› Forums › General Melanoma Community › Nausea and foggy brain on BRAF and MEK
- This topic has 18 replies, 4 voices, and was last updated 8 years, 11 months ago by
Terrified.
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- December 14, 2016 at 3:48 am
We are now three weeks on Tafinkar and Mekenist. Not the rapid response that so many people have. Stage four with large tumor load to lungs/liver/spleen and bone with solitary brain met treated with gamma knife. He definitely has way less pain n back, hips and ribs, so it must be working there. But has had increased nausea, on 8 mg Zofran three times a day and still hurls up evening dose of Tafinlar.
Any other ideas to control nausea?
The other issu is he seems very foggy more so. Is that a side effect of the chemo, a side effect of 10 of OxyContin twice a day for bone pain, a side effect of the Zofran, a side effect of the radiation three weeks ago or are there new brain mets? He has scans in three week after being on medications for six weeks.
Judy
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- December 14, 2016 at 4:24 pm
Ugh… nausea… Zofran is not particularly effective in everyone, and it is possible to build up a tolerance to it. If his docs know that he is having such a difficult time keeping his evening dose of Taf down, they can prescribe something that might work better for him. His nausea may be coming from any number of things he has going on. Chronic pain, OxyContin, and a potential increase in edema on the gamma radiated lesion could all toss things into turmoil with the stomach as well as the brain fog. I'm sorry to hear that the road hasn't smoothed more quickly for him, but hopefully those upcoming scans will reveal some good news! Finding a balance in meds versus side effects can be a true project!
Less pain in the back, hips and ribs is something to hold onto! Sending positive vibes for bigger tumor reduction than even the docs could hope for!
I know my hubs would be freaking out if it were me with nausea and brain fog. I'm sure he'd be on the phone with docs to get a change in nausea meds, and potentially even a bump of the MRI to a 4 week check up, rather than waiting for the 6 week. As the patient, I'd probably be less concerned…… which is what makes it so much harder on you caregivers. I'm sure he appreciates you more than you can imagine! **hugs**
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- December 14, 2016 at 4:24 pm
Ugh… nausea… Zofran is not particularly effective in everyone, and it is possible to build up a tolerance to it. If his docs know that he is having such a difficult time keeping his evening dose of Taf down, they can prescribe something that might work better for him. His nausea may be coming from any number of things he has going on. Chronic pain, OxyContin, and a potential increase in edema on the gamma radiated lesion could all toss things into turmoil with the stomach as well as the brain fog. I'm sorry to hear that the road hasn't smoothed more quickly for him, but hopefully those upcoming scans will reveal some good news! Finding a balance in meds versus side effects can be a true project!
Less pain in the back, hips and ribs is something to hold onto! Sending positive vibes for bigger tumor reduction than even the docs could hope for!
I know my hubs would be freaking out if it were me with nausea and brain fog. I'm sure he'd be on the phone with docs to get a change in nausea meds, and potentially even a bump of the MRI to a 4 week check up, rather than waiting for the 6 week. As the patient, I'd probably be less concerned…… which is what makes it so much harder on you caregivers. I'm sure he appreciates you more than you can imagine! **hugs**
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- December 14, 2016 at 4:24 pm
Ugh… nausea… Zofran is not particularly effective in everyone, and it is possible to build up a tolerance to it. If his docs know that he is having such a difficult time keeping his evening dose of Taf down, they can prescribe something that might work better for him. His nausea may be coming from any number of things he has going on. Chronic pain, OxyContin, and a potential increase in edema on the gamma radiated lesion could all toss things into turmoil with the stomach as well as the brain fog. I'm sorry to hear that the road hasn't smoothed more quickly for him, but hopefully those upcoming scans will reveal some good news! Finding a balance in meds versus side effects can be a true project!
Less pain in the back, hips and ribs is something to hold onto! Sending positive vibes for bigger tumor reduction than even the docs could hope for!
I know my hubs would be freaking out if it were me with nausea and brain fog. I'm sure he'd be on the phone with docs to get a change in nausea meds, and potentially even a bump of the MRI to a 4 week check up, rather than waiting for the 6 week. As the patient, I'd probably be less concerned…… which is what makes it so much harder on you caregivers. I'm sure he appreciates you more than you can imagine! **hugs**
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- December 16, 2016 at 4:34 pm
So far Odansetron has been working well for me. I have mets in my small intestine that I think have been contributing to the nausea. The real test will come this coming week when I start the chemo portion of TIL treatment.
I dissolve a tablet under my tongue and it will prevent me from throwing up for hours afterward.
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- December 20, 2016 at 8:55 am
Paul
Thanks for your reply. You hav so much going on right now. I pray your TIL works well and kicks this disease's butt. I will keep you and your family in my prayers.
My husband's (Vince) nausea got better on compazime, then worsened along with worsening confusion. Went to ER today and CT showed significant swelling where he had had stereotactic radiation of solitary brain met, with a slight midline shift. LDH is now over 1000, and has a cough. Started on high dose steroids for swelling. Docs to come in this morning to review all the scans and MRI. But suspect failure of BRAF inhibitors after only two weeks. (Got better for two weeks, seemed to plateau for a week then got worse).
Too sick for any trials. Not sure what we have left. Went from a normal, disease free life life six weeks ago to this.
Judy
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- December 20, 2016 at 5:29 pm
Has the brain tumor grown or did they only noticed increased swelling? Swelling can severely compromise the patient’s mental state. Did they see an increase in tumor size anywhere?Annie
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- December 20, 2016 at 6:26 pm
They really don't think it increased. Just swelling an bleeding. Some progression in tumor load in liver ( other scans not uploaded yet) but not dramatic increase. Although hard to tell given already substantial tumor load. Now almost 24 hours high dose steroids and still nauseated/vomiting and confused, though probably less confused by a bit.
Now the debate seems to be craniotomy gives quicker relief of nausea and confusion if from head. But if from liver ( LDH is 1000) though rest of liver functions are okay, it delays starting keytruda in addition to continuing BRAF. Could start keytruda but that will probably increase nausea unless it helps brain.
Oncologist and neurosurgeon are supposed to talk along with other neurosurgeon who did the SRS and come to a recommendation. I don't think I can do it if they just ask us to make a decision. I want him to live but I don't want his last days on earth to be fog of vomit and confusion
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- December 20, 2016 at 6:26 pm
They really don't think it increased. Just swelling an bleeding. Some progression in tumor load in liver ( other scans not uploaded yet) but not dramatic increase. Although hard to tell given already substantial tumor load. Now almost 24 hours high dose steroids and still nauseated/vomiting and confused, though probably less confused by a bit.
Now the debate seems to be craniotomy gives quicker relief of nausea and confusion if from head. But if from liver ( LDH is 1000) though rest of liver functions are okay, it delays starting keytruda in addition to continuing BRAF. Could start keytruda but that will probably increase nausea unless it helps brain.
Oncologist and neurosurgeon are supposed to talk along with other neurosurgeon who did the SRS and come to a recommendation. I don't think I can do it if they just ask us to make a decision. I want him to live but I don't want his last days on earth to be fog of vomit and confusion
-
- December 20, 2016 at 6:26 pm
They really don't think it increased. Just swelling an bleeding. Some progression in tumor load in liver ( other scans not uploaded yet) but not dramatic increase. Although hard to tell given already substantial tumor load. Now almost 24 hours high dose steroids and still nauseated/vomiting and confused, though probably less confused by a bit.
Now the debate seems to be craniotomy gives quicker relief of nausea and confusion if from head. But if from liver ( LDH is 1000) though rest of liver functions are okay, it delays starting keytruda in addition to continuing BRAF. Could start keytruda but that will probably increase nausea unless it helps brain.
Oncologist and neurosurgeon are supposed to talk along with other neurosurgeon who did the SRS and come to a recommendation. I don't think I can do it if they just ask us to make a decision. I want him to live but I don't want his last days on earth to be fog of vomit and confusion
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- December 20, 2016 at 5:29 pm
Has the brain tumor grown or did they only noticed increased swelling? Swelling can severely compromise the patient’s mental state. Did they see an increase in tumor size anywhere?Annie
-
- December 20, 2016 at 5:29 pm
Has the brain tumor grown or did they only noticed increased swelling? Swelling can severely compromise the patient’s mental state. Did they see an increase in tumor size anywhere?Annie
-
- December 20, 2016 at 8:55 am
Paul
Thanks for your reply. You hav so much going on right now. I pray your TIL works well and kicks this disease's butt. I will keep you and your family in my prayers.
My husband's (Vince) nausea got better on compazime, then worsened along with worsening confusion. Went to ER today and CT showed significant swelling where he had had stereotactic radiation of solitary brain met, with a slight midline shift. LDH is now over 1000, and has a cough. Started on high dose steroids for swelling. Docs to come in this morning to review all the scans and MRI. But suspect failure of BRAF inhibitors after only two weeks. (Got better for two weeks, seemed to plateau for a week then got worse).
Too sick for any trials. Not sure what we have left. Went from a normal, disease free life life six weeks ago to this.
Judy
-
- December 20, 2016 at 8:55 am
Paul
Thanks for your reply. You hav so much going on right now. I pray your TIL works well and kicks this disease's butt. I will keep you and your family in my prayers.
My husband's (Vince) nausea got better on compazime, then worsened along with worsening confusion. Went to ER today and CT showed significant swelling where he had had stereotactic radiation of solitary brain met, with a slight midline shift. LDH is now over 1000, and has a cough. Started on high dose steroids for swelling. Docs to come in this morning to review all the scans and MRI. But suspect failure of BRAF inhibitors after only two weeks. (Got better for two weeks, seemed to plateau for a week then got worse).
Too sick for any trials. Not sure what we have left. Went from a normal, disease free life life six weeks ago to this.
Judy
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- December 16, 2016 at 4:34 pm
So far Odansetron has been working well for me. I have mets in my small intestine that I think have been contributing to the nausea. The real test will come this coming week when I start the chemo portion of TIL treatment.
I dissolve a tablet under my tongue and it will prevent me from throwing up for hours afterward.
-
- December 16, 2016 at 4:34 pm
So far Odansetron has been working well for me. I have mets in my small intestine that I think have been contributing to the nausea. The real test will come this coming week when I start the chemo portion of TIL treatment.
I dissolve a tablet under my tongue and it will prevent me from throwing up for hours afterward.
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