Dear Lynn: I would suggest that you contact oconolink site # attached, this
is the Univ. of Pa. that has done some wonderful things with brain tumors.
I am sure several of our Molers will get on line to help you out also; as
you have come to a very caring site, experienced in helping people through
their cancering journey. Hospice is also an excellent organization; but to
take someone's hope away is uncalled for. Too often we have witnessed
people who were told they only had a short time to live, and guess what?
Their still here; some right here on MOL. Why are they here? I believe
their determination, utilizing the power of the mind (hope) has definitely
played a large roll in their recovery. Eating properly and ridding
themselves of toxins along with humor helps one on the wellness road. If
we may be of further help, pls. contact us. Sincerely, Lillian
-----Original Message-----
From: DSENIA <DSENIA@aol.com>
To: mol-cancer@lists.meds.com <mol-cancer@lists.meds.com>
Date: Tuesday, May 05, 1998 12:51 AM
Subject: [MOL] advice
>
> Maybe someone can help -- My friend was just told that he has between 2
>weeks and 2 months to live. He's 41 and was diagnosed with melanoma 1 1/2
>years ago. He went through interferon theraphy for one year. 2 months
after
>the theraphy, he began having headaches and discovered that he had tumors
on
>his brain (as well as his lungs). He is not vomitting (which cannot be
>controlled). He was sent home today and hospice has been called. The
doctors
>at Harper Hospital in Detroit have told him there is nothing they can do.
>
> Any last minute miracles out there???? Thank you very much. Lynne
Senia
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I know that a few posts have come across that have asked for info on Thalidomide. I have spent s couple of hours talking to people and have gotten together some basic info and #'s to call. So if interested here goes....
1. There are currently 4 clinical studies that are going on. To find out more, NCI gave me the ph # for Entremed-a company that is working with Bristol Meyers on the studies. The general areas of the clinicals are: breast cancer, metastatic prostate,brain, and the 4th was Karposi's I believe. NCI only had 3 on their list, but got the 4th from Entremed. If you want more info on the specific studies you can call MARY @ 301-738-2490. I know the brain cancer study had a couple specific types they were studying but could not get all the info down quickly enough...sorry for not having specifics on each study. Mary, however, is very nice and can answer questions about the specific studies.
2. Even if you don't fit into the studies you can, with your oncologist's approval, request a "Single Patient" exemption from the FDA to allow use by an individual. You can contact the FDA-Dept of Oncology @ 301-594-2473. They can fax you the 21 pages that includes lots of info on Thalidomide and the form you and your dr. need to fill out. Once you get the form back to the FDA, you get an "IND" number .You can contact Bristol Meyers or one of the other suppliers directly to get the drug. The fax includes names and phone #'s of 3 such suppliers. Page 12 of the fax says that there is NO COST to you/insurance company for Thalidomide. Other costs - i.e. checkups, lab tests, etc. would be charged to insurance. There is a basic description of potential side effects.
Hope this gives a few resources for those who want to check into it further.
Lori & Scott
barry@minn.net
(On the Home Page of Medicine On Line (MOL) go to
Medline. This is a service of the National Library of Medicine which
provides literature searches in the medical journals. When you enter the
name of the cancer it will return articiles from the
last 3 years. The cancer links contains patient files. The Medicine
On Line Cancer Services are listed there including some quite good
international sites.)
