Brain Metastasis

Dobielover · New User Joined: 24 Jun 2009 Posts: 2 Location: Arizona

My first melanoma was in 2002. They found a mole on my left arm that was classified a Clark Level III. I had a sentinal node biopsey that was negative. I did everything right. All my follow-ups, etc. were on time and as required. Last year (2008), I felt some bites on my left arm below the elbow. One didn't itch. I had it biopsied and was told it was metastatic melanoma. I had a Pet Scan that was negative, the tumor was removed, and my lymph nodes were again clear. In February of this year, I had a follow-up Pet Scan. There was a tumor in my left and right lung and one in my right thigh muscle. I went through a round of IL-2. Was told last week it didn't work. An MRI done this week now shows 4 tumors in my brain. The largest is 7mm. I will have another MRI tomorrow to see if this is all of them or not. That will determine my radiation treatment. I am scared, but trying to remain hopeful. I'm in my early 50's and not ready to leave this earth. Anyone that can help with personal experiences or words of encouragement, treatments would be appreciated.

huber411 · New User Joined: 16 Jun 2009 Posts: 3

Sorry to hear about your metastasis. My dad, who is 53, is in a similar situation, so I hope telling his story will help you with your new diagnosis. I can tell you what he has been going through with his symptoms and such, and certain treatments that can, and should, be offered to you. He had a mole removed on his right upper arm ten years ago, which was melanoma. In March, he was complaining of headaches and extreme nausea and when he went to the hospital, they found his brain was hemorraging. With an MRI, doctors found 8 tumors, all over his brain, with a very large bleeding mass in his right temporal lobe. He had surgery to remove some of large tumor and obtain tissue to biopsy. He then went for 10 days of localized radiation, which really helped...the tumors stopped growing and one even shrunk! Steroids have been the most helpful drug, Dexatrin I think. He never did chemo, though. Chemo to the brain for treatment of melanoma does not come recommended, only a 5% chance of it doing anything to the cancer while still making you sick. Recently, the headaches came back and he needed to get a shunt placed in his head to relieve the backup of CSF, which we think was causing the pain.
He is STILL HERE, still doing things on his own, doing moderate exercises, and doing OK. The doctors don't want him to drive, but that's all he doesn't do. Still has his sense of humor, and his wits....so, chin up, Dobielover.

HaoleBoy · Senior User Joined: 19 Aug 2008 Posts: 108

Dobie, I'm sorry to hear about your recurrence... I really can't help here as I'm Stage IIA at the moment and this is well outside my personal experience... However, the Melanoma Patient Information Page and Catherine Poole's Melanoma International Foundation forums (fora ?) have alot of people and corporate experience dealing with both brain and lung mets...I posted the links below...

MPIP is not moderated but is a great site for finding and getting personal experiences, advice, tips etc from people literally walking down the same path as you on this melanoma journey... they also are responsive and caring .....

Catherine's site is professionally moderated and she also has a 1-800 hotline number to call... She is on top of the contemporary treatments, is well connected to the mel Centers of Excellence .... she is a melanoma patient advocate (and patient) who has dedicated her professional life to fighting this disease and helping mel patients....you have to register at MIF (like this site); at MPIP, you can just start posting without registering (more of a bulletin board than a forum IT wise)

Prayers and Blessings, Haole Boy (aka Bob) Stage IIA

http://www.mpip.org/bb/bbindex.html

http://forum.melanomaintl.org/toastforums/toast.asp

Dobielover · New User Joined: 24 Jun 2009 Posts: 2 Location: Arizona

Thank you for the information. I was at U of A today to do another MRI. The doctors say I have 6 tumors in my brain. The largest is 8.3mm. The next is the size of a pea. The rest are much much smaller. I am starting whole brain radiation on Monday. They might have to do targeted on the large one. With whole brain, they say I could have short term memory loss that won't return. Once that is done, then they want to start me on Chemo to take care of the tumors in my lungs and anywhere else this thing decides to pop up. I am feeling more hopeful after todays visit. I know I'm not going down without a fight..... for as long as God gives me the strength. I do get upset with the fact my early oncologist did not feel the need to do any type of treatment feeling that because my lymph nodes were clear I was OK. I found that mine just went straight to the bloodstream and through my body. Maybe if I had known more or insisted more I could have stopped this or something. This is a nasty cancer.

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