› Forums › General Melanoma Community › Brain met swelling on Keytruda – need help!
- This topic has 21 replies, 5 voices, and was last updated 10 years, 3 months ago by
marshajay.
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- August 9, 2015 at 8:39 am
Hi all,
My Dad just started Keytruda for his Stage 4 melanoma (with multiple lesions in brain and one in lungs; after doing WBR in June) but he has had significant swelling of one of the brain tumors which is now causing cognitive impairment. He basically stopped eating/drinking last weekend at home, then we got paramedics to get him to hospital on Wednesday, he is on 8 mg of steroids twice per day as of Wed. night, and then now he is resisting eating again. He is getting plenty of fluids – but we have a big meeting with the gamma knife/surgery specialist in Seattle this coming Wednesday and so are trying to figure out how to get him healthy again (or otherwise that doctor won't see him and/or won't work on him). His largest brain tumor is located in his frontal lobe – and hasn't gotten bigger over the last two weeks but does have swelling around it. Has anyone seen this kind of brain met swelling while on Keytruda? Did the effects of it last long? Besides increasing dosage of the steroids, what other options do we have? The local hospital is pushing to put my Dad in hospice/a nursing home – but we haven't even tried a full course of Keytruda yet and only discovered his cancer in mid-June. There must be other options! Any advice on this would be appreciated! We are not ready to give in to this disease!!!
Thanks,
Carrie
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- August 9, 2015 at 2:05 pm
I'd get to a top tier hospital and have the tumor removed via SRS or crani. You'll see from my recent posts that I did just that within the past 2 weeks.
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- August 9, 2015 at 3:46 pm
Wow Mat. 2 craniotomies in the past 2 weeks and you are already reaching out to help folks. You are one heck of a guy.
Artie
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- August 9, 2015 at 3:46 pm
Wow Mat. 2 craniotomies in the past 2 weeks and you are already reaching out to help folks. You are one heck of a guy.
Artie
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- August 9, 2015 at 3:46 pm
Wow Mat. 2 craniotomies in the past 2 weeks and you are already reaching out to help folks. You are one heck of a guy.
Artie
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- August 9, 2015 at 3:56 pm
He has to want to eat. The issues going on in his brain might be affecting his thinking. If he has something he's always really liked to eat that might help. Maybe even the smell might get him motivate. Maybe something from his childhood like a fresh baked cookie or something. Last winter the radiation knocked me down so much and I was having throat issues so I couldn't swallow solid foods. Once that got better though I went for pizza. My favorite food that I've avoided from my diet. It helped as comfort and nutrition. Also surprisingly fresh made fajitas was good. Maybe he has something that would tempt him to eat. Otherwise I think they can give nutrition via iv but from what I understand it isn't as good and they tend to only do that temporarily but I could be wrong on that.
Artie
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- August 9, 2015 at 3:56 pm
He has to want to eat. The issues going on in his brain might be affecting his thinking. If he has something he's always really liked to eat that might help. Maybe even the smell might get him motivate. Maybe something from his childhood like a fresh baked cookie or something. Last winter the radiation knocked me down so much and I was having throat issues so I couldn't swallow solid foods. Once that got better though I went for pizza. My favorite food that I've avoided from my diet. It helped as comfort and nutrition. Also surprisingly fresh made fajitas was good. Maybe he has something that would tempt him to eat. Otherwise I think they can give nutrition via iv but from what I understand it isn't as good and they tend to only do that temporarily but I could be wrong on that.
Artie
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- August 9, 2015 at 3:56 pm
He has to want to eat. The issues going on in his brain might be affecting his thinking. If he has something he's always really liked to eat that might help. Maybe even the smell might get him motivate. Maybe something from his childhood like a fresh baked cookie or something. Last winter the radiation knocked me down so much and I was having throat issues so I couldn't swallow solid foods. Once that got better though I went for pizza. My favorite food that I've avoided from my diet. It helped as comfort and nutrition. Also surprisingly fresh made fajitas was good. Maybe he has something that would tempt him to eat. Otherwise I think they can give nutrition via iv but from what I understand it isn't as good and they tend to only do that temporarily but I could be wrong on that.
Artie
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- August 9, 2015 at 7:41 pm
Is the steroid he's on Decadron? That seems to be the one usually used for brain swelling. I've been on that several times.
I've heard some people here recommend protein shakes to help deal with lack of appetite.
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- August 10, 2015 at 7:30 am
Thank you, all! Artie and Mat, I can't believe that you are both online but I am so appreciative of your advice and expertise. Dad is on dexamethasone – and now at 8 mg for three times per day. After reading your posts this morning, we did get up the nerve to push to get him moved out of our semi-rural hospital to the University of Washington – and fortunately the doctor seeing him at our local hospital agreed. He is now at the UW and we explore our options tomorrow. He is completely not himself, very agitated from the steroids, and so we are hoping for a few non-hospice options tomorrow.
Thank you again for all!
Carrie
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- August 10, 2015 at 7:30 am
Thank you, all! Artie and Mat, I can't believe that you are both online but I am so appreciative of your advice and expertise. Dad is on dexamethasone – and now at 8 mg for three times per day. After reading your posts this morning, we did get up the nerve to push to get him moved out of our semi-rural hospital to the University of Washington – and fortunately the doctor seeing him at our local hospital agreed. He is now at the UW and we explore our options tomorrow. He is completely not himself, very agitated from the steroids, and so we are hoping for a few non-hospice options tomorrow.
Thank you again for all!
Carrie
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- August 10, 2015 at 7:30 am
Thank you, all! Artie and Mat, I can't believe that you are both online but I am so appreciative of your advice and expertise. Dad is on dexamethasone – and now at 8 mg for three times per day. After reading your posts this morning, we did get up the nerve to push to get him moved out of our semi-rural hospital to the University of Washington – and fortunately the doctor seeing him at our local hospital agreed. He is now at the UW and we explore our options tomorrow. He is completely not himself, very agitated from the steroids, and so we are hoping for a few non-hospice options tomorrow.
Thank you again for all!
Carrie
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- August 17, 2015 at 3:04 am
My Dad (87) experienced swelling around his brain tumor after 3 rounds of Opdivo. The Opdivo seemed to be working on shrinking the tumors in his abdomen but we are pretty sure caused the swelling around the brain tumor that was previously treated with radiation.
We suspended the Opdivo and started steroids but he's had the typical side effects of mood swings and agitation. The doctors at Northwestern suggested trying Avasitn as an alternative to reduce the swelling. (Used successfully with some forms of brain cancer) If it works, the plan is to suspend the steroids and try to resume the immunotherapy but we haven't found any research on Avastin being used in conjunction with Opdivo. Good luck to you with your dad.
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- August 17, 2015 at 3:04 am
My Dad (87) experienced swelling around his brain tumor after 3 rounds of Opdivo. The Opdivo seemed to be working on shrinking the tumors in his abdomen but we are pretty sure caused the swelling around the brain tumor that was previously treated with radiation.
We suspended the Opdivo and started steroids but he's had the typical side effects of mood swings and agitation. The doctors at Northwestern suggested trying Avasitn as an alternative to reduce the swelling. (Used successfully with some forms of brain cancer) If it works, the plan is to suspend the steroids and try to resume the immunotherapy but we haven't found any research on Avastin being used in conjunction with Opdivo. Good luck to you with your dad.
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- August 17, 2015 at 3:04 am
My Dad (87) experienced swelling around his brain tumor after 3 rounds of Opdivo. The Opdivo seemed to be working on shrinking the tumors in his abdomen but we are pretty sure caused the swelling around the brain tumor that was previously treated with radiation.
We suspended the Opdivo and started steroids but he's had the typical side effects of mood swings and agitation. The doctors at Northwestern suggested trying Avasitn as an alternative to reduce the swelling. (Used successfully with some forms of brain cancer) If it works, the plan is to suspend the steroids and try to resume the immunotherapy but we haven't found any research on Avastin being used in conjunction with Opdivo. Good luck to you with your dad.
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