The following lipodystrophy poll is now closed.  Here are the
final results:


POLL QUESTION: Should the makers of Zerit (D4T)
Bristol-Myers Squibb (www.bms.com) be
required by the FDA to mention the
higher risk for lipoatrophy and facial
wasting in Zerit's product insert?

CHOICES AND RESULTS
- No, 0 votes, 0.00%
- We do not know if Zerit causes that problem, 0 votes, 0.00%
- I do not know, 0 votes, 0.00%
- Yes, 11 votes, 100.00%



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I would have to say that HPV is such a vital concern for men and women
living with HIV, that although it is "off topic," any opportunity to
make people think of this is warranted.  IMHO, not enough physicians
are paying attention to anal cancer.  I have little to add to Jeff's
excellent note.

I would like to share my perspective as a pathologist.
PAP smears are probably helpful, but not enough.  The standards for
diagnosis are all really designed for uterine cervix, and there are 50
years of good data as background.  Changes seen in the anus may not be
identical, and interpretations are difficult.
Actual examination of the anus by a proctologist may be more effective
than general screening.

In any case, you can't just wait for problems.  Each of us should
discuss this with his/her HIV specialist, and arrange for periodic
check ups.

JB


On Friday, Feb 28, 2003, at 10:47 US/Eastern,
lipodystrophy@yahoogroups.com wrote:

> I had one done by Dr Ford Kinder in Miami. He went to a two day
> seminar on
> this topic. The main problem is that more than 60 % of the time the
> results
> come back inconclusive. And most of us are poz to HPV, which makes us
> have a
> much greater risk of anal cancer. Jeff Taylor is sitting in a NHI
> committee
> that deals with research in this area (Jeff, are you there? could you
> add
> anything else for us?)

This study did not include HIV poz men but only older men with visceral fat
deposits. Because of this, it is very hard for me to even consider the fact that
their findings might apply to HIV drug related fat problems. Still, one very
nice avenue for a new study where only hiv poz patients (with aids med) would be
included. This has yet to be done; knowing the amount of money that poz people
would invest in such a therapy, one wonders why the big Drug companies are not
doing such research.

Steve

Wow, the last posting on oxandrolone and GH is amazing. I feel like I am living
on another planet since GH will never be prescribed to me. All the deca that was
prescribed was done quite illegally threw the son of a doctor I know, otherwise
I would have never even had been able to try deca.

Reading all these wonderful details on GH just makes me wonder how you poeple
even come close to having someone actually prescribe that stuff. Living in
Montreal, I can assure you that in order to have the tiny bit of steroids
prescribed, one has to be on his death bed.

Still, thanks you for that very informative info.

PS: J of Obesity study : I cannot find this journal or the article that was
mentioned. If you could provide the tile I would gladly read the article with my
epidmiologist brain.

Steve

Thanks for this good information. While the proper course of treatment for
low-grade lesions might be questionable, no one should ever use that as an
excuse to avoid follow-up examinations. It needs to be monitored! This would
include anyone who has ever had surgery for anal warts.

There is an anal clinic in Boston where they specialize in this. They are
currently seeing me every year. Each visit includes an anal pap smear and an
anal colposcopy which is recorded on videotape and kept as a reference to
compare with future examinations.

Here is a website for the clinic:
http://home.caregroup.org/templatesnew/links/cat_out.asp?pageid=4042

Here is a brief Q & A from one of the doctors at the clinic:
http://www.neaetc.org/qa/Answers/qa_answer_4.20.01.htm

I apologize for my continuation of this subject and will now try to stick with
"Lipodystrophy", which I am mostly interested in.

Glenn


In a message dated 2/27/2003 3:01:19 PM Eastern Standard Time, ROLYATFFEJ
writes:

> Yes, HPV is a huge problem for all gay men--especially those of us with HIV
> in whom it can progress much more quickly into cancer.  Doctors with large
> gay and HIV+ patient loads have known for years that they can do an anal pap
> smear, and that if they do, they're likely to find pre-cancerous lesions.
> The question is: what do you do about them?  There is no established standard
> of care for treating lesions, especially low grade ones, once they've been
> detected.  Many low grade lesions spontaneously go away without ever
> progressing, and even high grade ones often just sit there for years without
> progressing or causing problems.  So the dilemma for physicians is whether to
> aggressively treat them topically with Aldara or 5FU, burn them off with
> acids like BCA or podophyllin, or employ more drastic slash-and-burn
> techniques like surgery using electro-cautery, excision, or laser.  These
> treatments range from messy and uncomfortable to excruciatingly painful and
> debilitating with long recovery periods.  So naturally physicians are
> unwilling to subject patients to these treatments without some assurance of
> their necessity and efficacy.
>
> The AIDS Malignancy Consortium, to which I am a new community representative,
> is the NIH group that splintered off from the ACTG and is funded research
> AIDS-associated cancers, including HPV.  They are too small to do the large
> cohort studies needed to determine rates of occurrence and disease
> progression.  Currently they are doing small pilot studies of promising
> treatments, including a vaccine study spearheaded by Joel Palefsky--arguably
> the leading expert on HPV disease in men.  What is needed, IMHO, is
> collaboration with larger NIH funded research groups like the ACTG or CPCRA
> to determine rates of incidence & disease progression, and to screen the
> large numbers of patients needed to obtain subjects for treatment trials.
>
> In the meantime, it's up to us as patients to insist that our primary care
> physicians and proctologists (finding an HIV-savvy proctologist is the
> biggest problem for many of us--I had to drive 120 mi to LA to find one) and
> insisting that they look for the problem in the first place--using pap smears
> or acetic acid staining.  Once found, we need to work with them on treating
> them using the currently available options.  Many proctologists wait until
> there is a frank visible lesion or wart to remove before using the removal
> technique they're trained to do (and just as importantly--get reimbursed
> for.)
>
> Networking with each other about savvy treating physicians and treatments
> that work is key, given the dearth of received knowledge on the subject.  To
> share my experience, I burned through three different so-called specialists
> who diagnosed my in situ squamous cell carcinoma, but failed to treat
> it--preferring to "wait and see."  I finally located a proctologist who used
> laser, which is less traumatic and heals faster, who not only removed the
> cancerous lesion, but at the same time used laser ablation to resurface the
> entire perianal area to eliminate any other possible pre-cancerous growths.
> This drastically reduced the rate of recurrences.  On my regular checkups, if
> anything new is detected, he typically applies podophyllin not only to the
> lesion or condyloma, but again to the entire perianal area to ablate away any
> low grade cells that may be lurking.  This seems to work for me, but like
> many HIV+ men  I'm stuck with a lifetime of having to have regular checkups
> and removal.
>
> I realize this raises a lot more questions than it answers, but I hope it
> helps.  In addition to treatment advocacy, I think we should lobby the newly
> formed Academy of HIV Medicine and the GLMA to include anal HPV lesion
> monitoring as standard of care for all sexually active gay men--especially
> those who are HIV+.  If there are any list members who work
> with either of
> these groups, perhaps they could help us advocate for this.
>
> Jeff Taylor

Nelson et al--

Yes, HPV is a huge problem for all gay men--especially those of us with HIV
in whom it can progress much more quickly into cancer.  Doctors with large
gay and HIV+ patient loads have known for years that they can do an anal pap
smear, and that if they do, they're likely to find pre-cancerous lesions.
The question is: what do you do about them?  There is no established standard
of care for treating lesions, especially low grade ones, once they've been
detected.  Many low grade lesions spontaneously go away without ever
progressing, and even high grade ones often just sit there for years without
progressing or causing problems.  So the dilemma for physicians is whether to
aggressively treat them topically with Aldara or 5FU, burn them off with
acids like BCA or podophyllin, or employ more drastic slash-and-burn
techniques like surgery using electro-cautery, excision, or laser.  These
treatments range from messy and uncomfortable to excruciatingly painful and
debilitating with long recovery periods.  So naturally physicians are
unwilling to subject patients to these treatments without some assurance of
their necessity and efficacy.

The AIDS Malignancy Consortium, to which I am a new community representative,
is the NIH group that splintered off from the ACTG and is funded research
AIDS-associated cancers, including HPV.  They are too small to do the large
cohort studies needed to determine rates of occurrence and disease
progression.  Currently they are doing small pilot studies of promising
treatments, including a vaccine study spearheaded by Joel Palefsky--arguably
the leading expert on HPV disease in men.  What is needed, IMHO, is
collaboration with larger NIH funded research groups like the ACTG or CPCRA
to determine rates of incidence & disease progression, and to screen the
large numbers of patients needed to obtain subjects for treatment trials.

In the meantime, it's up to us as patients to insist that our primary care
physicians and proctologists (finding an HIV-savvy proctologist is the
biggest problem for many of us--I had to drive 120 mi to LA to find one) and
insisting that they look for the problem in the first place--using pap smears
or acetic acid staining.  Once found, we need to work with them on treating
them using the currently available options.  Many proctologists wait until
there is a frank visible lesion or wart to remove before using the removal
technique they're trained to do (and just as importantly--get reimbursed
for.)

Networking with each other about savvy treating physicians and treatments
that work is key, given the dearth of received knowledge on the subject.  To
share my experience, I burned through three different so-called specialists
who diagnosed my in situ squamous cell carcinoma, but failed to treat
it--preferring to "wait and see."  I finally located a proctologist who used
laser, which is less traumatic and heals faster, who not only removed the
cancerous lesion, but at the same time used laser ablation to resurface the
entire perianal area to eliminate any other possible pre-cancerous growths.
This drastically reduced the rate of recurrences.  On my regular checkups, if
anything new is detected, he typically applies podophyllin not only to the
lesion or condyloma, but again to the entire perianal area to ablate away any
low grade cells that may be lurking.  This seems to work for me, but like
many HIV+ men  I'm stuck with a lifetime of having to have regular checkups
and removal.

I realize this raises a lot more questions than it answers, but I hope it
helps.  In addition to treatment advocacy, I think we should lobby the newly
formed Academy of HIV Medicine and the GLMA to include anal HPV lesion
monitoring as standard of care for all sexually active gay men--especially
those who are HIV+.  If there are any list members who work with either of
these groups, perhaps they could help us advocate for this.

Jeff Taylor

----- Original Message -----

From: powertx@...

To: getwell@...

Cc: lipodystrophy@yahoogroups.com ; rolyatffej@...

Sent: Thursday, February 27, 2003 8:57 AM

Subject: Re: [lipodystrophy] Off Topic: Anal Pap smears urged for gay men

In a message dated 2/27/03 7:02:02 AM Central Standard Time, GetWell@... writes:

Yahoo! News - Anal Pap smears urged for gay men
http://story.news.yahoo.com/news?tmpl=story2&u=/po/20030226/co_po/anal_pap_s
mears_urged_for_gay_men

--- In lipodystrophy@yahoogroups.com, "doug.neville"
<doug.neville@a...> wrote:
> After having high blood pressure (140/106) for several months, I
finally agreed to taking medication to help.  My doc prescribed
Maxzide and within 3 days I was feeling punch drunk and stupid.  He's
switched me off of that to Hydrochlorothiazide instead.  My
question:  I recently read about blood pressure lowering effects of
Avandia, but my doc dismissed it, saying that the numbers and
impressions coming out of Boston don't support it.
>
> What are you guys/gals doing about high blood pressure?  Are there
alternatives to Hydrochlorothiazide?

Hydrochlorothiazide is pretty harmless. I wouldn't worry too much
about it. It may end up not being enough by itself though.  In my
case, I take Moexipril (Univasc) which is an ACE inhibitor, as well
as Hydrochlorothiazide.

More importantly though, before you try all these drugs, have you had
any tests done to determine if there is some root cause for your
hypertension?  24-Hour urine tests are pretty common as a preliminary
test.

Glenn

Lars here, from Sydney.
I am considering going on Oxandrin to combat lipo... I have "road
map veins" on my legs. I think my abs are being pushed out from the
inside, by visceral, not subcutaneous fat.
I have been told that maintenance dose of Oxandrin can keep the lipo
at bay. Who uses it and how much?
Thanks!
L in S

On Wednesday, Feb 26, 2003, at 10:41 US/Eastern,
lipodystrophy@yahoogroups.com wrote:

>  My question:  I recently read about blood pressure lowering effects
> of Avandia, but my doc dismissed it, saying that the numbers and
> impressions coming out of Boston don't support it.
>

The use of Avandia for insulin insensitivity/lipo problems in HIV is
early in development, and while promising, there are no definitive
answers, and more than a few negative reports.  Your BP is high, and
treating with HCTZ is generally safe, effective, and cheap.

JB

On Wednesday, Feb 26, 2003, at 10:41 US/Eastern,
lipodystrophy@yahoogroups.com wrote:

>  It's also the dead of winter in
> Chicago and that could be contributing to it, but then again maybe not.
> I've been reading about mitochondrial toxicity and the effects it has
> on
> energy production, but also read that the drugs I'm taking aren't major
> offenders.
>

Carl,
There are so many reasons for the constellations of things you describe
that I would not rush to the drugs as the reason.  I would, though,
discuss this at length with your doctor.  He/she needs to be aware of
the problem so that you can begin to find a solution.

JB

Just for anecdotal purposes, could anyone tell me if they
were regular exercisers before starting HAART? And if you remained
an exerciser since, how you view the intensity of your lipodystrophy.
Feel free to email directly.
Thanks
Joey