Guest guest Posted October 13, 2006 Report Share Posted October 13, 2006 This is an interesting point, but it is also an open question just how representative "pozhealth" is of the HIV+ community as a whole. Although there are some people (such as myself perhaps) who fall inot rhe category of being the "worried well", I suspect that a lot of people seek out newsgroups like pozhealth because they are experienceing a lot of very serious, health problems and side effects in the first place. There are many people with HIV who are either not on any medication at all, or are on meds but have never expertienced any side effects and are not interested in keeping abreast of this kind of info...those people are in most cases not going to subscribe to a newsgroup like this. "With the Pozhealth group now totaling a little more than 2,000 members, that means one in 370 of us has disclosed having anal cancer. Perhaps the number is higher. That's a pretty high incidence for one type of cancer in a particular community." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2006 Report Share Posted October 13, 2006 The poll was never intended to be scientific, but rather to raise awareness. I realize that the Pozhealth group may not be representative of the HIV+ community. We probably include a disproportionate share of long-term survivors and people on disability who have time to read and respond to posts. While we know that anal dysplasia and anal cancer are more prevalent among HIV+ than in HIV- gay men, it is not clear that there is any correlation between HPV disease and the overall health of HIV+ men, nor is it clear that there is any correlation with CD4 counts. It is likely that there is some correlation between severity of HPV disease and length of HIV infection. In any event, the rates of anal cancer among HIV- gay men are equivalent to the rates of cervical cancer in women before the pap smear became routine, and we know that cancer rates of HIV+ men are considerably higher. If cervical cancer rates of 40/100,000 were enough to justify the introduction of routine pap smears in women, then the higher rates of anal cancer among HIV+ gay men ought to justify screening and treatment of high grade anal dysplasia. Cervical cancer rates in the US have been reduced by about 80% since the introduction of the cervical pap smear in the 1940s, with the majority of the remaining cases occuring among women who have never had a pap smear or who haven't had one recently. With screening and treatment, most cases of anal cancer could be prevented as well. Rhino88 wrote: This is an interesting point, but it is also an open question just how representative "pozhealth" is of the HIV+ community as a whole. Although there are some people (such as myself perhaps) who fall inot rhe category of being the "worried well", I suspect that a lot of people seek out newsgroups like pozhealth because they are experienceing a lot of very serious, health problems and side effects in the first place. There are many people with HIV who are either not on any medication at all, or are on meds but have never expertienced any side effects and are not interested in keeping abreast of this kind of info...those people are in most cases not going to subscribe to a newsgroup like this. "With the Pozhealth group now totaling a little more than 2,000 members, that means one in 370 of us has disclosed having anal cancer. Perhaps the number is higher. That's a pretty high incidence for one type of cancer in a particular community." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 I hope everything is easily fixable for you. News for everyone. I just had a conversation with my Doctor regarding HPV (Human Papilloma Virus) and anal cancer. He agrees with something I was not willing to say before checking with him. Gardasil is the new HPV vaccine which is proven to prevent HPV infection. Gardasil is not proven to be an effective therapeutic vaccine, one that helps your immune system control HPV after you are infected and the safety and effectiveness of Gardasil in HIV-positive people have not been determined. Similarly, the effectiveness of Gardasil as a preventive vaccine against cancer and pre-cancerous lesions of the anus, in HIV-negative or HIV-positive men or women, has not been determined. Having written all of these disclaimers, my Doctor is recommending the series of three Gardasil vaccinations for all of his patients. The chief drawback to the Gardasil vaccination is the price at $120 per injection for a total of $360. There are no reasons to believe Gardasil will not act as a therapeutic vaccine, other than the chance that it might not for unknown reasons. And there are many reasons to believe that it should be able to act as a therapeutic vaccine after exposure. HPV infection is nearly universal. Some become infected at birth and some studies show that 40% of HPV infections occur within the first 16 months of sexual activity. Some may say they or their Doctor disagree with this - and that's fine. That's what makes the world interesting and diverse. Everyone gets make their own choices when they play "You Bet Your Life". For me, not getting the vaccine sounds too risky. The current incidence of anal cancer in gay men is 40/100,000 - which is exactly the same incidence of HPV related cervical cancer in women, and hardly surprising. Among HIV+ men, the incidence of anal cancer is nearly doubled at 70/100,000. This number is expected to grow as the HIV+ population lives longer. My Doctor also recommends annual High Resolution Anoscopy with acetic acid contrast, rather than PAP smears or PCR fecal tests. He uses the newer infrared coagulation tool for treating suspected HPV dysplasia after taking a biopsy. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=15156490 & dopt=Abstract While 7 out of 10,000 sounds like a small number, the chance of my home burning down is also small - but I still pay for fire insurance. >> I just got confirmation from my doctors at the VA hospital here in Atlanta> that I have anal cancer. > > In August, I noticed some blood on the toilet paper and then some minor> tinting of water in the commode. > > I went in to see my HIV doctor, who did a digital rectal exam and found that> there was something abnormal > in my rectum. He put in a consult with the GI doctor who did an Endoscopy> about 3 weeks later. He found > the lesion about the size of a quarter and performed a biopsy of the site. > The test results came back as > "Squamous Cell Carcinoma" in my rectum. > > Over the last 3 weeks I have had an Ultra Sound, CT Scan and a PET/CT Scan. > The results of these test confirmed the biopsy results with no definite> indication that it is in other areas of my body. > I will be starting Chemo and Radiation in the next 2 weeks and will keep you> updated on the process and prognosis. > > in Atlanta> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 "Over the last 3 weeks I have had an Ultra Sound, CT Scan and a PET/CT Scan. The results of these test confirmed the biopsy results with no definiteindication that it is in other areas of my body. I will be starting Chemo and Radiation in the next 2 weeks and will keep youupdated on the process and prognosis. in Atlanta"Good luck with your treatment, and keep us up to date. Barrowpozbod@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 "News for everyone. I just had a conversation with my Doctor regardingHPV (Human Papilloma Virus) and anal cancer. He agrees with something Iwas not willing to say before checking with him."I think this is interesting. I'm very concerned about the lack of attention to anal dysplasia out in the real world, and if there is some reduction in disease, great.My only cautions would be that since is not known if protection is conferred on already infected individuals, getting the vaccine is probably not going to give anyone a pass on taking care of their butt. I would still recommend the kinds of screening your doctor is doing, until more data are available.and again, everyone on this list should assume they are HPV positive, no matter their top/bottom/versatile preferences or experiences. Barrowpozbod@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 The only obvious downside is the cost.There are reasons to wonder how much protection it will provide. The good results in young girls are in a population that is entirely seronegative.You do have to assume that there is somewhat less antibody production and protection in someone with HIV, but I say this as someone who just had a flu shot.You have to wonder how useful the vaccine will be as a therapeutic agent.I spent the morning discussing this with a Merck rep. They are very interested in this, of course, but have no data yet.Still, the downside being anal cancer, it seems even a small amount of protection is worth considering. Barrowpozbod@... Quote Link to comment Share on other sites More sharing options...
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