› Forums › General Melanoma Community › The good and then the Brain MRi
- This topic has 24 replies, 4 voices, and was last updated 7 years, 10 months ago by
kylez.
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- June 3, 2016 at 5:32 am
Hello!!
Feeling a little overwhelemed byt the melanoma beast… My mom was going to start a trial next week for opdivo and epacadostat.. Its been 5 monhts since the orginal find of abdnormal lymph… long journey of scans, second opinion and decisions.. With decision finally made for the trial the Brain MRI was completed.. they found 5 small areas on brain and apparently one in tricky spot. They will not proceed with trial until this is taken care of.. I guess they are recommendng Gama.. all so confusing.. and then you wonder does the current place have a good department to handle this.. or do we need to Vet that aspect as well…. Anyone know about UCSF in terms of treating Brain Mets?
On the bright side.. another pet scan was done (2-3 months) from original and showed no progression. Actually the lymph gland that has now been biopesied twice had reduced in size. Maybe due to biopsies themselves.. not sure but thats something!!
Thanks so much for all the infomation on this board. i did not know much about the Brain Mets version shall we call it of Melanoma and it was very helpful to read threw and understand what was talked about today.
If anyone has words of wisdom on this Gama process would be much appreciated.. how to go about it.. and preparing the best team… and how serious are the risks.
Best to you all!!! Thanks so much for all the positive support and knowledge.
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- June 3, 2016 at 5:00 pm
Sorry to hear they found some small mets in her brain, frustrating to have to hold off on starting a trial I am sure.
My thinking, if I were in her shoes and my next brain MRI showed mets and I needed gamma knife as well, I would feel very confident in the UCSF team because they have a lot of advanced melanoma patients, and since the brain is one area that is quite common for melanoma to metastasize to, I am sure they've done more than their share of gamma knife procedures.
Here is their site about it that lists the physicians and gives a lot of good info about the procedure:
https://www.ucsfhealth.org/treatments/gamma_knife/
From what you'll read on there, they've been doing gamma knife for 25 years and have done thousands of them. They've gotten better more precise machines over the years and are able to treat mets in sensitive spots as well.
Sending good thoughts your way, hope these little brain buggers get taken care of quickly and she can move on to the trial.
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- June 3, 2016 at 5:00 pm
Sorry to hear they found some small mets in her brain, frustrating to have to hold off on starting a trial I am sure.
My thinking, if I were in her shoes and my next brain MRI showed mets and I needed gamma knife as well, I would feel very confident in the UCSF team because they have a lot of advanced melanoma patients, and since the brain is one area that is quite common for melanoma to metastasize to, I am sure they've done more than their share of gamma knife procedures.
Here is their site about it that lists the physicians and gives a lot of good info about the procedure:
https://www.ucsfhealth.org/treatments/gamma_knife/
From what you'll read on there, they've been doing gamma knife for 25 years and have done thousands of them. They've gotten better more precise machines over the years and are able to treat mets in sensitive spots as well.
Sending good thoughts your way, hope these little brain buggers get taken care of quickly and she can move on to the trial.
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- June 3, 2016 at 5:00 pm
Sorry to hear they found some small mets in her brain, frustrating to have to hold off on starting a trial I am sure.
My thinking, if I were in her shoes and my next brain MRI showed mets and I needed gamma knife as well, I would feel very confident in the UCSF team because they have a lot of advanced melanoma patients, and since the brain is one area that is quite common for melanoma to metastasize to, I am sure they've done more than their share of gamma knife procedures.
Here is their site about it that lists the physicians and gives a lot of good info about the procedure:
https://www.ucsfhealth.org/treatments/gamma_knife/
From what you'll read on there, they've been doing gamma knife for 25 years and have done thousands of them. They've gotten better more precise machines over the years and are able to treat mets in sensitive spots as well.
Sending good thoughts your way, hope these little brain buggers get taken care of quickly and she can move on to the trial.
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- June 3, 2016 at 7:55 pm
Sorry to hear that you are at this point now. Was it your Mom's decision to wait 5 months or the doctors? I don't know of anyone who would recommend a wait this long and would be hesitant to move forward with the doctor if it was his or her recommendation to wait since about 40% of melanoma patients at an advanced stage end up with brain mets. It is just a really big risk to take and he or she should have at least mentioned this to her… I'd also like to know if the oncologist is a melanoma specialist or not. This makes a difference. I'd only recommend a melanoma specialist not just any oncologist.
My Mom was diagnosed with brain mets after an unfortunate series of misdiagnosis in 2013. She had gamma knife radiation and Yervoy/ipi 4 days after the procedure. This short time frame between the treatment and the infusion was very good for her. (She was BRAF + too.) – Ask her doctors about this.
There does seem to be good results with Gamma knife radiation and Odivo/nivo, but I don't know when they started the treatment and personally I would not wait the extra 30 days or so you will need to likely wait to confirm that the SRS worked to then start the trial. I would recommend getting the SRS and starting the infusions ASAP.
With the above said, the day of my Mom's gamma knife radiation surgery we were told that a brain met identified by a radiologist was instead a blood vessel. It was not a blood vessel and even at the 1 month followup the radiologist who did the first gamma knife ration surgery insisted it was a blood vessel even though a second radiologist who read the MRI identified it as a brain met…. – That one brain met was left to help seed her brain with more brain mets… – We thought the doctor was fine, but now I know that you always need to ask questions and get a second opinion even after what you think is successful treatment. I am sure my Mom is alive today because we did this more than once between diagnosis and treatments…
My Mom ended up having 17 brain mets treated about 4 months after the first 8 were treated. This time we went to a NEW radiologist (Dr. Eric Chang at USC in Los Angeles) who I completely trust. One of the things I like the most is that the team that Dr. Chang has is not just his extensive experience with gamma knife radiation but because he is affiliated with Keck School of Medicine at USC. This means that not only are the specialists looking at the MRIs, but residents and students look at the MRIs too before procedures. – A lot more eyes to look at the same MRIs, in my opinion would reduce the likelihood of "missed" brain mets…
If your Mom's doctor hasn't mentioned that she should not be driving at all and she should be tested by the DMV before she starts driving again if her doctor allows it.
Good luck and never be afraid to ask questions or go elsewhere if you have any concerns.
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- June 4, 2016 at 2:50 am
Thanks so much for the information! I actually read about your mom when I was on here looking for info. Its a inspiring story!
No one recommended that she wait that long.. it was just a weird way that we went about finding out about Stage 4 The process of Pet Scans, MRIs and additional bipsies and then preppring for trial and it just took that long.. though for around 2 months we did not know for sure if it was stage 4. My mom was working full time and combined with waiting for appointment times and insurance approvals…time has been ticking.. She has seen 2 Melanoma specialists…
I agree we want to to radiation and infusion close together. I am no sure what time line would be but think it would be closer to 14 days if she sticks with the trial.. though I have been thinking maybe she should just do the radiation and then keytruda .
Regarding driving.. is that for all Gama procedures? Heva not heard this?
Do you reside in So Cal or travel there?
Thanks again!!!
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- June 4, 2016 at 2:50 am
Thanks so much for the information! I actually read about your mom when I was on here looking for info. Its a inspiring story!
No one recommended that she wait that long.. it was just a weird way that we went about finding out about Stage 4 The process of Pet Scans, MRIs and additional bipsies and then preppring for trial and it just took that long.. though for around 2 months we did not know for sure if it was stage 4. My mom was working full time and combined with waiting for appointment times and insurance approvals…time has been ticking.. She has seen 2 Melanoma specialists…
I agree we want to to radiation and infusion close together. I am no sure what time line would be but think it would be closer to 14 days if she sticks with the trial.. though I have been thinking maybe she should just do the radiation and then keytruda .
Regarding driving.. is that for all Gama procedures? Heva not heard this?
Do you reside in So Cal or travel there?
Thanks again!!!
-
- June 4, 2016 at 2:50 am
Thanks so much for the information! I actually read about your mom when I was on here looking for info. Its a inspiring story!
No one recommended that she wait that long.. it was just a weird way that we went about finding out about Stage 4 The process of Pet Scans, MRIs and additional bipsies and then preppring for trial and it just took that long.. though for around 2 months we did not know for sure if it was stage 4. My mom was working full time and combined with waiting for appointment times and insurance approvals…time has been ticking.. She has seen 2 Melanoma specialists…
I agree we want to to radiation and infusion close together. I am no sure what time line would be but think it would be closer to 14 days if she sticks with the trial.. though I have been thinking maybe she should just do the radiation and then keytruda .
Regarding driving.. is that for all Gama procedures? Heva not heard this?
Do you reside in So Cal or travel there?
Thanks again!!!
-
- June 3, 2016 at 7:55 pm
Sorry to hear that you are at this point now. Was it your Mom's decision to wait 5 months or the doctors? I don't know of anyone who would recommend a wait this long and would be hesitant to move forward with the doctor if it was his or her recommendation to wait since about 40% of melanoma patients at an advanced stage end up with brain mets. It is just a really big risk to take and he or she should have at least mentioned this to her… I'd also like to know if the oncologist is a melanoma specialist or not. This makes a difference. I'd only recommend a melanoma specialist not just any oncologist.
My Mom was diagnosed with brain mets after an unfortunate series of misdiagnosis in 2013. She had gamma knife radiation and Yervoy/ipi 4 days after the procedure. This short time frame between the treatment and the infusion was very good for her. (She was BRAF + too.) – Ask her doctors about this.
There does seem to be good results with Gamma knife radiation and Odivo/nivo, but I don't know when they started the treatment and personally I would not wait the extra 30 days or so you will need to likely wait to confirm that the SRS worked to then start the trial. I would recommend getting the SRS and starting the infusions ASAP.
With the above said, the day of my Mom's gamma knife radiation surgery we were told that a brain met identified by a radiologist was instead a blood vessel. It was not a blood vessel and even at the 1 month followup the radiologist who did the first gamma knife ration surgery insisted it was a blood vessel even though a second radiologist who read the MRI identified it as a brain met…. – That one brain met was left to help seed her brain with more brain mets… – We thought the doctor was fine, but now I know that you always need to ask questions and get a second opinion even after what you think is successful treatment. I am sure my Mom is alive today because we did this more than once between diagnosis and treatments…
My Mom ended up having 17 brain mets treated about 4 months after the first 8 were treated. This time we went to a NEW radiologist (Dr. Eric Chang at USC in Los Angeles) who I completely trust. One of the things I like the most is that the team that Dr. Chang has is not just his extensive experience with gamma knife radiation but because he is affiliated with Keck School of Medicine at USC. This means that not only are the specialists looking at the MRIs, but residents and students look at the MRIs too before procedures. – A lot more eyes to look at the same MRIs, in my opinion would reduce the likelihood of "missed" brain mets…
If your Mom's doctor hasn't mentioned that she should not be driving at all and she should be tested by the DMV before she starts driving again if her doctor allows it.
Good luck and never be afraid to ask questions or go elsewhere if you have any concerns.
-
- June 3, 2016 at 7:55 pm
Sorry to hear that you are at this point now. Was it your Mom's decision to wait 5 months or the doctors? I don't know of anyone who would recommend a wait this long and would be hesitant to move forward with the doctor if it was his or her recommendation to wait since about 40% of melanoma patients at an advanced stage end up with brain mets. It is just a really big risk to take and he or she should have at least mentioned this to her… I'd also like to know if the oncologist is a melanoma specialist or not. This makes a difference. I'd only recommend a melanoma specialist not just any oncologist.
My Mom was diagnosed with brain mets after an unfortunate series of misdiagnosis in 2013. She had gamma knife radiation and Yervoy/ipi 4 days after the procedure. This short time frame between the treatment and the infusion was very good for her. (She was BRAF + too.) – Ask her doctors about this.
There does seem to be good results with Gamma knife radiation and Odivo/nivo, but I don't know when they started the treatment and personally I would not wait the extra 30 days or so you will need to likely wait to confirm that the SRS worked to then start the trial. I would recommend getting the SRS and starting the infusions ASAP.
With the above said, the day of my Mom's gamma knife radiation surgery we were told that a brain met identified by a radiologist was instead a blood vessel. It was not a blood vessel and even at the 1 month followup the radiologist who did the first gamma knife ration surgery insisted it was a blood vessel even though a second radiologist who read the MRI identified it as a brain met…. – That one brain met was left to help seed her brain with more brain mets… – We thought the doctor was fine, but now I know that you always need to ask questions and get a second opinion even after what you think is successful treatment. I am sure my Mom is alive today because we did this more than once between diagnosis and treatments…
My Mom ended up having 17 brain mets treated about 4 months after the first 8 were treated. This time we went to a NEW radiologist (Dr. Eric Chang at USC in Los Angeles) who I completely trust. One of the things I like the most is that the team that Dr. Chang has is not just his extensive experience with gamma knife radiation but because he is affiliated with Keck School of Medicine at USC. This means that not only are the specialists looking at the MRIs, but residents and students look at the MRIs too before procedures. – A lot more eyes to look at the same MRIs, in my opinion would reduce the likelihood of "missed" brain mets…
If your Mom's doctor hasn't mentioned that she should not be driving at all and she should be tested by the DMV before she starts driving again if her doctor allows it.
Good luck and never be afraid to ask questions or go elsewhere if you have any concerns.
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- June 4, 2016 at 5:37 am
Hi,
I had Gamma Knife at UCSF in June 2011, on four locations in my brain. I highly recommend UCSF. Let me know if you have any questions. Their neurosurgery department is top-rated. Knock on wood, there have been no problems in the brain since.
Hope this helps. – Kyle
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- June 4, 2016 at 5:37 am
Hi,
I had Gamma Knife at UCSF in June 2011, on four locations in my brain. I highly recommend UCSF. Let me know if you have any questions. Their neurosurgery department is top-rated. Knock on wood, there have been no problems in the brain since.
Hope this helps. – Kyle
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- June 4, 2016 at 5:37 am
Hi,
I had Gamma Knife at UCSF in June 2011, on four locations in my brain. I highly recommend UCSF. Let me know if you have any questions. Their neurosurgery department is top-rated. Knock on wood, there have been no problems in the brain since.
Hope this helps. – Kyle
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- June 5, 2016 at 5:07 am
My radiation oncologist is Dr. Patricia (Penny) Sneed. My neurosurgeon is Dr. Michael McDermott. They are the co-directors of the Gamma Knife and CyberKnife Radiosurgery Program. Dr. Sneed's bio is here: http://radonc.ucsf.edu/penny-sneed. For more information on their Gamma Knife program, and Dr. McDermott, see http://neurosurgery.ucsf.edu/index.php/radiosurgery.html.
If I ever needed more treatment, they are who I would go back to. Probably even if I lived elsewhere in the country.
My understanding about brain mets, from a webinar with doctors specializing in gamma knife, is it is best to treat them right away if they can be caught while they are still small. Which seems true in my experience. Some of mine doubled in diameter in just 2 or 3 weeks.
Hope some of this info helps. Good luck to your Mom.
– Kyle
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- June 5, 2016 at 5:07 am
My radiation oncologist is Dr. Patricia (Penny) Sneed. My neurosurgeon is Dr. Michael McDermott. They are the co-directors of the Gamma Knife and CyberKnife Radiosurgery Program. Dr. Sneed's bio is here: http://radonc.ucsf.edu/penny-sneed. For more information on their Gamma Knife program, and Dr. McDermott, see http://neurosurgery.ucsf.edu/index.php/radiosurgery.html.
If I ever needed more treatment, they are who I would go back to. Probably even if I lived elsewhere in the country.
My understanding about brain mets, from a webinar with doctors specializing in gamma knife, is it is best to treat them right away if they can be caught while they are still small. Which seems true in my experience. Some of mine doubled in diameter in just 2 or 3 weeks.
Hope some of this info helps. Good luck to your Mom.
– Kyle
-
- June 5, 2016 at 5:07 am
My radiation oncologist is Dr. Patricia (Penny) Sneed. My neurosurgeon is Dr. Michael McDermott. They are the co-directors of the Gamma Knife and CyberKnife Radiosurgery Program. Dr. Sneed's bio is here: http://radonc.ucsf.edu/penny-sneed. For more information on their Gamma Knife program, and Dr. McDermott, see http://neurosurgery.ucsf.edu/index.php/radiosurgery.html.
If I ever needed more treatment, they are who I would go back to. Probably even if I lived elsewhere in the country.
My understanding about brain mets, from a webinar with doctors specializing in gamma knife, is it is best to treat them right away if they can be caught while they are still small. Which seems true in my experience. Some of mine doubled in diameter in just 2 or 3 weeks.
Hope some of this info helps. Good luck to your Mom.
– Kyle
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