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Author Topic: Can't seem to win lately  (Read 3745 times)

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Offline poznlongbeach

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  • Posts: 13
Can't seem to win lately
« on: July 18, 2008, 02:02:54 PM »
Hey Everyone-

Can't seem to win lately. Got some bad news this week. As some of you might remember I had to start chemo ( Doxil) again a few months ago, my KS came back. My oncologist scheduled me for a echo cardiogram on Monday and it came back that I now have cardiac toxicity. So we have to stop chemo. Since my next appointment now with my oncologist is not until the 12th of August I did a stupid thing and looked up cardiac toxicity on the internet. It says that I can never do chemo again because of the damage to the heart. Is this true?? Now what do I do about my KS?? Last time I had KS which was in 2006 it got so bad that it hit my lymphatic system before we were able to start chemo. I'm afraid this might happen again and if it does am I screwed??
Also the new meds are not working as well as we hoped. I'm on Atripla and Isentress and although my Tcells are up a bit (301) my viral load is still going up as well (2500) We just did a new pheno type resistance test but I will not know the results of that test until my next ID appointment on the 13th of August.
I just feel like no matter what I do these days nothing is going my way.
BTW.... I do not do drugs.....I do not drink.... I do not smoke.....I do take my meds everyday....I eat right.......I get a good nights sleep........
Yes I'm on SSD wish I could work but I can't.
So just needed to get this of my chest....maybe some of you have been here before and can help me get through this. You guys and gals have always helped me in the past so really need it now.
Thanks for reading......


My life has been an incredible journey that has been nothing less than one significant truth unfolding onto another. There are no words to describe all I have come to know, and have been guided to know. I have learned that if I humble myself and ask to receive, "life" will provide me with the people and things I need precisely when needed, and usually abundantly more than I am prepared to receive.

Offline BT65

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Re: Can't seem to win lately
« Reply #1 on: July 18, 2008, 08:13:16 PM »
Tony, I don't have any knowledge regarding this type of situation; I just wanted you to know I'm thinking of you.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline AlanBama

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Re: Can't seem to win lately
« Reply #2 on: July 21, 2008, 01:57:57 PM »

I don't know anything about cardiac toxicity issues....I do know about bacterial endocarditis though, so I sympathize with you.

Keeping you in my prayers.....let us know what you find out.

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline aztecan

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  • Posts: 5,517
  • 32 years positive, 60 years a pain in the butt
Re: Can't seem to win lately
« Reply #3 on: July 22, 2008, 12:39:24 AM »
Hey Tony,

I know nothing about cardiac toxicity, but I wonder whether this rules out all chemo or just some of it?

As far as the meds go, when the phenotype comes back I wouldn't be surprised to find you may need to switch meds.

Sustiva, which is part of Atripla, is one of those meds I have noticed seem to fail folks, even the most adherent. Not everyone, mind you, but quite a few I have known.

Do you know if you have resistance to other meds?

When you had KS before, were your T-cells low? I just wonder because, although not necessary for the development of KS, many I have known with KS developed it when their T-cells were low.

I know, here I am asking too many questions. I just wish there were something concrete I could offer you, which is why I ask.

I hope you get good news when you see the docs next month. I will be sending copious amounts of healing and positive energy your way.


"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Robert

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  • Posts: 2,658
Re: Can't seem to win lately
« Reply #4 on: July 22, 2008, 01:44:49 AM »
Hi Tony.

I can't help you much.  I know what you mean though about looking things up on the internet.  Too much knowledge and now too much stress.

I'll keep my fingers crossed for you.



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