid putting Dad through anything too toxic, and I certainly agree with that. He really left it up to us, but what I felt that he thought was: 1) more infusions of Keytruda aren't likely to work, 2) from a medical standpoint he -should- suggest Temodar, but 3) what he'd like to try is Nivo. Again, that was just my interpretation since he pointed out that Dad did have some response to Keytruda, and Nivo is a similar drug but a different chemical. However, since Dad was there beside me shaking like a leaf, I was half panicked and not well focused. Certainly, I didn't ask as many questions as I should have, but at that point I just wanted to get Dad's shaking under control. As for the delayed responses, they can happen but apparently aren't as common as with Ipi.
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- January 29, 2015 at 4:52 am
Thanks, Josh. Dr. Daud was really hoping that Keytruda would do the trick. Right now, he says his concern is to avoid putting Dad through anything too toxic, and I certainly agree with that. He really left it up to us, but what I felt that he thought was: 1) more infusions of Keytruda aren't likely to work, 2) from a medical standpoint he -should- suggest Temodar, but 3) what he'd like to try is Nivo. Again, that was just my interpretation since he pointed out that Dad did have some response to Keytruda, and Nivo is a similar drug but a different chemical. However, since Dad was there beside me shaking like a leaf, I was half panicked and not well focused. Certainly, I didn't ask as many questions as I should have, but at that point I just wanted to get Dad's shaking under control. As for the delayed responses, they can happen but apparently aren't as common as with Ipi.
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- January 29, 2015 at 12:55 am
I wish I had some advice but I'm not knowledgable enough on PD-1's, Temodar etc… Did Dr. Daud have a suggestion in regards to what he feels would be best option? I'm sure there isn't enough data to even know if they switch to Nivo what response rate is. Does he think Keytruda still may respond? I'm not sure that there is a delayed response with these theraphies. Someone on this board will have more insight. I'm so sorry for what you're dad and you are going through.
Josh
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- January 29, 2015 at 12:55 am
I wish I had some advice but I'm not knowledgable enough on PD-1's, Temodar etc… Did Dr. Daud have a suggestion in regards to what he feels would be best option? I'm sure there isn't enough data to even know if they switch to Nivo what response rate is. Does he think Keytruda still may respond? I'm not sure that there is a delayed response with these theraphies. Someone on this board will have more insight. I'm so sorry for what you're dad and you are going through.
Josh
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- February 3, 2015 at 4:10 pm
Hope he is getting treated with something whatever decision you make and hope it helps.
Artie
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- February 3, 2015 at 4:10 pm
Hope he is getting treated with something whatever decision you make and hope it helps.
Artie
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- February 3, 2015 at 4:10 pm
Hope he is getting treated with something whatever decision you make and hope it helps.
Artie
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