› Forums › General Melanoma Community › Need advice
- This topic has 18 replies, 4 voices, and was last updated 10 years, 10 months ago by
ecc26.
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- June 21, 2013 at 5:23 pm
I have 19 small mets tumors in my brain. I had the largest tumor in my brain removed and will begin whole head radiation in a few weeks. Any advice regarding treatments appreciatedI have 19 small mets tumors in my brain. I had the largest tumor in my brain removed and will begin whole head radiation in a few weeks. Any advice regarding treatments appreciated
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- June 22, 2013 at 9:37 pm
My wife completed WBR about 45 days ago and her follow up scans showed the radition was doing its job. We are not sure if it is the WBR or the IPI treatment that she had but her taste buds have now changed. Foods she used to like now she doesnt even like the smell while others that she didnt like she will eat. When her hair started coming out, she decided to go ahead and get it shaved. Now she wears many different great hats and turbans.. Good luck and keep believing everything will be ok…
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- June 22, 2013 at 9:37 pm
My wife completed WBR about 45 days ago and her follow up scans showed the radition was doing its job. We are not sure if it is the WBR or the IPI treatment that she had but her taste buds have now changed. Foods she used to like now she doesnt even like the smell while others that she didnt like she will eat. When her hair started coming out, she decided to go ahead and get it shaved. Now she wears many different great hats and turbans.. Good luck and keep believing everything will be ok…
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- June 22, 2013 at 9:37 pm
My wife completed WBR about 45 days ago and her follow up scans showed the radition was doing its job. We are not sure if it is the WBR or the IPI treatment that she had but her taste buds have now changed. Foods she used to like now she doesnt even like the smell while others that she didnt like she will eat. When her hair started coming out, she decided to go ahead and get it shaved. Now she wears many different great hats and turbans.. Good luck and keep believing everything will be ok…
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- June 22, 2013 at 10:08 pm
Hi
I am 31 and currently 2 weeks into a 3 week course of whole brain radiation for 7 brain mets plus "several" (whatever that means) that may be in the meninges. So far the only thing I've noticed is that if I'm not careful to make sure I eat regularly I start to feel nauseated. My doctors have told me to expect to have my hair fall out and that the biggest side effect aside from that (assuming you don't have any symptoms from your brain mets like headaches, etc) is fatigue. They told me the fatigue doesn't show up until the end or shortly after finishing treatment, but that to really try hard to exercise regularly during treatment as that can help keep fatigue to a minimum. I've been exercising and so far I still have my hair (ask again in a week that may be different- I also plan to shave when it starts coming out) and have not had any fatigue. My doctors are hoping the radiation will eliminate at least some of the smaller ones (hopefully all of them) and if we can at least cut the number down I may be able to do SRS for any leftovers.
I also was started on Ipilimumab (Yervoy) last week. I don't know what your history is (what therapies you've had, etc), but if you haven't tried Yervoy it's something to bring up with your doctor- it has been shown that when it works it controls/shrinks tumors in the brain just as well as it does tumors outside the brain (even though the drug itself doesn't cross out of the blood vessels into the brain, the immune cells it activates do). If you haven't been tested for the BRAF mutation and can get tested you should discuss that as well as there are some drugs available now for people who are BRAF positive- they have a reasonable (but by no means perfect) track record with brain mets. There's also chemo, which does not work well in many patients, but some get a really remarkable response- including in the brain. If the brain is your only (or most concerning) area of metastasis and the radiation +/- other therapies can stabilize it, you can also think about trying to join a clinical trail- the anti PD1 trails in particular are looking promising. These are all things you can and should discuss with your doctor.
So long story short- I don't know what your particular history is, but there's a lot more available these days than there ever used to be for those of us battling brain mets- talk to your doctor(s) and come up with a plan of attack, and good luck to you in your battle!
-Eva
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- June 24, 2013 at 12:44 am
The radiaton oncologist suggested at least a 30 min walk 3-4 times per week. Any cardio for around 30 min should be ok. I used to be a runner, but since all of this started while I was recovering from my last round of IL2 I didn't get my stamina back up in time to be very effective, so I've mostly been walking and I have an eliptical machine in the house for rainy days. Regarding surgery- no, at this point surgery has not really been discussed- mainly (I think) because the largest met was 4mm and I am not symptomatic, but locations may also not be suitible for craniotomy and with the multiple mets radiation seemed to be the best way to try to get everything rather than cherry picking one or 2, only to let the others grow while I'm in recovery. We have discussed possibly following WBR with SRS depending on what we get for results with the WBR.
Short history of my case (as short as I can make it): Melanoma right upper back, originally stage IIIB with 1 positive lymph node in right axilla. 1 year interferon with axillary mass appearing at the end of therapy. Mass resected, scans clean for 3 months then found very small subcutaneous mass on lower abdomen. New scans showed multiple subcutaneous, breast and 2 tiny lung mets. All said and done mets turned out to be subcutaneous, lung, and spine (T10). 3 courses (6 weeks total) IL2, appeared to be working well until 1 week after final dose when new subcutaneous mets palpated, even as older mets were shrinking. CT showed all new mets were subcutaneous, but MRI showed brain mets. So now I have to try and stabilize the brain (or better yet clear the MRI) before any discussions about clinical trials.
Hope this info helps some. One last note- my radiation oncologist has also started me on an alzheimer's medication called Namenda. I started it when I started the radiation and will be on it for 6 months. He started it because he said there's evidence that it may help prevent, or at least lessen the possible long term memory side effects that can sometimes happen with WBR. No idea if it will work, but it at least doesn't seem to be adding any side effects.
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- June 24, 2013 at 12:44 am
The radiaton oncologist suggested at least a 30 min walk 3-4 times per week. Any cardio for around 30 min should be ok. I used to be a runner, but since all of this started while I was recovering from my last round of IL2 I didn't get my stamina back up in time to be very effective, so I've mostly been walking and I have an eliptical machine in the house for rainy days. Regarding surgery- no, at this point surgery has not really been discussed- mainly (I think) because the largest met was 4mm and I am not symptomatic, but locations may also not be suitible for craniotomy and with the multiple mets radiation seemed to be the best way to try to get everything rather than cherry picking one or 2, only to let the others grow while I'm in recovery. We have discussed possibly following WBR with SRS depending on what we get for results with the WBR.
Short history of my case (as short as I can make it): Melanoma right upper back, originally stage IIIB with 1 positive lymph node in right axilla. 1 year interferon with axillary mass appearing at the end of therapy. Mass resected, scans clean for 3 months then found very small subcutaneous mass on lower abdomen. New scans showed multiple subcutaneous, breast and 2 tiny lung mets. All said and done mets turned out to be subcutaneous, lung, and spine (T10). 3 courses (6 weeks total) IL2, appeared to be working well until 1 week after final dose when new subcutaneous mets palpated, even as older mets were shrinking. CT showed all new mets were subcutaneous, but MRI showed brain mets. So now I have to try and stabilize the brain (or better yet clear the MRI) before any discussions about clinical trials.
Hope this info helps some. One last note- my radiation oncologist has also started me on an alzheimer's medication called Namenda. I started it when I started the radiation and will be on it for 6 months. He started it because he said there's evidence that it may help prevent, or at least lessen the possible long term memory side effects that can sometimes happen with WBR. No idea if it will work, but it at least doesn't seem to be adding any side effects.
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- June 24, 2013 at 12:44 am
The radiaton oncologist suggested at least a 30 min walk 3-4 times per week. Any cardio for around 30 min should be ok. I used to be a runner, but since all of this started while I was recovering from my last round of IL2 I didn't get my stamina back up in time to be very effective, so I've mostly been walking and I have an eliptical machine in the house for rainy days. Regarding surgery- no, at this point surgery has not really been discussed- mainly (I think) because the largest met was 4mm and I am not symptomatic, but locations may also not be suitible for craniotomy and with the multiple mets radiation seemed to be the best way to try to get everything rather than cherry picking one or 2, only to let the others grow while I'm in recovery. We have discussed possibly following WBR with SRS depending on what we get for results with the WBR.
Short history of my case (as short as I can make it): Melanoma right upper back, originally stage IIIB with 1 positive lymph node in right axilla. 1 year interferon with axillary mass appearing at the end of therapy. Mass resected, scans clean for 3 months then found very small subcutaneous mass on lower abdomen. New scans showed multiple subcutaneous, breast and 2 tiny lung mets. All said and done mets turned out to be subcutaneous, lung, and spine (T10). 3 courses (6 weeks total) IL2, appeared to be working well until 1 week after final dose when new subcutaneous mets palpated, even as older mets were shrinking. CT showed all new mets were subcutaneous, but MRI showed brain mets. So now I have to try and stabilize the brain (or better yet clear the MRI) before any discussions about clinical trials.
Hope this info helps some. One last note- my radiation oncologist has also started me on an alzheimer's medication called Namenda. I started it when I started the radiation and will be on it for 6 months. He started it because he said there's evidence that it may help prevent, or at least lessen the possible long term memory side effects that can sometimes happen with WBR. No idea if it will work, but it at least doesn't seem to be adding any side effects.
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- June 22, 2013 at 10:08 pm
Hi
I am 31 and currently 2 weeks into a 3 week course of whole brain radiation for 7 brain mets plus "several" (whatever that means) that may be in the meninges. So far the only thing I've noticed is that if I'm not careful to make sure I eat regularly I start to feel nauseated. My doctors have told me to expect to have my hair fall out and that the biggest side effect aside from that (assuming you don't have any symptoms from your brain mets like headaches, etc) is fatigue. They told me the fatigue doesn't show up until the end or shortly after finishing treatment, but that to really try hard to exercise regularly during treatment as that can help keep fatigue to a minimum. I've been exercising and so far I still have my hair (ask again in a week that may be different- I also plan to shave when it starts coming out) and have not had any fatigue. My doctors are hoping the radiation will eliminate at least some of the smaller ones (hopefully all of them) and if we can at least cut the number down I may be able to do SRS for any leftovers.
I also was started on Ipilimumab (Yervoy) last week. I don't know what your history is (what therapies you've had, etc), but if you haven't tried Yervoy it's something to bring up with your doctor- it has been shown that when it works it controls/shrinks tumors in the brain just as well as it does tumors outside the brain (even though the drug itself doesn't cross out of the blood vessels into the brain, the immune cells it activates do). If you haven't been tested for the BRAF mutation and can get tested you should discuss that as well as there are some drugs available now for people who are BRAF positive- they have a reasonable (but by no means perfect) track record with brain mets. There's also chemo, which does not work well in many patients, but some get a really remarkable response- including in the brain. If the brain is your only (or most concerning) area of metastasis and the radiation +/- other therapies can stabilize it, you can also think about trying to join a clinical trail- the anti PD1 trails in particular are looking promising. These are all things you can and should discuss with your doctor.
So long story short- I don't know what your particular history is, but there's a lot more available these days than there ever used to be for those of us battling brain mets- talk to your doctor(s) and come up with a plan of attack, and good luck to you in your battle!
-Eva
-
- June 22, 2013 at 10:08 pm
Hi
I am 31 and currently 2 weeks into a 3 week course of whole brain radiation for 7 brain mets plus "several" (whatever that means) that may be in the meninges. So far the only thing I've noticed is that if I'm not careful to make sure I eat regularly I start to feel nauseated. My doctors have told me to expect to have my hair fall out and that the biggest side effect aside from that (assuming you don't have any symptoms from your brain mets like headaches, etc) is fatigue. They told me the fatigue doesn't show up until the end or shortly after finishing treatment, but that to really try hard to exercise regularly during treatment as that can help keep fatigue to a minimum. I've been exercising and so far I still have my hair (ask again in a week that may be different- I also plan to shave when it starts coming out) and have not had any fatigue. My doctors are hoping the radiation will eliminate at least some of the smaller ones (hopefully all of them) and if we can at least cut the number down I may be able to do SRS for any leftovers.
I also was started on Ipilimumab (Yervoy) last week. I don't know what your history is (what therapies you've had, etc), but if you haven't tried Yervoy it's something to bring up with your doctor- it has been shown that when it works it controls/shrinks tumors in the brain just as well as it does tumors outside the brain (even though the drug itself doesn't cross out of the blood vessels into the brain, the immune cells it activates do). If you haven't been tested for the BRAF mutation and can get tested you should discuss that as well as there are some drugs available now for people who are BRAF positive- they have a reasonable (but by no means perfect) track record with brain mets. There's also chemo, which does not work well in many patients, but some get a really remarkable response- including in the brain. If the brain is your only (or most concerning) area of metastasis and the radiation +/- other therapies can stabilize it, you can also think about trying to join a clinical trail- the anti PD1 trails in particular are looking promising. These are all things you can and should discuss with your doctor.
So long story short- I don't know what your particular history is, but there's a lot more available these days than there ever used to be for those of us battling brain mets- talk to your doctor(s) and come up with a plan of attack, and good luck to you in your battle!
-Eva
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