I've been following your forum answers since I was diagnosed in 2010. I find it very helpful to read your tips, particularly coming from a gay man with an interest in health and exercise - somebody much like myself.
I read somewhere that you had been diagnosed with lymphoma. Firstly let me say I hope you are now doing well. I'm sure you will have defeated it!
However, I found it very alarming that someone who is so clued up about health issues and who is so obviously doing all the right things could end up with such a diagnosis. As a positive person myself, is there anything I should watch out for that would indicate potential cancers? I suppose the earlier it is caught, the better? Also what are the best steps one could take to prevent it?
As a 50 year old struggling with terrible terrible bloating, I often wonder if something is going wrong with my guts. I had a colonoscopy a few years back but they didn't find anything. They put it down to irritable bowel syndrome.
Finally, what are the cancers ageing positive people are most likely to be diagnosed with?
Thanks for all your kind help and advice.
Thanks for your well wishes. I am well and still cancer free after being off chemo for 5 months (just got a biopsy done 3 weeks ago with good results).
I would like to expand on your comment "I found it very alarming that someone who is so clued up about health issues and who is so obviously doing all the right things could end up with such a diagnosis."
I wish my level of health education could protect me from a surprising diagnosis. Fortunately, I think at least it protects me from waiting too long to try to find answers. I am lucky to have a good doctor that considers me a partner in keeping me healthy. I also have a good insurance policy that allows me to reach the best doctors in a medical mecca like Houston.
Bloating has been a common thing for me in the past 20 years. But as soon as I started having bloating and discomfort that seemed unlike anything I have had in the past, I warned my doctor that I may need a H Pylori test and an upper GI endoscopy. Some people may have waited a lot longer thinking that it was just a digestive issue. Call me hypochondriac or call me proactive, but I have been living my life for the past 3o years expecting the best but getting ready for the worst. I learned a long time ago to get ready for any surprises that life may throw at me due to my long term HIV infection.
I have learned from reading numerous papers and attending conferences about the different cancers and complications that may happen to those of us with long term HIV who have been exposed for many years to replicating virus, toxic drugs, or low nadir CD4 cells. I am also hyper aware of how lucky I am to still be here even with 27 years of detectable viral load. However, finding a good balance between gratitude, staying in the present and being ready for any complications has not been easy for me. I think most long term survivors can sympathize with this statement.
Most of us who are aging with HIV and long term HIV infection have to be monitored for heart disease, anal cancer, and educated of any symptoms of lymphoma (these are the three main issues along with potential kidney, liver and bone density issues). All doctors automatically monitor our kidney and liver functions. Unfortunately, comprehensive monitoring is mostly accessible by the insured since most Ryan White funded clinics have limited resources. In most cases, it is our responsibility to remind our doctors for tests that we need following current guidelines for aging HIV patients.
If you have bloating that does not resolve with
these options and
complementary approaches , I would suggest that you follow the path I took. First, make sure that you do not have H Pylori bacteria growing in your stomach. Talk to your doctor about
the urea breath test . If the result of this test is positive, your doctor will prescribe a protocol of antibiotics and PPI's to treat H Pylori (it is complex and requires taking pills three times per day). You can also discuss with your doctor the need for you to have an upper gastrointestinal endoscopy done that includes biopsies of your stomach lining.
When it comes to preventing heart disease, your doctor monitors your lipids at at least twice a year if you have high LDL and triglycerides. Having an EKG once a year is also a smart thing to do. I get a stress test with contrast every 2-3 years also. Exercise, low sugar diets, certain
supplements and medications,keeping a healthy weight, avoiding smoking, lowering stress and using HIV medications with lower effects on lipids are all effective ways to do what you can to stay on top of heart disease. Also, being educated about symptoms of a heart attack is a good idea so that you and/or your loved ones can quickly respond by calling 911 when it matters.
Anal cancer prevention requires to get a high resolution anoscopy done every 2-5 years depending on your HPV and wart history. This procedure is not universally accessible yet by many aging long term survivors due to insurance or clinic restrictions and lack of long term data on the benefit of this technique in preventing anal cancer. As a bare minimum, a anal pap smear and digital rectal exam should be performed every few years. If you have not been exposed to most cancer producing HPV genotypes, get vaccinated with
a HPV vaccine.
The mentioned tests above are more important for those of us who have had HIV for a long time and/or have had low CD4 cells before starting HIV medications. We are not sure about the need to closely monitor men and women who started HIV medications with CD4 cells over 350 cells/ml. Everyone young, old, newbie or long term survivor, should at least have this discussion with their doctors, though.
I am living proof that someone can lead a pseudo normal and happy life even with the awareness of not knowing what is coming next. Remaining optimistic but cautious is healthy while aging with HIV.
I hope you keep us informed about what your bloating leads and that you get this discomfort resolved.
All the best,