› Forums › General Melanoma Community › Treated Brain Met Bleeding – Your Experience?
- This topic has 18 replies, 3 voices, and was last updated 8 years, 7 months ago by
Patina.
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- October 8, 2015 at 3:00 am
My Mom, who is has Stage IV Melanoma (11/2013) and has been treated for 28 brain tumors, went for her regular followup and was told that one tumor had a bit of bleeding around it. – I didn't go with her to her appointment this time and don't have all the information on this appointment. She was headed to Las Vegas after her appointment for a little vacation.
She was told to come back in 2 weeks for a re-exam and that she could not drive right now because of the bleeding.
I can't find a lot of information on bleeding around the brain tumor after gamma knife radiation and am curious of what others may have been told if this has occurred. She said that her brain might reabsorb the blood, but I am worried that they've asked her to come back after 2 weeks when she usually see's the doctor every 2 months.
Anyone experience anything like this or know anything about bleeding around brain tumors?
Thanks!
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- October 9, 2015 at 2:12 pm
When my husband, Pete, had bleeding in his brain mets they increased his Steroid medication (Dexamethasone) and monitored him. He also had previous gamma knife surgery, later followed by WBR. We were told that by their nature, Melanoma tumours are vascular and tend to bleed. I am surprised that your mother is permitted to drive—when Pete was diagnosed with his first brain tumour his licence was removed as a precaution in case he had a seizure. He never was able to regain his driver's license.
Yasmin
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- October 9, 2015 at 2:12 pm
When my husband, Pete, had bleeding in his brain mets they increased his Steroid medication (Dexamethasone) and monitored him. He also had previous gamma knife surgery, later followed by WBR. We were told that by their nature, Melanoma tumours are vascular and tend to bleed. I am surprised that your mother is permitted to drive—when Pete was diagnosed with his first brain tumour his licence was removed as a precaution in case he had a seizure. He never was able to regain his driver's license.
Yasmin
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- October 9, 2015 at 10:40 pm
There was a long period of time where she could not drive after treatment. She never had a seizure but did take Keppra to try and avoid them. Once she was taken off Keppra for a while and the scans came back fine her doctor said she could drive again.
He filled out some paperwork for the DMV, she provided authorization for the DMV to get medical records, took a written test, did a interview and a driving test. She failed the first written test. – She didn't study. – Aced it the second time and everything else.
You might talk to your husbands neuro-oncologist about this. Maybe he can start driving if he doesn't have any cognitive issues and has not had a seizure.
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- October 9, 2015 at 10:40 pm
There was a long period of time where she could not drive after treatment. She never had a seizure but did take Keppra to try and avoid them. Once she was taken off Keppra for a while and the scans came back fine her doctor said she could drive again.
He filled out some paperwork for the DMV, she provided authorization for the DMV to get medical records, took a written test, did a interview and a driving test. She failed the first written test. – She didn't study. – Aced it the second time and everything else.
You might talk to your husbands neuro-oncologist about this. Maybe he can start driving if he doesn't have any cognitive issues and has not had a seizure.
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- October 9, 2015 at 10:40 pm
There was a long period of time where she could not drive after treatment. She never had a seizure but did take Keppra to try and avoid them. Once she was taken off Keppra for a while and the scans came back fine her doctor said she could drive again.
He filled out some paperwork for the DMV, she provided authorization for the DMV to get medical records, took a written test, did a interview and a driving test. She failed the first written test. – She didn't study. – Aced it the second time and everything else.
You might talk to your husbands neuro-oncologist about this. Maybe he can start driving if he doesn't have any cognitive issues and has not had a seizure.
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- October 9, 2015 at 2:12 pm
When my husband, Pete, had bleeding in his brain mets they increased his Steroid medication (Dexamethasone) and monitored him. He also had previous gamma knife surgery, later followed by WBR. We were told that by their nature, Melanoma tumours are vascular and tend to bleed. I am surprised that your mother is permitted to drive—when Pete was diagnosed with his first brain tumour his licence was removed as a precaution in case he had a seizure. He never was able to regain his driver's license.
Yasmin
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- October 10, 2015 at 3:52 pm
Patina, is the 2-week re-exam for them to run another MRI? If that is the case maybe they're not sure what they're seeing in that area so far.
I don't know if my experience has any bearing on that of anybody else. Probably not much as each tumor is its own individual case. In my case there was a tumor that was bleeding (slowly I guess) for about 5 months after it was treated with CyberKnife. My radiation oncologist wanted to make sure I wasn't taking any herbal supplements which could thin blood and make the area more prone to bleed. Eventually the tumor in that location grew back and was resected by craniotomy. FWIW I never got the feeling from the original radiation oncologist that they had confidence in the treatment they gave me. To the contrary in retrospect when I think about what they said. Anyhow — separately another resection bed/cavity still shows up as coated with hemosiderin multiple years later — hemosiderin is broken-down blood as I understand it. That one has never recurred.
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- October 11, 2015 at 12:01 am
Hi,
The re-exam is a CT scan. I don't think they think this is cancer, just bleeding.
They are not worried about any medications. My Mom is really healthy, except for this and doesn't have any other issues or take anything except things like vitamin D.
The first radiologist oncologist we saw wasn't great. (A big reason I recommend getting 2nd opinions.) He missed 1 tumor entirely and I have no confidence in what he did. Her current radiologist oncologist (Dr. Chang @ USC) is simply Amazing as is her neuro-oncologist (Dr. Wagle @ USC). – I don't know if the tumor that they are watching was something treated during the first treatment or not. The reoccurence she had was from a tumor teated in the first gamma knife radiation treatment from December of 2013. – The other surgery was done in April of 2014 and we've seen no issues then.
I'll have to look up hemosiderin and see if it is applicable here.
Another commentor said their husband never drove again. Were you able to drive again too? And did you go through the DMV? I've heard a few horror stories about people having strokes, recovering and then years later finding that they had to be re-certified by the DMV AFTER a accident. A few lost everything. Really sad!
Thanks for the information.
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- October 11, 2015 at 12:01 am
Hi,
The re-exam is a CT scan. I don't think they think this is cancer, just bleeding.
They are not worried about any medications. My Mom is really healthy, except for this and doesn't have any other issues or take anything except things like vitamin D.
The first radiologist oncologist we saw wasn't great. (A big reason I recommend getting 2nd opinions.) He missed 1 tumor entirely and I have no confidence in what he did. Her current radiologist oncologist (Dr. Chang @ USC) is simply Amazing as is her neuro-oncologist (Dr. Wagle @ USC). – I don't know if the tumor that they are watching was something treated during the first treatment or not. The reoccurence she had was from a tumor teated in the first gamma knife radiation treatment from December of 2013. – The other surgery was done in April of 2014 and we've seen no issues then.
I'll have to look up hemosiderin and see if it is applicable here.
Another commentor said their husband never drove again. Were you able to drive again too? And did you go through the DMV? I've heard a few horror stories about people having strokes, recovering and then years later finding that they had to be re-certified by the DMV AFTER a accident. A few lost everything. Really sad!
Thanks for the information.
-
- October 11, 2015 at 12:01 am
Hi,
The re-exam is a CT scan. I don't think they think this is cancer, just bleeding.
They are not worried about any medications. My Mom is really healthy, except for this and doesn't have any other issues or take anything except things like vitamin D.
The first radiologist oncologist we saw wasn't great. (A big reason I recommend getting 2nd opinions.) He missed 1 tumor entirely and I have no confidence in what he did. Her current radiologist oncologist (Dr. Chang @ USC) is simply Amazing as is her neuro-oncologist (Dr. Wagle @ USC). – I don't know if the tumor that they are watching was something treated during the first treatment or not. The reoccurence she had was from a tumor teated in the first gamma knife radiation treatment from December of 2013. – The other surgery was done in April of 2014 and we've seen no issues then.
I'll have to look up hemosiderin and see if it is applicable here.
Another commentor said their husband never drove again. Were you able to drive again too? And did you go through the DMV? I've heard a few horror stories about people having strokes, recovering and then years later finding that they had to be re-certified by the DMV AFTER a accident. A few lost everything. Really sad!
Thanks for the information.
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- October 11, 2015 at 6:58 am
The second time around (2nd surgery, 2nd SRS), my neurosurgeon advised me not drive for awhile. I forget now, either 3 or 6 months I believe. After that he OK'd me to drive again. He did say to take it easy, maybe not drive in traffic jams like during rush hour. For my regualar 4-year (?) license renewal, I reported a health issue related to all this to DMV. They had me do a driving test again (not the written) which went fine.
I think I have a similar level of confidence in UCSF as it sounds like you do with USC.
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- October 11, 2015 at 6:58 am
The second time around (2nd surgery, 2nd SRS), my neurosurgeon advised me not drive for awhile. I forget now, either 3 or 6 months I believe. After that he OK'd me to drive again. He did say to take it easy, maybe not drive in traffic jams like during rush hour. For my regualar 4-year (?) license renewal, I reported a health issue related to all this to DMV. They had me do a driving test again (not the written) which went fine.
I think I have a similar level of confidence in UCSF as it sounds like you do with USC.
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- October 17, 2015 at 6:07 am
Yes, her doctors are amazing.
FYI – Your doctor should have filled out the medical paperwork for you for the DMV years ago. Some patients from a stroke rehabilitation center in town were not covered by their auto insurance carriers after they were in accidents years later. Doctors said they could drive, but no re-evaluation occurred and one was required. One person lost everything and if the doctor had done as required by law it could have been avoided. Others were not covered when they had the accident.
Stroke, surgery or SRS an evaluation is really required by the DMV for liability issues. – Pass the information along. I don't want to have this happened to someone else.
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- October 17, 2015 at 6:07 am
Yes, her doctors are amazing.
FYI – Your doctor should have filled out the medical paperwork for you for the DMV years ago. Some patients from a stroke rehabilitation center in town were not covered by their auto insurance carriers after they were in accidents years later. Doctors said they could drive, but no re-evaluation occurred and one was required. One person lost everything and if the doctor had done as required by law it could have been avoided. Others were not covered when they had the accident.
Stroke, surgery or SRS an evaluation is really required by the DMV for liability issues. – Pass the information along. I don't want to have this happened to someone else.
-
- October 17, 2015 at 6:07 am
Yes, her doctors are amazing.
FYI – Your doctor should have filled out the medical paperwork for you for the DMV years ago. Some patients from a stroke rehabilitation center in town were not covered by their auto insurance carriers after they were in accidents years later. Doctors said they could drive, but no re-evaluation occurred and one was required. One person lost everything and if the doctor had done as required by law it could have been avoided. Others were not covered when they had the accident.
Stroke, surgery or SRS an evaluation is really required by the DMV for liability issues. – Pass the information along. I don't want to have this happened to someone else.
-
- October 11, 2015 at 6:58 am
The second time around (2nd surgery, 2nd SRS), my neurosurgeon advised me not drive for awhile. I forget now, either 3 or 6 months I believe. After that he OK'd me to drive again. He did say to take it easy, maybe not drive in traffic jams like during rush hour. For my regualar 4-year (?) license renewal, I reported a health issue related to all this to DMV. They had me do a driving test again (not the written) which went fine.
I think I have a similar level of confidence in UCSF as it sounds like you do with USC.
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- October 10, 2015 at 3:52 pm
Patina, is the 2-week re-exam for them to run another MRI? If that is the case maybe they're not sure what they're seeing in that area so far.
I don't know if my experience has any bearing on that of anybody else. Probably not much as each tumor is its own individual case. In my case there was a tumor that was bleeding (slowly I guess) for about 5 months after it was treated with CyberKnife. My radiation oncologist wanted to make sure I wasn't taking any herbal supplements which could thin blood and make the area more prone to bleed. Eventually the tumor in that location grew back and was resected by craniotomy. FWIW I never got the feeling from the original radiation oncologist that they had confidence in the treatment they gave me. To the contrary in retrospect when I think about what they said. Anyhow — separately another resection bed/cavity still shows up as coated with hemosiderin multiple years later — hemosiderin is broken-down blood as I understand it. That one has never recurred.
-
- October 10, 2015 at 3:52 pm
Patina, is the 2-week re-exam for them to run another MRI? If that is the case maybe they're not sure what they're seeing in that area so far.
I don't know if my experience has any bearing on that of anybody else. Probably not much as each tumor is its own individual case. In my case there was a tumor that was bleeding (slowly I guess) for about 5 months after it was treated with CyberKnife. My radiation oncologist wanted to make sure I wasn't taking any herbal supplements which could thin blood and make the area more prone to bleed. Eventually the tumor in that location grew back and was resected by craniotomy. FWIW I never got the feeling from the original radiation oncologist that they had confidence in the treatment they gave me. To the contrary in retrospect when I think about what they said. Anyhow — separately another resection bed/cavity still shows up as coated with hemosiderin multiple years later — hemosiderin is broken-down blood as I understand it. That one has never recurred.
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