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Dear Lord, Help Us Find A Cure. Time Is Not On Our Side.

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Subject: Dear Lord, Help us Find a Cure. Time is Not on Our Side.
Date: 08/17/2005
My name is Michael. I am the saxophonist for the band Sha Na Na.
My wife Amanda and I have been married for 6 years in May. In November of 2004,she was diagnosed with stage four Melanoma. In December she had Biochemo at John Wayne Cancer Institute in Santa Monica Ca. It did not work.Her Tumors grew 22%. She was going to try a Trial, Medarex. Her blood type was wrong. She was going to try AB007. She was unable to try due to her Brain Mets. She has been on Temodar and Taxol since January. The Taxol is not working anymore due to her body getting used to it. Her Dr. wants to try Thalidomide. Does anybody have any experience with this Therapy? Does anyone have ANY suggestions. We are desperate for help!!!!
Subject: Thalidimide
Date: 08/30/2005
I am so sorry to hear what your wife is going through...

My father has melanoma. He was in remission for about eight years and in March it was discovered again and has been spreading quickly, now turning into carcinoma meningitis...from March through June he was on thalidimide and temador and had a horrible allergic reaction to the thalidimide and almost died in June from it.

The thalidimide caused him intense pain as he could not go to the bathroom. It also weakened his lungs nad he ended up with pneumonia from it and nearly died. Once the docs figured out what was going on he was taken off the thalidimide...

I hope your wife will not go through the same thing, but just thought you should know of some possible side effects to be aware of...

Best of luck to you and her..

Beth
Subject: we Are in Similar Situations
Date: 09/12/2005
Sorry to hear about your wife.

My husband also did bio-chemo and it seemed to be working fine until an MRI showed brain mets. Our onc is recommending whole brain radiation and Taxol. You said your wife had Taxol and was building a resistance to it. Were her side effects from Taxol really bad? Do you know anything about Whole brain radiation?

You asked about Thalidomide. My husband has been on it since June and has not experienced any major side effects. He is very sluggish and has trouble when he doesn't get at least 8 hrs sleep at night. He feels tingling and slight numbness in his hands and feet. Other than that he hasn't had too many problems.

please respond if you can I'd like to compare notes. Thanks!
Caregiver
Caregiver
Teejayemm
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Subject: Whole Brain Radiation
Date: 09/27/2005
As we all know, each case is unique, but before going forward with Whole Brain Radiotherapy I would make sure you are well aware of the side effects (short and long term) and all other options (including other radiation treatments). My mother's experience with WBRT has not been good. From what I can tell, even a good outcome from WBRT is only marginally good (short term halt to cancer growth, maybe some shrinkage). I'm not saying don't do it, I am saying don't rush into it.

Best to all. Hang in there.

TJM
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