› Forums › General Melanoma Community › Whole Brain Radiation – totally rushed
- This topic has 21 replies, 6 voices, and was last updated 7 years, 3 months ago by
Patina.
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- January 18, 2017 at 3:02 am
I haven't been on the site for a while, for a combination of reasons. First was that my husband was doing well – I took time off, the braf/combo showed significant success to a PET scan that showed no activity…so really hopefully NED. That was in November, and then we went away for a month….being back, things started to change – fatique, continued weight loss, and use of medical maijuana as his medicine. Our PET scan since our return was yesterday, and our oncologist called last night to say they found significantly life threatening results – he called my husband, who was totally confused. Then we get a call confirming an 11am meeting with a radiation oncologist, then we meet with our primary oncologist tomorrow. The Radiation Oncologist showed us the PET and the brain was "littered" with white spots, all over – he wanted an immediate brain mri – but with scheduling we got a 7:30am CT scheduled , then we go back to the radiation oncologist for results and "mapping", then back over to our primary to see what the heck about the other tumors that were found. The radiation oncolgist wants to do 10 days of whole brain radiation, 10 minutes a day. He said charles will lose his hair, no biggie and fatique – but then? What happens then? What happens with the other tumors?
For 9 months he was on BRAF, and was sick every day – he isn't going to jump back into potential daily hell……
Can anyone tell me about whole brain radiation – they feel it is urgent to do this at once? Thoughts…
The second reason I stayed away was I was fearful of seeing "cyber friends" not doing well………it felt too personal to hear bad stories.
Rita
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- January 18, 2017 at 3:46 am
Get a second opinion ASAP! Whole brain radiation is not the way to go. Gamma knife radiation is the best way to go. Are you seeing a Melanoma specialist?
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- January 18, 2017 at 3:46 am
Get a second opinion ASAP! Whole brain radiation is not the way to go. Gamma knife radiation is the best way to go. Are you seeing a Melanoma specialist?
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- January 18, 2017 at 3:46 am
Get a second opinion ASAP! Whole brain radiation is not the way to go. Gamma knife radiation is the best way to go. Are you seeing a Melanoma specialist?
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- January 18, 2017 at 5:10 am
If I remember, you are in San Diego. There are nationally recognized melanoma experts in Los Angeles–Dr. Antoni Ribas at UCLA and Dr. Hamid at Angeles Clinic in Santa Monica (lots of talk about him in recent posts).
I would urge you to consult with one of them.
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- January 18, 2017 at 5:10 am
If I remember, you are in San Diego. There are nationally recognized melanoma experts in Los Angeles–Dr. Antoni Ribas at UCLA and Dr. Hamid at Angeles Clinic in Santa Monica (lots of talk about him in recent posts).
I would urge you to consult with one of them.
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- January 18, 2017 at 5:10 am
If I remember, you are in San Diego. There are nationally recognized melanoma experts in Los Angeles–Dr. Antoni Ribas at UCLA and Dr. Hamid at Angeles Clinic in Santa Monica (lots of talk about him in recent posts).
I would urge you to consult with one of them.
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- January 18, 2017 at 2:04 pm
Hello Rita,
After resected a nodule in my brain and some debate, I had whole brain radiation in 2013 (based on high probability of recurrence).
I was very concerned about side effects.
Results were great. After that I had 4 new metastasis in different places but brain is always clear.
My side effect was extreme fatigue for months but not pain just all day on bed the first months. I need 8 months to get back to work but, so far, brain is not an issue anymore.
I am doing well in pembro since Decemeber 2015 (19 dosis)
Best regards for Charles and you,
Guillermo (from Buenos Aires, Argentina)
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- January 18, 2017 at 2:04 pm
Hello Rita,
After resected a nodule in my brain and some debate, I had whole brain radiation in 2013 (based on high probability of recurrence).
I was very concerned about side effects.
Results were great. After that I had 4 new metastasis in different places but brain is always clear.
My side effect was extreme fatigue for months but not pain just all day on bed the first months. I need 8 months to get back to work but, so far, brain is not an issue anymore.
I am doing well in pembro since Decemeber 2015 (19 dosis)
Best regards for Charles and you,
Guillermo (from Buenos Aires, Argentina)
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- January 18, 2017 at 2:04 pm
Hello Rita,
After resected a nodule in my brain and some debate, I had whole brain radiation in 2013 (based on high probability of recurrence).
I was very concerned about side effects.
Results were great. After that I had 4 new metastasis in different places but brain is always clear.
My side effect was extreme fatigue for months but not pain just all day on bed the first months. I need 8 months to get back to work but, so far, brain is not an issue anymore.
I am doing well in pembro since Decemeber 2015 (19 dosis)
Best regards for Charles and you,
Guillermo (from Buenos Aires, Argentina)
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- January 18, 2017 at 5:21 pm
Hey, bud! so nice to hear that you are doing so well. it is getting to 4 years! Good luck
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- January 18, 2017 at 5:21 pm
Hey, bud! so nice to hear that you are doing so well. it is getting to 4 years! Good luck
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- January 18, 2017 at 5:21 pm
Hey, bud! so nice to hear that you are doing so well. it is getting to 4 years! Good luck
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- January 18, 2017 at 3:33 pm
While I'm happy the two of you managed to get away from it all for awhile, I am SO sorry to hear how rapidly it appears that his mets have kicked back into gear. : ( This is his BRAIN… it is the most vital area to treat first and foremost, because the spread there will have the most detrimental effects. That said, while you don't have a huge time for delay, I would defintiely recommend a second opinion and a more detailed MRI. If your husband is not currently having neurological deficit from the brain mets, call and see if you can book a radiation oncologist within the next week for a second opinion. Your husband may indeed need whole brain radiation… depending on the size and numbers of lesions to be treated. However, because of the higher odds of neurologically damaging side effects, you'll want to be certain that this is the best decision. I suppose the most important question is…. Do you trust your radiation oncologist? I am a patient of Dr. Eric Chang at USC… and he is indeed, incredible. MIT grad, then Harvard for med school, worked at MD Anderson until USC stole him away for a Department Head position here in California. He's attentive, careing, incredibly bright, aaaaand… his dad was also a rad onc. He was practically born to be the perfect doctor. :-p
As for moving forward with the "next step" once the brain is taken care of….. please keep in mind that immunotherapy drugs have a completely different side effect profile than BRAF inhibitors. However, doctors may suggest the BRAF drugs for a short period, for their more rapid effect.
Stength and prayers to you and Charles!
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- January 18, 2017 at 3:33 pm
While I'm happy the two of you managed to get away from it all for awhile, I am SO sorry to hear how rapidly it appears that his mets have kicked back into gear. : ( This is his BRAIN… it is the most vital area to treat first and foremost, because the spread there will have the most detrimental effects. That said, while you don't have a huge time for delay, I would defintiely recommend a second opinion and a more detailed MRI. If your husband is not currently having neurological deficit from the brain mets, call and see if you can book a radiation oncologist within the next week for a second opinion. Your husband may indeed need whole brain radiation… depending on the size and numbers of lesions to be treated. However, because of the higher odds of neurologically damaging side effects, you'll want to be certain that this is the best decision. I suppose the most important question is…. Do you trust your radiation oncologist? I am a patient of Dr. Eric Chang at USC… and he is indeed, incredible. MIT grad, then Harvard for med school, worked at MD Anderson until USC stole him away for a Department Head position here in California. He's attentive, careing, incredibly bright, aaaaand… his dad was also a rad onc. He was practically born to be the perfect doctor. :-p
As for moving forward with the "next step" once the brain is taken care of….. please keep in mind that immunotherapy drugs have a completely different side effect profile than BRAF inhibitors. However, doctors may suggest the BRAF drugs for a short period, for their more rapid effect.
Stength and prayers to you and Charles!
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- January 18, 2017 at 3:33 pm
While I'm happy the two of you managed to get away from it all for awhile, I am SO sorry to hear how rapidly it appears that his mets have kicked back into gear. : ( This is his BRAIN… it is the most vital area to treat first and foremost, because the spread there will have the most detrimental effects. That said, while you don't have a huge time for delay, I would defintiely recommend a second opinion and a more detailed MRI. If your husband is not currently having neurological deficit from the brain mets, call and see if you can book a radiation oncologist within the next week for a second opinion. Your husband may indeed need whole brain radiation… depending on the size and numbers of lesions to be treated. However, because of the higher odds of neurologically damaging side effects, you'll want to be certain that this is the best decision. I suppose the most important question is…. Do you trust your radiation oncologist? I am a patient of Dr. Eric Chang at USC… and he is indeed, incredible. MIT grad, then Harvard for med school, worked at MD Anderson until USC stole him away for a Department Head position here in California. He's attentive, careing, incredibly bright, aaaaand… his dad was also a rad onc. He was practically born to be the perfect doctor. :-p
As for moving forward with the "next step" once the brain is taken care of….. please keep in mind that immunotherapy drugs have a completely different side effect profile than BRAF inhibitors. However, doctors may suggest the BRAF drugs for a short period, for their more rapid effect.
Stength and prayers to you and Charles!
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- January 18, 2017 at 6:32 pm
Go see Dr. Eric Chang at USC in Los Angeles.
He treated my Mom for 17 brain mets in one day and I know he has done more than that at one time.
Not all radiation oncologists are the same. My Mom's first radiation oncologist left brain met untreated and kept saying it was a blood vessel… So glad we got a second opinion with Dr. Chang.
I will see if I can email you a contact I have for his office.
Gamma knife is nothing. You do get the MRI and spend hours or the day waiting or getting treated. My Mom was a little tired, but she'd also just been released from the hospital too. The only thing she complained about was a stiff neck, but it was gone the next day.
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- January 18, 2017 at 6:32 pm
Go see Dr. Eric Chang at USC in Los Angeles.
He treated my Mom for 17 brain mets in one day and I know he has done more than that at one time.
Not all radiation oncologists are the same. My Mom's first radiation oncologist left brain met untreated and kept saying it was a blood vessel… So glad we got a second opinion with Dr. Chang.
I will see if I can email you a contact I have for his office.
Gamma knife is nothing. You do get the MRI and spend hours or the day waiting or getting treated. My Mom was a little tired, but she'd also just been released from the hospital too. The only thing she complained about was a stiff neck, but it was gone the next day.
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- January 18, 2017 at 6:32 pm
Go see Dr. Eric Chang at USC in Los Angeles.
He treated my Mom for 17 brain mets in one day and I know he has done more than that at one time.
Not all radiation oncologists are the same. My Mom's first radiation oncologist left brain met untreated and kept saying it was a blood vessel… So glad we got a second opinion with Dr. Chang.
I will see if I can email you a contact I have for his office.
Gamma knife is nothing. You do get the MRI and spend hours or the day waiting or getting treated. My Mom was a little tired, but she'd also just been released from the hospital too. The only thing she complained about was a stiff neck, but it was gone the next day.
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