› Forums › General Melanoma Community › Last ditch effort – craniotomy? Any other ideas?
- This topic has 27 replies, 9 voices, and was last updated 8 years, 9 months ago by
_Paul_.
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- August 11, 2015 at 6:58 am
Hi all,
Great to just read Artie's amazing description of the NIH visit. I feel like I was there… And, it was just the distraction I needed before posting my Dad's news.
As I've mentioned before, my Dad is 75 and has 5 mets in his brain and 1 in lungs. We discovered this diagnosis less than two months ago, he did WBR for 10 days, weaned himself off steroids, and then had one course of pembro (on medicare as a first-line option!) on July 20th. During the second week of pembro, he started to slow down the eating and then basically stopped eating and drinking around August 1 – due to the swelling of his brain mets on pembro. We got him to the local hospital by the 5th and then they transferred him to the University of Washington yesterday. He is on steroids now – and fairly agitated, not himself, still not eating, etc.
Long story short, we finally met with Dr. Rockhill, the gamma knife/radiation oncology specialist at SCCA this evening and he said that gamma knife is no longer a treatment option for Dad (since it would cause too much swelling). He gave us basically two options – 1) Continue with the steroids, get Dad into a nursing home, and do hospice with a prognosis of maybe 2 months (or less). Since he isn't really responding to the steroids and being in a nursing home would kill him (as a doctor of internal medicine/geriatics for almost 35 years, he just knows way too much about such facilities), we are not considering this a viable option. 2) The other option is a potential consult tomorrow with neurosurgery to determine if Dad's frontal lobe tumor (which is causing most of the cognitive impairment) could come out via a craniotomy. That would still leave smaller tumors elsewhere in the brain for us to deal with later – if he makes it through the surgery and recovers. The doctor today thought this option had a similar 2 month prognosis. I have been reading up on craniotomies via this site – it seems like many of you out there have had them and recovery was rough, but they happen, right? Have you been able to return to systematic/pd-1 treatment after? How often is this used as a last-ditch effort or would the surgeon typically only do this if the survival/improvement chances were very good?
Are there any other treatment options out there which we are missing? Dad is BRAF negative, we can't go on pembro right now with the steroids, he doesn't have an easiliy resectable tumor for TIL, they are saying that his recent weight loss makes him ineligible for clinical trials (since worse performance status). We are down to last ditch efforts – and would like to have a bit more time (a few weeks even!) with Dad as his normal self (not him on steroids nor him with impaired cognition). There is so much which we haven't tried – but are finding that we need to be advocates for him since everyone seems to want to check him into hospice and/or a nursing home.
Would appreciate any and all advice, prayers, etc.
Thanks,
Carrie
- Replies
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- August 11, 2015 at 11:17 am
Carrie, many people here have had a much easier recovery than I with cranis. I'd go for that with a view towards buying some quality time. Of course, I'm 41 and not 75. Something to consider.
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- August 11, 2015 at 4:05 pm
Hi Carrie,
I'd go with the craniotomy and would get 2 opinions for this procedure. – 2 or 3 are always my preference with melanoma.
My Mom (79) had 25 brain mets treated with gamma knife radiation and recently had a reocurance with one brain met. The met was in her prefrontal lobe (on the surface) and was 3.9 or 3.7 mm. She had no cognitive impairment and was in and out of the hospital in about 3 days and back to normal before the end of the week.
She's done unbelievalbly well and really has had no longterm issues with anything, but will start Keytruda soon for about 1 year. – Her first treatment was on 12/9/13 and she is just as active, if not more,bas she was before the diagnosis.
Hope things go well for him.
PS
Watch the mets carefully. Gamma Knife Radiation seems to have better longterm compated to WBRT.
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- August 11, 2015 at 4:05 pm
Hi Carrie,
I'd go with the craniotomy and would get 2 opinions for this procedure. – 2 or 3 are always my preference with melanoma.
My Mom (79) had 25 brain mets treated with gamma knife radiation and recently had a reocurance with one brain met. The met was in her prefrontal lobe (on the surface) and was 3.9 or 3.7 mm. She had no cognitive impairment and was in and out of the hospital in about 3 days and back to normal before the end of the week.
She's done unbelievalbly well and really has had no longterm issues with anything, but will start Keytruda soon for about 1 year. – Her first treatment was on 12/9/13 and she is just as active, if not more,bas she was before the diagnosis.
Hope things go well for him.
PS
Watch the mets carefully. Gamma Knife Radiation seems to have better longterm compated to WBRT.
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- August 11, 2015 at 4:05 pm
Hi Carrie,
I'd go with the craniotomy and would get 2 opinions for this procedure. – 2 or 3 are always my preference with melanoma.
My Mom (79) had 25 brain mets treated with gamma knife radiation and recently had a reocurance with one brain met. The met was in her prefrontal lobe (on the surface) and was 3.9 or 3.7 mm. She had no cognitive impairment and was in and out of the hospital in about 3 days and back to normal before the end of the week.
She's done unbelievalbly well and really has had no longterm issues with anything, but will start Keytruda soon for about 1 year. – Her first treatment was on 12/9/13 and she is just as active, if not more,bas she was before the diagnosis.
Hope things go well for him.
PS
Watch the mets carefully. Gamma Knife Radiation seems to have better longterm compated to WBRT.
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- August 11, 2015 at 5:17 pm
I might be mixing apples and oranges here but my husband is on Nivo and if I remember correctly, the doc said they could give the Nivo with the steroids and it still worked. I also remember one doc explaining that sometime the tumors grow a bit before they shrink, although that was when IPI was still part of the discussion.
Maybe a lower dose of e pembro, some sedation to get through the agitation and give his body some time to work.
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- August 11, 2015 at 5:17 pm
I might be mixing apples and oranges here but my husband is on Nivo and if I remember correctly, the doc said they could give the Nivo with the steroids and it still worked. I also remember one doc explaining that sometime the tumors grow a bit before they shrink, although that was when IPI was still part of the discussion.
Maybe a lower dose of e pembro, some sedation to get through the agitation and give his body some time to work.
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- August 11, 2015 at 5:17 pm
I might be mixing apples and oranges here but my husband is on Nivo and if I remember correctly, the doc said they could give the Nivo with the steroids and it still worked. I also remember one doc explaining that sometime the tumors grow a bit before they shrink, although that was when IPI was still part of the discussion.
Maybe a lower dose of e pembro, some sedation to get through the agitation and give his body some time to work.
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- August 11, 2015 at 7:06 pm
Hello,
im not sure i can offer much help but I just had a craniotomy last week so I thought I'd share my experience.
Im 30 years old and had a tumor about 12 mm removed. It was pretty close to the surface they told me. I stayed over night in the hospital and was able to leave the next morning. It had very little pain, and recovery was very easy for me. I was extremely fatigued but that was it. I've had many surgeries including two lung resections, an eye muscle removed, and various subcutaneous tumors removed. This was the easiest surgery of all of them. I realize your fathers situation is different, and age and overall health may have played a role in my easy recovery. I just wanted to share. I hope for the best for your dad!
Hayden
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- August 11, 2015 at 7:06 pm
Hello,
im not sure i can offer much help but I just had a craniotomy last week so I thought I'd share my experience.
Im 30 years old and had a tumor about 12 mm removed. It was pretty close to the surface they told me. I stayed over night in the hospital and was able to leave the next morning. It had very little pain, and recovery was very easy for me. I was extremely fatigued but that was it. I've had many surgeries including two lung resections, an eye muscle removed, and various subcutaneous tumors removed. This was the easiest surgery of all of them. I realize your fathers situation is different, and age and overall health may have played a role in my easy recovery. I just wanted to share. I hope for the best for your dad!
Hayden
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- August 11, 2015 at 7:06 pm
Hello,
im not sure i can offer much help but I just had a craniotomy last week so I thought I'd share my experience.
Im 30 years old and had a tumor about 12 mm removed. It was pretty close to the surface they told me. I stayed over night in the hospital and was able to leave the next morning. It had very little pain, and recovery was very easy for me. I was extremely fatigued but that was it. I've had many surgeries including two lung resections, an eye muscle removed, and various subcutaneous tumors removed. This was the easiest surgery of all of them. I realize your fathers situation is different, and age and overall health may have played a role in my easy recovery. I just wanted to share. I hope for the best for your dad!
Hayden
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- August 11, 2015 at 10:23 pm
For what it's worth, my then-76-year-old father had a craniotomy with a fairly easy recovery. He was back in his own home living by himself within two weeks. Besides being stage IV, he was in good health before the craniotomy, however. My best wishes to you and your family, whichever choice you make.
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- August 11, 2015 at 10:23 pm
For what it's worth, my then-76-year-old father had a craniotomy with a fairly easy recovery. He was back in his own home living by himself within two weeks. Besides being stage IV, he was in good health before the craniotomy, however. My best wishes to you and your family, whichever choice you make.
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- August 11, 2015 at 11:30 pm
Hi all,
Thank you for the quick responses and ideas today. The brain tumor neurosurgeon at the University of Washington (Dr. Silbergeld) just told us that surgery is not a viable option. Dad has three main mets in his brain – and undergoing three craniotomies would be tough plus removing any one of them would like cause more problems with the others. Needless to say, we are devastated. Based on the earlier post regarding nivo, we have reached out the oncology team to see if there would be a way for Dad to stay on the pembro while still taking steroids. We believe that Dr. Thompson at SCCA (our melanoma specialist) told us that you could be on pembro while taking some amount of low-dose steroids. Need to figure out what that was and if that is still an option. He is getting marinol (medical marijuana) twice per day and did eat a bit of pudding today. So, that's good… But, if pembro isn't an option, we are stuck with palliative care/hospice. Hoping that I won't be asking for hospice advice quite yet but we'll see!
Thank you as always,
Carrie
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- August 11, 2015 at 11:30 pm
Hi all,
Thank you for the quick responses and ideas today. The brain tumor neurosurgeon at the University of Washington (Dr. Silbergeld) just told us that surgery is not a viable option. Dad has three main mets in his brain – and undergoing three craniotomies would be tough plus removing any one of them would like cause more problems with the others. Needless to say, we are devastated. Based on the earlier post regarding nivo, we have reached out the oncology team to see if there would be a way for Dad to stay on the pembro while still taking steroids. We believe that Dr. Thompson at SCCA (our melanoma specialist) told us that you could be on pembro while taking some amount of low-dose steroids. Need to figure out what that was and if that is still an option. He is getting marinol (medical marijuana) twice per day and did eat a bit of pudding today. So, that's good… But, if pembro isn't an option, we are stuck with palliative care/hospice. Hoping that I won't be asking for hospice advice quite yet but we'll see!
Thank you as always,
Carrie
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- August 12, 2015 at 1:01 am
I had a craniotomy when I was 58. It was an easy recovery for me with almost no pain. My tumor was about the size of a chestnut (my doctor's description) and was in my left frontal lobe. A short time later, they "cleaned up" any remaining cells with Stereotactic Radio Surgery. I had tumors in other locations but only one in my brain. It has not returned. I'm now 60.
Wishing you and your father all the best.
Terrie
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- August 12, 2015 at 1:01 am
I had a craniotomy when I was 58. It was an easy recovery for me with almost no pain. My tumor was about the size of a chestnut (my doctor's description) and was in my left frontal lobe. A short time later, they "cleaned up" any remaining cells with Stereotactic Radio Surgery. I had tumors in other locations but only one in my brain. It has not returned. I'm now 60.
Wishing you and your father all the best.
Terrie
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- August 12, 2015 at 1:01 am
I had a craniotomy when I was 58. It was an easy recovery for me with almost no pain. My tumor was about the size of a chestnut (my doctor's description) and was in my left frontal lobe. A short time later, they "cleaned up" any remaining cells with Stereotactic Radio Surgery. I had tumors in other locations but only one in my brain. It has not returned. I'm now 60.
Wishing you and your father all the best.
Terrie
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- August 12, 2015 at 1:18 am
Hi Carrie,
Dr. Thompson is my oncologist too and I am on Keytruda and steroids, but nothing as strong as dexomethasone. Steroids suppress the immune system, so there is concern that it would be counteracting immunotherapy. But Dr. Thompson has told me the same, that low doses are Ok.
Also, for what it's worth, in my humble opinion you are in great hands with Dr. Thompson. I am praying for a miracle for your Dad.
– Paul
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- August 12, 2015 at 1:18 am
Hi Carrie,
Dr. Thompson is my oncologist too and I am on Keytruda and steroids, but nothing as strong as dexomethasone. Steroids suppress the immune system, so there is concern that it would be counteracting immunotherapy. But Dr. Thompson has told me the same, that low doses are Ok.
Also, for what it's worth, in my humble opinion you are in great hands with Dr. Thompson. I am praying for a miracle for your Dad.
– Paul
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- August 12, 2015 at 1:18 am
Hi Carrie,
Dr. Thompson is my oncologist too and I am on Keytruda and steroids, but nothing as strong as dexomethasone. Steroids suppress the immune system, so there is concern that it would be counteracting immunotherapy. But Dr. Thompson has told me the same, that low doses are Ok.
Also, for what it's worth, in my humble opinion you are in great hands with Dr. Thompson. I am praying for a miracle for your Dad.
– Paul
-
- August 11, 2015 at 11:30 pm
Hi all,
Thank you for the quick responses and ideas today. The brain tumor neurosurgeon at the University of Washington (Dr. Silbergeld) just told us that surgery is not a viable option. Dad has three main mets in his brain – and undergoing three craniotomies would be tough plus removing any one of them would like cause more problems with the others. Needless to say, we are devastated. Based on the earlier post regarding nivo, we have reached out the oncology team to see if there would be a way for Dad to stay on the pembro while still taking steroids. We believe that Dr. Thompson at SCCA (our melanoma specialist) told us that you could be on pembro while taking some amount of low-dose steroids. Need to figure out what that was and if that is still an option. He is getting marinol (medical marijuana) twice per day and did eat a bit of pudding today. So, that's good… But, if pembro isn't an option, we are stuck with palliative care/hospice. Hoping that I won't be asking for hospice advice quite yet but we'll see!
Thank you as always,
Carrie
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- August 11, 2015 at 10:23 pm
For what it's worth, my then-76-year-old father had a craniotomy with a fairly easy recovery. He was back in his own home living by himself within two weeks. Besides being stage IV, he was in good health before the craniotomy, however. My best wishes to you and your family, whichever choice you make.
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