› Forums › General Melanoma Community › Started pallative care. Quick Update
- This topic has 15 replies, 3 voices, and was last updated 8 years, 6 months ago by
emagdnim83.
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- October 26, 2015 at 12:30 pm
Hi everyone,
i've posted a few times about my fathers journey with metastatic amelanotic melanoma. A few Days ago i've posted about him here: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/wbr-or-pallative-care
We didn't do WBR because our oncologist and the folks at the pallative station in our hospital told us he wouldn't benefit from it and it would just be a additional burden for him. He would have to stay two more weeks in the hospital for the radiation treatment and maybe just get a few weeks more to live. He has multiple mets, including one "big one", in the brain which have bled last weekend and started growing only 5 weeks ago (last CT Mid September didnt show any brain mets). He is in the hospital since last monday. First days were hard (could barely speak and concentrate, didn't remember much, bedridden, was very very confused, slept very much, did barely eat and drink, karnovsky 20%). His condition is now a lot better (maybe thanks to cortison and pain meds), he is able to have a conversation, does eat and drink very well (even beer and wine!), he even is able to walk some steps (with someone helping him a bit). Sometimes he is still confused and talks about strange things and his short-term memory is very bad. But all in all he is now in a suprisingly good condition. He will leave hospital tomorrow and we can bring him home.
He doesn't get any cancer treatment at the moment. His first and last Nivolumab-Infusion was 4 Weeks ago @ 3mg/kg. Our Oncologist says it will not help him anymore and since he has now multiple brain mets (plus mets nearly everywhere else) it wouldn't help fast enough if it would help with brain mets at all. Plus, he thinks that the side effects (he was very short of breath after his first dose) would be a additional burden now.
Should i try to convince him to give him at least one more infusion with for example at least 1mg/kg to lower side effects? I really have a hard to just not do anything now. Another doctor who visited him in the hospital said he could have even "some months" left (if the mets don't decide to bleed again!) because his blood test results were pretty good and his general state has improved so much in the last few days…
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- October 26, 2015 at 12:53 pm
How about the tafinlar mekenist combo? I know zelboraf failed him. It failed me too. But I did get some benefit from the combo. I know rick's wife was almost gone but they put her back on it and she recovered. I would think that is worth a shot. Since time is of the essence might even buy the first month or couple weeks if you can so don't have to wait on insurance. My insurance ok'd very first day but I've heard others not. That way your doc can have him on it immediately. Not sure if a low dose nivo would have enough time to help.
Artie
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- October 26, 2015 at 1:04 pm
Thank you Artie,
i will talk about this combo with our oncologist. I don't really know if Zelboraf really failed on him. He was 3 Months on Zelboraf and CT then showed progression but not so much (discrete progression on his bone mets and small liver mets). Since being off Zelboraf it exploded – so maybe Zelboraf didn't shrink his tumor load but it seems to at least have slowed the progression.
Problem is, he had strong side effects while being on zelboraf (had to reduce the dose after 2 weeks to 2-0-2, then added one in the evening so then 2-0-3. Extreme Fatigue was the worst). I think he will get even stronger side effects with this combination so i don't if it is worth it regarding quality of life.
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- October 26, 2015 at 4:24 pm
The side affects of the taf Mek combo have been documented to be way less than the side affects when given individually.
As far as side affects comparing the taf Mek combo to zelboraf I can only speak from personal experience. Zelboraf for me was a nightmare. Over 2 dozen side affects making quality of life not good. But the taf Mek combo side affects were like night and day. For the first two weeks it was like taking nothing. I was shocked expecting another nightmare. After that I did develop a twice daily fever of 103 that Tylenol took care of. So the first 8 weeks were pretty good compared to zelboraf. After that I did have side affects so had to stop them. Also zelboraf were like horse pills. So huge. The taf Mek were easy modern pills like Tylenol.
Of course everyone is different but it might be worth it if it gets him in even better shape he might even get good enough to enjoy Christmas. I still remember Rick's story. He had tried everything for his wife. The taf Mek combo had done some good and everything seemed it was going good until all of a sudden brain and other stuff hit really fast. The docs had given up and only gave her a few days to a week or so. He had them restart the taf Mek combo and fairly quickly she was able to recover some. Last I heard she was able to read and even go for short walks. Dunno how she is now but those pills bought her some good times again.
Artie
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- October 26, 2015 at 4:24 pm
The side affects of the taf Mek combo have been documented to be way less than the side affects when given individually.
As far as side affects comparing the taf Mek combo to zelboraf I can only speak from personal experience. Zelboraf for me was a nightmare. Over 2 dozen side affects making quality of life not good. But the taf Mek combo side affects were like night and day. For the first two weeks it was like taking nothing. I was shocked expecting another nightmare. After that I did develop a twice daily fever of 103 that Tylenol took care of. So the first 8 weeks were pretty good compared to zelboraf. After that I did have side affects so had to stop them. Also zelboraf were like horse pills. So huge. The taf Mek were easy modern pills like Tylenol.
Of course everyone is different but it might be worth it if it gets him in even better shape he might even get good enough to enjoy Christmas. I still remember Rick's story. He had tried everything for his wife. The taf Mek combo had done some good and everything seemed it was going good until all of a sudden brain and other stuff hit really fast. The docs had given up and only gave her a few days to a week or so. He had them restart the taf Mek combo and fairly quickly she was able to recover some. Last I heard she was able to read and even go for short walks. Dunno how she is now but those pills bought her some good times again.
Artie
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- October 26, 2015 at 4:24 pm
The side affects of the taf Mek combo have been documented to be way less than the side affects when given individually.
As far as side affects comparing the taf Mek combo to zelboraf I can only speak from personal experience. Zelboraf for me was a nightmare. Over 2 dozen side affects making quality of life not good. But the taf Mek combo side affects were like night and day. For the first two weeks it was like taking nothing. I was shocked expecting another nightmare. After that I did develop a twice daily fever of 103 that Tylenol took care of. So the first 8 weeks were pretty good compared to zelboraf. After that I did have side affects so had to stop them. Also zelboraf were like horse pills. So huge. The taf Mek were easy modern pills like Tylenol.
Of course everyone is different but it might be worth it if it gets him in even better shape he might even get good enough to enjoy Christmas. I still remember Rick's story. He had tried everything for his wife. The taf Mek combo had done some good and everything seemed it was going good until all of a sudden brain and other stuff hit really fast. The docs had given up and only gave her a few days to a week or so. He had them restart the taf Mek combo and fairly quickly she was able to recover some. Last I heard she was able to read and even go for short walks. Dunno how she is now but those pills bought her some good times again.
Artie
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- October 26, 2015 at 1:04 pm
Thank you Artie,
i will talk about this combo with our oncologist. I don't really know if Zelboraf really failed on him. He was 3 Months on Zelboraf and CT then showed progression but not so much (discrete progression on his bone mets and small liver mets). Since being off Zelboraf it exploded – so maybe Zelboraf didn't shrink his tumor load but it seems to at least have slowed the progression.
Problem is, he had strong side effects while being on zelboraf (had to reduce the dose after 2 weeks to 2-0-2, then added one in the evening so then 2-0-3. Extreme Fatigue was the worst). I think he will get even stronger side effects with this combination so i don't if it is worth it regarding quality of life.
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- October 26, 2015 at 1:04 pm
Thank you Artie,
i will talk about this combo with our oncologist. I don't really know if Zelboraf really failed on him. He was 3 Months on Zelboraf and CT then showed progression but not so much (discrete progression on his bone mets and small liver mets). Since being off Zelboraf it exploded – so maybe Zelboraf didn't shrink his tumor load but it seems to at least have slowed the progression.
Problem is, he had strong side effects while being on zelboraf (had to reduce the dose after 2 weeks to 2-0-2, then added one in the evening so then 2-0-3. Extreme Fatigue was the worst). I think he will get even stronger side effects with this combination so i don't if it is worth it regarding quality of life.
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- October 27, 2015 at 4:03 pm
I asked about this combination therapy and they think it wouldn't work on him because he had so strong side effects on zelboraf and because of his karnowsky-index only 40%. No Chance, it seems.
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- October 27, 2015 at 4:03 pm
I asked about this combination therapy and they think it wouldn't work on him because he had so strong side effects on zelboraf and because of his karnowsky-index only 40%. No Chance, it seems.
-
- October 27, 2015 at 4:03 pm
I asked about this combination therapy and they think it wouldn't work on him because he had so strong side effects on zelboraf and because of his karnowsky-index only 40%. No Chance, it seems.
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- October 26, 2015 at 12:53 pm
How about the tafinlar mekenist combo? I know zelboraf failed him. It failed me too. But I did get some benefit from the combo. I know rick's wife was almost gone but they put her back on it and she recovered. I would think that is worth a shot. Since time is of the essence might even buy the first month or couple weeks if you can so don't have to wait on insurance. My insurance ok'd very first day but I've heard others not. That way your doc can have him on it immediately. Not sure if a low dose nivo would have enough time to help.
Artie
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- October 26, 2015 at 12:53 pm
How about the tafinlar mekenist combo? I know zelboraf failed him. It failed me too. But I did get some benefit from the combo. I know rick's wife was almost gone but they put her back on it and she recovered. I would think that is worth a shot. Since time is of the essence might even buy the first month or couple weeks if you can so don't have to wait on insurance. My insurance ok'd very first day but I've heard others not. That way your doc can have him on it immediately. Not sure if a low dose nivo would have enough time to help.
Artie
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