› Forums › General Melanoma Community › New Stage IV – treatment options for several lung mets and surgically removed brain met
- This topic has 6 replies, 3 voices, and was last updated 12 years, 9 months ago by
NancyGM.
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- July 24, 2011 at 1:28 am
(This is a re-post with a more descriptive title)
(This is a re-post with a more descriptive title)
Hi folks, I am a 57-year-old "youngster" who was diagnosed a few weeks ago with Stage IV melanoma. I had a lesion removed from my back a few years ago along with the sentinel glands from both armpits, which came back negative. I was so happy that I had dodged the proverbial bullet. A year later I was diagnosed with a meningioma which was removed successfully. On my yearly CT scan (June 8th of this year), my primary doc said that I had another brain tumor that was in a totally different location from the first. Since I had previously had a melanoma, she was very concerned. She ordered a full body CT and sent me to the neurosurgeon to set up a surgery. (This is all slightly complicated by the fact that my treatment is through the Sacramento VA. My surgery had to be done at the David Grant Hospital at Travis AFB). Just as I was about to go under, the surgeon received the results from the full body scan which showed several tumors in my lungs. They were thinking about stopping the surgery and doing gamma knife on my brain and doing biopsy on my lungs, but they decided to go ahead and remove the brain tumor anyway. It was definitely melanoma. The oncologist has said that the lung tumors are not resectable because of the number and locations.
Basically, the oncologist did not give me a lot of hope due to the brain tumor prognosis. I came in to meet with her for the first time with lots of questions but got very few answers. I guess the most discouraging part of the research is not knowing why some people respond and others don't. Nonetheless, I am ready to fight the good fight as I am a single mom to a wonderful 17-year-old daughter, and I have lots of things to do!!
The first thing that is going to happen in a couple of weeks is whole brain radiation at Daivd Grant Hospital. Then I need to let my oncologist know a couple of weeks after that what treatment option I have decided on. IL-2 seems to have better odds than some of the others. Unfortunately, I would have to go to the Palo Alto VA Hospital where there is a staff dedicated to dealing with the side effects. I would have no family there and my understanding is that the side effects are treacherous (any personal experiences would be GREATLY appreciated).
Yervoy (ipi) also seems like a viable option, and I can be treated in Sacramento. Does anyone have any personal experiences, good or bad, with this drug?
I feel like everything is closing in on me, even though I am pretty sure in reality if one treatment does not work, another can be tried.
Any input would be so greatly appreciated!!
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- July 24, 2011 at 2:09 am
Hello,
I was Stage IV in July 2005. I went on a combination of Temodar and Nexavar and had very good luck. I am currently NED. Unfortunately I was the only one of 147 in the trial that had lasting results. However, I know that there have been other people who have benefited from Temodar alone. It is a drug that can work on Brain mets – crosses the blood brain barrier- and the side effects were very tollerable.
Best wishes to you
Ed
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- July 24, 2011 at 2:09 am
Hello,
I was Stage IV in July 2005. I went on a combination of Temodar and Nexavar and had very good luck. I am currently NED. Unfortunately I was the only one of 147 in the trial that had lasting results. However, I know that there have been other people who have benefited from Temodar alone. It is a drug that can work on Brain mets – crosses the blood brain barrier- and the side effects were very tollerable.
Best wishes to you
Ed
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- July 24, 2011 at 3:00 pm
So sorry to hear of your diagnosis – it is a nasty disease particularly when it goes to the brain. I recommend you do a search on this site using key words as you will find many posts relating to the issues and questions you raised. For example on the topic of whole brain radiation I posted a reply to a similar question.
I highy recommend you look at clinicaltrial.gov for treatments involving brain tumors. MD Anderson has one for example that uses chemo, tumor infiltrating lymphocytes and interleukin 2 in which presence of brain tumors or active central nervous system disease is not a knock out factor.
Whole brain radiation therapy may buy you a few months but it also runs the risk of reduced brain function. The only hopeful approach in my view is combination therapy with WBRT and some sort of chemo which crosses the blood brain barrier. Or to go the MD Anderson route.
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- July 24, 2011 at 3:00 pm
So sorry to hear of your diagnosis – it is a nasty disease particularly when it goes to the brain. I recommend you do a search on this site using key words as you will find many posts relating to the issues and questions you raised. For example on the topic of whole brain radiation I posted a reply to a similar question.
I highy recommend you look at clinicaltrial.gov for treatments involving brain tumors. MD Anderson has one for example that uses chemo, tumor infiltrating lymphocytes and interleukin 2 in which presence of brain tumors or active central nervous system disease is not a knock out factor.
Whole brain radiation therapy may buy you a few months but it also runs the risk of reduced brain function. The only hopeful approach in my view is combination therapy with WBRT and some sort of chemo which crosses the blood brain barrier. Or to go the MD Anderson route.
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- July 25, 2011 at 3:16 pm
I was treated with Temodar for a lung me ( which could not be surgically removed) and a possible node met( that could not be easily biopsied and later was discovered to not be involved). I had a full response and have been NED for 3 and a half years. Best of luck to you. I was raising my teen girls- now 19 and 21- as a single mom while I was being treated. Very best of luck to you.
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- July 25, 2011 at 3:16 pm
I was treated with Temodar for a lung me ( which could not be surgically removed) and a possible node met( that could not be easily biopsied and later was discovered to not be involved). I had a full response and have been NED for 3 and a half years. Best of luck to you. I was raising my teen girls- now 19 and 21- as a single mom while I was being treated. Very best of luck to you.
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