Re: [CML] Terry in Texas

Mon, 05 Dec 2005 00:24:30 -0800

It is never pointless to persue the SS issue. If you hire a lawyer they can only charge up to 25% of what you would receive and that is set by SS. Or you can do the appeal on your own. I hired a lawyer.
Suzan

[EMAIL PROTECTED] wrote:
well, the move is complete...Terry was completely worn out to the point that he came down with a respiratory illness....I knew it would happen, because he would just push & push.....Terry fell a few times during the move so that was quite upsetting.....as soon as we got done moving, he had a bone marrow biopsy on Nov 17th....the results are already back!!
 
Very good results, but we don't really know details till he sees the doc on Dec 5th.  Anyway, we are sure are much more hopeful.....it seems that he will need to stay at 600mg of Gleevec for the time being. 
 
oh, we got our letter from Novartis PAP...he has been approved for another year of Gleevec...yeah!!
 
heard from Social Security about disability/supplemental income....NO....well, now it means hiring an attorney or forget pursuing it...with the last decent results from the BMB, I guess it would be pointless....basically the letter stated that Terry was working, even if limited, and not at full capacity or able to earn the income he did before he got sick (half the income).  That is all fine & good, but he has a family & several children to support...go figure!!   Anyway, of course, he wants to work, be a contributing member to society, but where does one draw the line as to "how" sick they really are??   It is only more frustrating because we know folks on disability that are in much better shape physically than Terry, yet they receive benefits.
 
This still leaves us without health insurance or the possibility of Medicaid, etc for Terry....oh well
 
so, folks....we are one year since diagnosis, much more encouraged even though we too wonder if he will ever see remission.......
 
the only drawback from a good report is that it means that our chances of getting Terry into MD Anderson are now shot indefinitely unless he takes a turn for the worse again.  That is VERY disappointing...but I guess I would rather have Terry feeling better now, than worse just to see another, but better qualified doctor.   We had hoped that he could possibly try one of the other drugs and/or get on a drug trial of some type, plus see a CML specialist, if he were allowed into MD A.  oh well!!  
 
oh!! someone worried about Gleevec exposure during intercourse.....this is so highly unlikely...just like your spouse taking an antibiotic or some other drug.........I am extremely against typical allopathic drugs, (prefer homeopathics & herbs) and I am not at all concerned about exposure to Gleevec during intercourse!!!  
 
okay...that's the update....one year, hoping for many more to come!!!!   A big thank you to this group for helping us to get this far, answering the same questions over & over, and giving me an outlet to share a burden that our local friends are so scared of.
 
Lora

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