› Forums › General Melanoma Community › Yervoy success BUT teeny spot on brain
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5374brian.
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- March 24, 2013 at 6:12 am
On Friday I got the results of my first post-Yervoy PET/CT scan (also results of brain MRI done the same day). By the way I’m happy to say I was able to tolerate all 4 doses with minimum side effects. The good news is that the scans show no evidence of disease in the previously involved areas (liver, lungs and abdomen). YEA Yervoy!! Looks like I am a responder—woohoo!
On Friday I got the results of my first post-Yervoy PET/CT scan (also results of brain MRI done the same day). By the way I’m happy to say I was able to tolerate all 4 doses with minimum side effects. The good news is that the scans show no evidence of disease in the previously involved areas (liver, lungs and abdomen). YEA Yervoy!! Looks like I am a responder—woohoo!
However, the brain MRI shows a teeny spot of disease that wasn’t there in January when I had a problem with my pituitary. The way I understand it, that teeny spot is what we can see. There may be others we can’t see at this point. Doing nothing is not a good option! Next stop: radiation. My retinue of docs now includes a radiation oncologist and a neurosurgeon. All that training yet I’m the one who’s stuck with the decision. Sigh. I can go with whole brain radiation and not leave anything to chance OR do cyberknife and zap what is showing. I am leaning in the direction of the cyberknife initially and then at the first hint of another spot, doing the whole brain thing. What have others done in similar circumstances? What would you do??
Ann
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- March 24, 2013 at 4:53 pm
Ann,Glad to hear you are a partial responder to Yervoy. I did SRS ( similar to cyber knife) and will do it again if i need to. I will hold WBR until a last resort. It can only be done once and does have higher risk of serious side effects. I think most people do it this way and there are many out there who have done SRS/cyber knife more than once.
I recommend melanoma international foundation’s webinar on radiation treatment for brain mets.
http://www.melanomainternational.org/news/brain_metastases1.html
Amy
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- March 24, 2013 at 4:53 pm
Ann,Glad to hear you are a partial responder to Yervoy. I did SRS ( similar to cyber knife) and will do it again if i need to. I will hold WBR until a last resort. It can only be done once and does have higher risk of serious side effects. I think most people do it this way and there are many out there who have done SRS/cyber knife more than once.
I recommend melanoma international foundation’s webinar on radiation treatment for brain mets.
http://www.melanomainternational.org/news/brain_metastases1.html
Amy
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- March 24, 2013 at 4:53 pm
Ann,Glad to hear you are a partial responder to Yervoy. I did SRS ( similar to cyber knife) and will do it again if i need to. I will hold WBR until a last resort. It can only be done once and does have higher risk of serious side effects. I think most people do it this way and there are many out there who have done SRS/cyber knife more than once.
I recommend melanoma international foundation’s webinar on radiation treatment for brain mets.
http://www.melanomainternational.org/news/brain_metastases1.html
Amy
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- March 24, 2013 at 5:25 pm
Hi Ann,
Like Amy I also have received beam radiation rather than WBR to the brain, twice now so far. I had CyberKnife in 2010, Gamma Knife (similar to CyberKnife) in 2011. To date I have not had WBR and, like Amy, also view that as a last resort. My current radiation oncologist does take a position on this, recommending Gamma Knife over WBR whenever it can be used (usually based on overall tumor volume and the # of tumors).
The webinar Amy recommends is definiely recommended viewing. I learned a lot that my radiation oncologist wouldn't have the time to go into with me. One thing Dr. Veronicia Chiang (head of Gamma Knife at Yale) says in the webinar is, they don't wait to treat small brain mets at Yale, they treat immediately, the earlier the better is their stance. The webinar delves into a lot of scenarios with radiation to the brain — WBR, CyberKnife, Gamma Knife quite a bit, and more.
Congratulations on the response in your body. Like you I've also had a good response in my body. My crazed (not really) neurosurgeon said to me, "we'll control your disease intracranially now." It seemed a pretty bold statement, but it's been working for me for awhile now.
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- March 24, 2013 at 5:25 pm
Hi Ann,
Like Amy I also have received beam radiation rather than WBR to the brain, twice now so far. I had CyberKnife in 2010, Gamma Knife (similar to CyberKnife) in 2011. To date I have not had WBR and, like Amy, also view that as a last resort. My current radiation oncologist does take a position on this, recommending Gamma Knife over WBR whenever it can be used (usually based on overall tumor volume and the # of tumors).
The webinar Amy recommends is definiely recommended viewing. I learned a lot that my radiation oncologist wouldn't have the time to go into with me. One thing Dr. Veronicia Chiang (head of Gamma Knife at Yale) says in the webinar is, they don't wait to treat small brain mets at Yale, they treat immediately, the earlier the better is their stance. The webinar delves into a lot of scenarios with radiation to the brain — WBR, CyberKnife, Gamma Knife quite a bit, and more.
Congratulations on the response in your body. Like you I've also had a good response in my body. My crazed (not really) neurosurgeon said to me, "we'll control your disease intracranially now." It seemed a pretty bold statement, but it's been working for me for awhile now.
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- March 24, 2013 at 5:25 pm
Hi Ann,
Like Amy I also have received beam radiation rather than WBR to the brain, twice now so far. I had CyberKnife in 2010, Gamma Knife (similar to CyberKnife) in 2011. To date I have not had WBR and, like Amy, also view that as a last resort. My current radiation oncologist does take a position on this, recommending Gamma Knife over WBR whenever it can be used (usually based on overall tumor volume and the # of tumors).
The webinar Amy recommends is definiely recommended viewing. I learned a lot that my radiation oncologist wouldn't have the time to go into with me. One thing Dr. Veronicia Chiang (head of Gamma Knife at Yale) says in the webinar is, they don't wait to treat small brain mets at Yale, they treat immediately, the earlier the better is their stance. The webinar delves into a lot of scenarios with radiation to the brain — WBR, CyberKnife, Gamma Knife quite a bit, and more.
Congratulations on the response in your body. Like you I've also had a good response in my body. My crazed (not really) neurosurgeon said to me, "we'll control your disease intracranially now." It seemed a pretty bold statement, but it's been working for me for awhile now.
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- March 24, 2013 at 10:51 pm
Amy and Kylez….thank you, thank you, thank you. I am so grateful to you both for your responses. My head is swimming with the information I've learned today. I just finished watching the webinar you suggested and will watch it again before my appointment on Wednesday. Unless those doctors come up with something pretty compelling I've decided the whole brain radiation is not even an option.
Ann
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- March 24, 2013 at 10:51 pm
Amy and Kylez….thank you, thank you, thank you. I am so grateful to you both for your responses. My head is swimming with the information I've learned today. I just finished watching the webinar you suggested and will watch it again before my appointment on Wednesday. Unless those doctors come up with something pretty compelling I've decided the whole brain radiation is not even an option.
Ann
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- March 24, 2013 at 10:51 pm
Amy and Kylez….thank you, thank you, thank you. I am so grateful to you both for your responses. My head is swimming with the information I've learned today. I just finished watching the webinar you suggested and will watch it again before my appointment on Wednesday. Unless those doctors come up with something pretty compelling I've decided the whole brain radiation is not even an option.
Ann
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- March 25, 2013 at 1:32 am
Glad to hear your success with Yervoy. My wife had her 4th treatment on March 19 and are hoping for the good news at your follow up in April.. She also had a 4mm spot on her brain that they just did radiation on the one spot. The doctor said he perfers treating the spots when possilbe rather than the whole brain. We hope you continuer with great news and positive updates.
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- March 25, 2013 at 1:32 am
Glad to hear your success with Yervoy. My wife had her 4th treatment on March 19 and are hoping for the good news at your follow up in April.. She also had a 4mm spot on her brain that they just did radiation on the one spot. The doctor said he perfers treating the spots when possilbe rather than the whole brain. We hope you continuer with great news and positive updates.
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- March 25, 2013 at 1:32 am
Glad to hear your success with Yervoy. My wife had her 4th treatment on March 19 and are hoping for the good news at your follow up in April.. She also had a 4mm spot on her brain that they just did radiation on the one spot. The doctor said he perfers treating the spots when possilbe rather than the whole brain. We hope you continuer with great news and positive updates.
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