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Author Topic: Does anyone know of a situation like this?  (Read 2672 times)

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Offline readytofight

  • New Member
  • Posts: 1
Does anyone know of a situation like this?
« on: February 01, 2008, 10:59:14 AM »
Im sorry if my first post looks like a novel. Ill try to curb it some.
9 months ago I got hit with a double whammy. I  found out that I had AIDS and cancer. I felt fine and only found out after I developed what turned out to be a KS lesion in upper palate of mouth.  Biopsy came back poz for KS. Got Hiv test that came back poz with a cd4 count of 147. VL 77,000. I found a Dr I felt confident with who immediately put me on Atripla and scheduled Oncologist. I had all the procedures , upper / lower, ect to look for internal lesions. Two were found in lower GI track and one small spot appeared on lower leg. 4 total. They started me on Doxil to get the KS under control while the Meds started working. Atripla didnt work for me. Sick, dizzy, ect.. I was switched to Viramune and Truvada with a multi vit. Other than the bowels always being aggravated I have handled this combo pretty well. I had 6 treatments of Doxil which I have dealt with . I returned for another round of procedures, colonoscopy, upper GI x rays ect.. and nothing new showed up. I was told the two lesions in lower GI track had faded and healed almost completely.The lesion in mouth has faded a lot 80 - 90%  but is still slightly visibile.The small spot on leg remains but could just be scarred spot that may take a long time to go away. I felt I needed a break from Chemo. Oncologist and Dr disagreed and wanted me to continue with more rounds of Doxil since my blood work looked good.
No one can give me an answer as to how much chemo and when it is safe to break from it. I went against their advice and took a month off during the holidays. I was told that I was at more risk of developing Lymphoma since I already have KS and that I shouldnt break from the chemo just yet. The plan I guess was to try to knock out the KS which is my Doctors main concern and let the meds start working and hopefully the meds will eventually keep the KS controllable. I developed a couple of very small red spots on upper leg , smaller than a dime. It scared me  and I cut my break short by a few weeks and started chemo again.  So far have had 2 more rounds.. 8 total. I have had blood work 6 times since diagnosed and this is how things look.
April    07  cd4 147   vl  77,000
June   07  cd4 344   vl   3,700 
Aug    07  cd4 290   vl     408
Oct    07  cd4 297   vl    108
Dec    07  cd4 411   vl  undetectible
 I will be getting blood work this week for Feb 08.The meds seem to have been working but of course they are toxic and im already having some issues. Ive always been slender and in shape,non smoker, i eat healty and get plenty of rest and I exercise.  Ive maintained my perfect weight through out all of this but my cholestrol has gone up to 225 and my blood pressure, which was also always normal ,has gone up slightly 140 over 90. For the last 3 months I have had terrible aching in my lower legs and sometimes hobble around until the aleve or advil kick in. Just this last month I have developed a fluttering in my heart. I have read and have been told by my Dr as well that it could be a result of the Doxil. Cardiac Toxicity can occur as cumulative doses reach 550 mg . Only so much Doxil one can handle I suppose and everyone is different but I am getting close to that limit. My doctor ordered an EKG and he didnt like what he saw so I am scheduled to pick up a heart monitor to wear for 24 hours and he scheduled an echocardiogram.The results from all of this will be reviewed by a cardiologist in early Mid March. Atrial fibrillation is what it appears to be. I wont have any answers until  I meet with Cardiologist. Is it a concern?  yes. Could it be temporary as a result of the meds and the chemo? yes just the  chemo? yes
 Is it a pre existing condition that never showed up and the chemo brought it out? Could be. Could it be serious and could the Doxil have damaged my heart? Possibly .
 I have to wait. I feel it fluttering and it does bother me but im not in any pain so I have to just wait for results .
 Meanwhile I had another chemo scheduled yesterday.. (every 3 weeks) I was to make the oncologist aware of the EKG and let her decide to hold off on chemo.,. continue with chemo.. space the chemo farther apart?  Well I cancelled and will reschedule with her. I dont think I want any more chemo until I meet with the Cardiologist. Now..here I am. Am I putting myself at risk of having the KS flair back up worse than before? I doubt my cd4 is over 500 since the chemo has been keeping it down. If it does come back and I have reached my limit for Doxil seeing it has more than likely caused this issue with my heart well what next? Taxol which is much stronger and harder than Doxil. Do I wait? If KS gets worse do I fight it with chemo and risk damage to my heart?  If the KS goes crazy internally then its a much harder thing to beat and taxol will be the only option . I honestly thought the KS would have been long wiped out after 8 rounds . Although I only had 4- 5 lesions total it was slow to respond to the Doxil. How do you know when its safe to come off the chemo? I am using my best judgment right now and waiting until mid March when I see Cardiologist. I dont sit around or get depressed or worry with what if's as i have made it sound in this post. I try to stay very upbeat but it has become a concern not knowing for certain if my decisions are the right ones. In the mean time my Dr has put me on a blood pressure med beta blocker  also another med for the cholestrol to be safe. I didnt want to start on these but I did. Anyone had an experience close to this? Any feedback?  Thanks to all who took the time to read this rambling.. I wish you all well and send out good vibes to everyone !

Offline sanitex

  • Member
  • Posts: 447
Re: Does anyone know of a situation like this?
« Reply #1 on: March 06, 2008, 12:41:25 AM »
h! am sanitex,i've read your article but my advice to you is  pls go to this webside.(lactobacteria .com)but first of all use google to search it ,when you write lactobateria in to google it'll show you this site ,then click on the web (YOGURT)then try to read it very welll it'll help a lot and show it to you ID doc .thank you'll be heal with prayer,you can read my forum from question about treatment & side efects.
27/12/07 cd4 20 vl 1m
10/4 /08 cd4 86 vl 63
1/7/08  cd4 186 vl undetectable
16/10/08 cd4 196 vl undet
23/1/09 cd4 248 vl un
10/9/11 cd4 418 vl <40 %22
13/12/11 cd4 410 vl undet 23%
24/2/12 cd4 545 vl undet 26%
on 22/2/12 change truvada to Recovir-em.10/9/11 cd4 418 vl <40 %22
7/7/12 cd4 359 vl <40 22%
23/8/12 cd4 400 vl <40 23%,
testosterone test 7.5 ng/ml and
thyroid (TSH)1.32 ml.
13/12/2012 cd4 523 24% vl <40
18/3/2013 cd4  513  23% vl <40
03/8/2013 cd4 429 22% vl <40
13/11/2013 cd4 455 23% vl <40
Anti-HBs test (quantitative ) Anti-HBs positive
Titer 16.95 mlu/ml <10.00
22/3/14 cd4 396 vl <40 24%
24/7/14 tevir
24/9/14 cd4 517 vl <40 22%
16/3/15 cd4 545 vl  85 24%
12/4/16 cd4 626 vl <40 25%
16/8/16 cd4 396 vl <40 27% change viramune/recovir-em 22/7

Offline BT65

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  • Member
  • Posts: 10,764
Re: Does anyone know of a situation like this?
« Reply #2 on: March 06, 2008, 06:11:06 AM »
OK, I don't know what eating yogurt would have to do with anything.

Ready, I have no experience in your sitaution.  I have two valves in my heart that are prolapsed, and my heart races/pounds sometimes.  I can't go on any meds for that though, because I run a low bp, and the meds always bottom it (bp) out. 

Just hang in there, sweetie.  We're here.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline J.R.E.

  • Member
  • Posts: 7,498
  • Joined Dec-2003 Living positive, since 1985.
Re: Does anyone know of a situation like this?
« Reply #3 on: March 06, 2008, 07:57:17 PM »

Welcome to the site.  Unfortunatley I also can't give you any advice on this, But hang in there, I am sure someone will come along and give you some answers.

Take care of yourself-----Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg






Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 9/16/16,  t-cells are at 501,   Viral load remains <40

Current % is at 12%

 65 years young.

Offline Jeff G

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  • Member
  • Posts: 17,061
  • How am I doing Beren ?
Re: Does anyone know of a situation like this?
« Reply #4 on: March 08, 2008, 12:40:50 AM »
 It sounds to me like you have a complicated situation to deal with. If there is any advice to be found in anything I say to you its simply to get the best medical treatment and advice from qualified doctors and may be a second opinion if you are unsure. That being said I can only share my experience with KS. Please keep in mind that my case seems very diffrent than yours.

 I have had KS topically on my legs . I was treated with Doxil and taxol and received much more than the lifetime recommended doses. I never responded to systemic Chemo treatment .
 At one point I took a drug holiday off my HIV meds. and two Ks lesions on my legs grew to such a size that they used radiation treatments ,and that worked very nicely on those two spots and they never came back.
 After starting back on my HIV meds, getting my cd4 count up, my viral load down I have only had to do a little maintenance from time to time. If I ever see a leasion starting I have them frozen off with liquid nitrogen before they grow to large, and in my case it doesn't even leave a scar after it heals.
 I have never had KS in my mouth or internally. I have read that doxil and taxol works well for some people and some like me don't see any reduction of lesions

 I'm not sure if I have been able to help you with this . Good luck and feel free to PM me if I can explain anthing more clearly . As you can see I'm not as eloquent as most people in this forum.   
« Last Edit: March 08, 2008, 12:42:57 AM by jg1962 »
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