Re: Parotid Radiation (was - re: IL-2)

[Guest guest]

HI,

I'm considering IL-2 to raise cd4 count lowered by radiation I had for my parotids. It's been 6 months since the decline and the t's have not gone up since a 200+ decline and no increase in vl pressure,so i'll assume meds wouldn;t incr the t's bec my vl has been stable,20K, before and after the radiation. So, what is it now that is leading edge regarding IL-2 treatment regimen? Thanks,Luke

Luke,

Are you sure that your CD4 decline was the result of the radiation treatments? Did you have low level electron radiation? How many sessions? What was your CD4 count before and after the treatments? I'm possibly interested in going through this procedure but your message scares me a little. If your CD4 count went from 900 to 700, that might not be as bad as someone going from 300 to 100. Hey, and JB, if you don't mind saying, did you guys notice any CD4 decline as a result of these treatments?

Glenn

[Guest guest]

In a message dated 12/16/03 7:15:54 AM Central Standard Time, Get Well writes:

Luke,Are you sure that your CD4 decline was the result of the radiation treatments? Did you have low level electron radiation? How many sessions? What was your CD4 count before and after the treatments? I'm possibly interested in going through this procedure but your message scares me a little. If your CD4 count went from 900 to 700, that might not be as bad as someone going from 300 to 100. Hey, and JB, if you don't mind saying, did you guys notice any CD4 decline as a result of these treatments?Glenn

I think you should expect some decrease. Most people I talked to had a decrease of 10-20 % after 16 sessions. I do not know what mine was. I did not want to deal with finding out (yes, I like denial also!). When I started my sessions with Dr Gordon, my T cells were at 260 and my viral load at 35,000, and I was multi drug resistant. I decided I was going to get on T-20 when I came back home from Los Angeles after the radiation. So I did (a month now).

Everyone tells me my face looks more normal (thinner on the sides, which is good). My side burns still do not grow, but that is OK with me.

I am exploring low dose IL-2 also after my birthday in February and after being on T-20 for 3 months. I have friends who have done that after T-20 with great results. Yes, there are flu like symptoms, but you can pre-treat for them. There are no data on this approach but that has never stopped me!

There was someone on this list that sent me a great summary of a low dose IL-2 protocol but I misplaced it.

By the way, I paid nothing for the radiation. But I got my Medicare bill and it was up to $20,000 ! Dr Gordon and her staff take care of reimbursement and do not charge you any copay or anything if you have Medicare, Medicaid or insurance.

VergelDirector, Program for Wellness Restoration (PoWeR)An all volunteer non profit 501 © 3 organization.www.powerusa.orgSend an email to lipodystrophy-subscribe to join our free listserve!Subscribe to our newsletter PoWeRHealthReview by emailing Editor@...

[Guest guest]

In a message dated 12/16/03 8:42:44 AM Eastern Standard Time, PoWeRTX writes:

By the way, I paid nothing for the radiation. But I got my Medicare bill and it was up to $20,000 ! Dr Gordon and her staff take care of reimbursement and do not charge you any copay or anything if you have Medicare, Medicaid or insurance.

How do they get around the cosmetic argument? What do they use as a basis for medical necessity? Has anyone ever heard of an HMO covering this?

[Guest guest]

In a message dated 12/16/03 9:28:18 AM Pacific Standard Time, Get Well writes:

By the way, I paid nothing for the radiation. But I got my Medicare bill and it was up to $20,000 ! Dr Gordon and her staff take care of reimbursement and do not charge you any copay or anything if you have Medicare, Medicaid or insurance.

How do they get around the cosmetic argument? What do they use as a basis for medical necessity? Has anyone ever heard of an HMO covering this?

I know she was happy to hear that it hurt when I chew. I think the CPT code has something to do with pain, not cosmetic.

Vergel

www.powerusa.org