Re: [MOL] Fwd: Thalidomide - To Bess [00990] Medicine On Line

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Re: [MOL] Fwd: Thalidomide - To Bess

In a message dated 01/30/2000 2:26:34 PM Eastern Standard Time, 
BesTom@AOL.COM writes:

> Dear Chris:
>       If you don't mind my asking, what kind of cancer did/does your father 
>  have, with or without mets, what chemo and other treatments did he do 
> starting thalidomide?  And how long has he taken the thalidomide?  Also 
> where  is he being treated?
    Don't mind at all. NSCLC right lung with mets to left and in between 
them. After surgery on left lung, he was on taxoltere w/ carboplatin for 6 
months (very hard time with that - we prayed that he would survive the chemo 
let alone the damned cancer!) He is being treated at St. Luke's Hospital 
(teaching hosp) in Fountain Hill (Bethlehem) PA w/ Dr. Anna Niewarowska (from 
Poland).  Though I don't care a whit for her bedside manner, I must admit she 
has done an incredible job.  And part of the problem is my father himself - 
instructing her not to speak with his family, even his wife!  Though Va. is 
present at every visit, he gets angry when she speaks up and squeals to the 
doctor things that he won't tell her or instructions that he has violated.

>A leading AIDS onc I know from my medical writing had suggested thalidomide 
when I first spoke to him when Tom was diagnosed back in June.  >  But since 
AIDS is borne by blood, it probably works best there.  Our onc, as I 
mentioned, is willing to give us thalidomide if we want > but >  doesn't have 
much confidence in it and also we would have to pay for it >  ourselves since 
it isn't approved for lung use per se.  Our insurance is SO >  
expensive-BlueCross Deluxe PPO but so difficult about paying every little >  
    My Dad's thalidomide pills are $500-$700 for 20 days, but medicare covers 
all but 20%.  They also have some type of BC/BS insurance (they are retired).
    I certainly cannot recommend that you do or don't push for thalidomide. 
But I can tell you it has helped with my father - IN CONJUCTION with 
radiation treatments.  Whether it will continue to help or not, I don't know. 
 My sister's physician told her that he feels thalidomide is "excellent" 
because it can break through the blood/brain barrier and attack any cancer 
that might TRY to grow there too.
    I wish I could be of more help, but as my family doesn't share much 
medical info with me, I can only tell you a little.  But if looks are any 
indication, I would say my father seems better now than he was 6 months - 1 
year *before* he was dx.  I remember being concerned that his skin was 
becoming pale and pasty during that time.  He seemed labored all the time too 
- and fatigued easily.  His voice was extremely hoarse, then after the scope 
was lost altogether.  The surgeon said that it would not come back because 
the tumor had attacked the nerve.  Well, it DID come back - on XMas Day 1998! 
Now he walks to breakfast every morning, reads his paper again, does the 
crosswords every day, and cooks alot! (He LOVES that.)
    Honestly Bess, on Thanksgiving Day 1998 (chemo time) I did not believe I 
would still have my father that Christmas.  It was THAT bad!  Now it's like a 
different man.

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