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Author Topic: Will we have non-AIDS defining cancer?  (Read 1379 times)

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Offline Pravawut

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Will we have non-AIDS defining cancer?
« on: November 01, 2019, 05:42:00 am »
Sometimes I feel very fortunate that I was able to detect the infection early and able to suppress the virus. Current CD4 hovering around 800. Diagnosed 2 months ago after seroconversion.
But sometimes I begin to feel negative about the future. I feel like I am dealing with an  "imperfect body" waiting to break down soon. Recently reading about non-AIDS defining cancer and starting to sweat and keep letting negative thoughts rule my mind. Also trying to tell myself maybe a cure will come after 5 to 10 years before non-AIDS definding cancers kick in.
I want to ask kind souls here especially those PLHIV for 10, 15 to 20 years with virus fully suppressed. Have you gone through those non-AIDS defining cancers? Im just feeling mood swings and keep thinking about it.  :(

Offline joemutt

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Re: Will we have non-AIDS defining cancer?
« Reply #1 on: November 01, 2019, 06:58:56 am »
what do you mean by 'non aids defining cancers'??

Offline Jim Allen

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Re: Will we have non-AIDS defining cancer?
« Reply #2 on: November 01, 2019, 08:49:06 am »
Hiya,

Sorry to hear that you are feeling negative or stressing about the future.
To be honest, though nobody has a crystal ball, you could be run over crossing the road tomorrow.

Quote
PLHIV for 10, 15 to 20 years with virus fully suppressed

Life, well cancer might be part of it, keeping in mind increased risk as a group doesn't mean you will get cancer, an example we might both be living with HIV but my risk of cancer might be many times greater than yours.  The good thing is you are seeing a doctor often so higher odds of picking up on problems earlier than the general population also lots of cancer types are becoming more and more treatable. Well treated HIV also reduces certain cancer risks, and if you are concerned then work on your other controllable factors. Stop smoking, Drink less alcohol, be more active, balanced diet etc etc     

Poz.com published this in 2015 that also relates to the topic "How People With HIV Can Combat Their Raised Risk of Cancer" https://www.poz.com/article/NADC-cancer-prevention-27736-6392   

All in all, you live in the here and now, you have HIV nothing can change that but with today's treatment & care life expectancy for someone starting treatment early is near normal, some studies showing as a group we would outlive our HIV negative peers. It's not a personal guarantee but I find it is a good reason to have a positive outlook

Best, Jim


https://www.poz.com/article/life-expectancy-24972-2090 (With treatment)
Life Expectancy for Young People With HIV Is Nearly Normal

https://www.poz.com/article/modern-progress-hiv-treatment-care-likely-adds-decade-life

the average age of death for a 20-year-old starting ARVs with a CD4 count greater than 350 during 2008 to 2010 was 78 years.

More references can be found here: https://forums.poz.com/index.php?topic=2276.0

« Last Edit: November 01, 2019, 09:04:38 am by Jim Allen »
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Offline Mindless

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Re: Will we have non-AIDS defining cancer?
« Reply #3 on: November 01, 2019, 11:44:46 am »
Donít get me wrong but honestly the article by Benjamin Ryan is not much encouraging...

Quote
on average HIV-positive people are diagnosed with the cancer 25 to 30 years earlier than the general population

Quote
Other notable NADCs occurring disproportionately among people with HIV include anal and rectal, head and neck, prostate, breast, and liver cancers, as well as Hodgkinís lymphoma.

Quote
While people with HIV who are in their 30s are at twice the risk of developing NADCs compared with the general population, this disparity increases to seven-fold for those in their 40s, 14-fold in their 50s, and 28-fold when they pass 60.

Quote
Additionally, even when someone is on HIV treatment, low-level replication of the virus may lead to a state of harmful chronic inflammation that some scientists believe could contribute to a higher cancer risk. HIV may also cause changes to the DNA of cells that protect against cancers, as well as those that predispose individuals to such diseases.

Jesus, Benjamin Ryan :'( :'(...

Offline Jim Allen

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Re: Will we have non-AIDS defining cancer?
« Reply #4 on: November 01, 2019, 11:47:39 am »
Depends what you are looking to find.



HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
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HIV Testing
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HIV TasP
You can read about HIV prevention here:
HIV prevention
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Offline Jim Allen

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Re: Will we have non-AIDS defining cancer?
« Reply #5 on: November 01, 2019, 12:00:20 pm »
Quote
Antiretrovirals have allowed many HIV-positive individuals to live long and healthy lives, in part by preventing AIDS-defining cancers such as Kaposiís sarcoma, which helped defined the horror of the early years of the epidemic.

Quote
fortunately there is still plenty that the average person living with HIV can do to better their odds of enjoying a long and healthy life.

Context
Quote
Among all NADCs, lung cancer is the biggest threat to people living with HIV, in no small part because of that populationís high rate of smoking

Logic
Quote
Simply spending more time alive ups the chance that a disease might strike. And then the aging process itself raises the risk of cancer.

Perfect! Got to die of something, can't live forever.

Quote
Research has suggested that having a higher CD4 counts as a result of HIV treatment may lower your risk of NADCs. And thanks to the long-awaited results from the START trial, the jury is in: Itís best to treat HIV as soon as possible after diagnosis.

Fantastic for the OP BTW - Fuck all good for those that waited or from before treatment or when treatment was on hold until you were sick.

Quote
The average life expectancy of a 35 year-old HIV-positive individual is 63 if he or she smokes and 78 without the nicotine habit.

Quote
Staying away from illegal street drugs and curbing alcohol use is also advisable, for overall health and well-being at the very least. Alcohol abuse can contribute to liver cancer, which is a particularly significant worry for those who are coinfected with hepatitis B or C viruses (HBV, HCV). Clinicians generally advise those with either HBV or HCV not to drink at all, considering how much alcohol can accelerate the damage these viruses cause to the liver.

Also, being overweight or obese can raise your risk of certain cancers. Changing diet and exercise or investigating other options to promote a healthy weight is an important way to address overall health.

Etc, etc, etc

Look it's not a happy bunny fluffy warm topic, still, I would rather have something fairly written i.e outlining both the good and the bad with context around it and what can be done if I am honest.



« Last Edit: November 01, 2019, 01:04:19 pm by Jim Allen »
HIV 101 - Everything you need to know
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HIV Transmission and Risks
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HIV Testing
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HIV TasP
You can read about HIV prevention here:
HIV prevention
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PEP and PrEP

Offline Mindless

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Re: Will we have non-AIDS defining cancer?
« Reply #6 on: November 01, 2019, 12:01:58 pm »
Depends what you are looking to find.

Well, I quoted the original text. Anyways, I donít want to open an argument about this. I just share the same concerns of Pravawut but I agree with you Jim that the only thing we can do is acting on what we have control over: smoke, alcohol, diet and exercise, prevention.

Still I canít help but think about the future with worry. Iím 50 and a probable middle age crisis coincided with my dx and itís a very challenging mixture. I suffered from depression most of my life (bad family issues and previous health issues), so this may play a role in my gloomy outlook.

Thanks for your words though Jim, theyíre wise words coming from lived experience. I agree with most of what you wrote.

Hugs

Offline Jim Allen

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Re: Will we have non-AIDS defining cancer?
« Reply #7 on: November 01, 2019, 12:11:25 pm »
Well, I quoted the original text. Anyways, I donít want to open an argument about this. I just share the same concerns of Pravawut but I agree with you Jim that the only thing we can do is acting on what we have control over: smoke, alcohol, diet and exercise, prevention.

Still I canít help but think about the future with worry. Iím 50 and a probable middle age crisis coincided with my dx and itís a very challenging mixture. I suffered from depression most of my life (bad family issues and previous health issues), so this may play a role in my gloomy outlook.

Thanks for your words though Jim, theyíre wise words coming from lived experience. I agree with most of what you wrote.

Hugs

Yeah, I quoted it as well but more the positives instead.   ;)

I'm not looking to argue either, but my point is if you are looking for the negative or just focusing on this you will find it particularly as it's trying to be factual whilst presenting what you can do instead of focusing on what you can't.   

I would agree it's short, more context could be given but I've found that hard to find on this topic without it sounding too clinical or too fluffy. I will say this page was from 2015 it could do with an update and rewording noticing the whole He/She thing
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Mindless

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Re: Will we have non-AIDS defining cancer?
« Reply #8 on: November 01, 2019, 12:45:13 pm »
I would agree it's short, more context could be given but I've found that hard to find on this topic without it sounding too clinical or too fluffy. I will say this page was from 2015 it could do with an update and rewording noticing the whole He/She thing

I have to add that I donít have anything against this particular author. I just find sometimes the articles ďdifficult to digestĒ. As you say, it may due to the need to ďcompressĒ huge/geeky information in limited characters.

But thatís only my personal opinion as an average PLHIV with an average knowledge about the hiv subject.

Anyways, I think in the the best approach is, as one of my most experienced doctors told me after the dx: ďdonít cry over the spilled milkĒ, no sense in wasting your time  doing that, whatís done itís done and you canít change it anyways. Yes, sounds like usual ďgrandma adviceĒ but itís actually an extremely wise/pragmatic way of looking at things.

I would add also ďno point in worrying about something that hasnít happened alreadyĒ, itís only wasted time you may spend playing with your kids or making love with your woman/man or taking a walk in the park. Or, as Seneca said (let me show off my little culture  ;)) ďwe suffer more in imagination than in realityĒ.

Finally, as you said, ďletís focus on the things we can control now, not on what we have no control overĒ (exercise, food, prevention).

By the way, Iím due to the vampire next week, wish me good luck!

Hugs


Offline Jim Allen

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Re: Will we have non-AIDS defining cancer?
« Reply #9 on: November 01, 2019, 01:06:33 pm »
By the way, Iím due to the vampire next week, wish me good luck!

Hugs

Time flies, 6 months is nothing.
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
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HIV Testing
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HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline joemutt

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Re: Will we have non-AIDS defining cancer?
« Reply #10 on: November 01, 2019, 10:43:38 pm »
Donít get me wrong but honestly the article by Benjamin Ryan is not much encouraging...

Jesus, Benjamin Ryan :'( :'(...

yes, that got me thinking, also.
28 fold risk of developing cancer after 60.  :o
i am glad i never read that before.
« Last Edit: November 01, 2019, 10:46:14 pm by joemutt »

Offline Mindless

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Re: Will we have non-AIDS defining cancer?
« Reply #11 on: November 02, 2019, 12:23:42 am »
yes, that got me thinking, also.
28 fold risk of developing cancer after 60.  :o
i am glad i never read that before.

Yes, probably better not to know after all. Also, I wonder what's the use of writing it in an article for the general public... It's ok to inform about increased risks and the importance of prevention but those numbers make you only worry. IMHO.

On the bright side, I'm 50yo so I have only 14-fold increased risk  :-\
« Last Edit: November 02, 2019, 12:26:06 am by Mindless »

Offline harleymc

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Re: Will we have non-AIDS defining cancer?
« Reply #12 on: November 02, 2019, 04:35:15 am »
Bear this in mind cancers are not the major killer in society, so although we can luxuriate in getting anxious about cancer it's an overrated life threat.


So let's look at the thing we can actually do about reducing risks rather than feeding anxiety uselessly. Some of these things will also reduce our cardiovascular and dementia risks.

Stop smoking, reduce or stop drinking, get several hours of exercise per week, eat plenty of vegetables. Get vaccinated for hep B, vaccinate if eligible for HPV. 

I have hpv16 so I get the med for anal cancer annually, I am past fifty so i get checked for
Howell cancer every five years and get a mole check up.

All good, there's a lot of cancer risks under my control.


Beats feeling like a victim or becoming one.

Offline Mindless

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Re: Will we have non-AIDS defining cancer?
« Reply #13 on: November 03, 2019, 02:36:04 am »
I would add also that compared to the old days of early epidemics when no meds were available or they were highly toxic, we can consider ourselves privileged: we can luxuriate, as Harleymc says, in getting worried about age related degenerative illnesses or NADCs. People from that era would have probably given away everything they had to have such a possibility.

On the other had, we are sons of our time (like the ones before us were of theirs and ones that will come later will be) and therefore look at reality with a different perspective: my grandpa walked 20 km a day on foot back and forth only to get to his workplace, still I complain about traffic jams on my way to work.

Anyways, thinking about the past can give us some perspective and let us appreciate the privileges we have: living in an era where effective medication is available, hiv is no more a death sentence and we can go on with our life in an almost normal way.

Hugs

Offline leatherman

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Re: Will we have non-AIDS defining cancer?
« Reply #14 on: November 03, 2019, 09:04:01 pm »
On the other had, we are sons of our time (like the ones before us were of theirs and ones that will come later will be) and therefore look at reality with a different perspective
"People from that era "  ;D

Hello there.  :)  Some of us are Long Term Survivors. We lived through that past and are still living today. Believe it or not, it wasn't all that long ago. ;) While I have buried two long term partners (one in 1994 and one in 2008), taken meds for 27 years since starting AZT, have been HIV positive for 35 years (on Nov. 20th), I'm now married (3 yrs on 11/26), bought a house 10 months ago, have lived to 57 yrs old (and over halfway to the next birthday), oh and most important for this thread, have no cancer.

Instead of worrying about cancer, I worry about living. A lot has to do with your immune system, that you get by genetics. I see that I look like and have health issues similar to my mom's side of our family. What I know about her side is that she's almost 80 and if her hypochondria doesn't kill her, she'll probably live as long as her mother (my grandmother). Nana is now 102 (and a half) and we visit her every Sunday to talk about the weather, sports, and a little politics. Her brother and 2 sisters, like their mother, all lived into their late 90s. Nana's brother died at 96 when he fell off the ladder after cleaning the gutters. My Great grandmother died a year after falling and breaking a hip when she was pitching hay and stabbed her foot with a pitchfork (for the 3rd time in two years). Nana herself has all her own teeth but had to have one hip replaced when she was 96 and had the other hip replaced when she was 98.

Having outlived all my friends of the 80s and 90s, having outlived several long term partners, having not died of AIDS twice, and knowing how long-lived my family is, I find what I worry about is not cancer but that I'll live to be in my 100s - and that I'm only about half way there. :o :D

Yes, probably better not to know after all.
I think that that used to be the idea of some of us "people from that era". When there weren't any meds and you were probably going to die anyway like all your friends, it seemed better not to know.... well, not until you were ill and dying.  :(  :'( those were dark times.

I also used to have that idea not that long ago when my 2nd partner passed away from aids and non-hodgkin's lymphoma. While we spent those 60 horrible days in the oncology ward of the hospital, I saw 6 people have parties celebrating going home cancer free. I also saw 6 people leave in body bags. For someone who dislikes risk, 50/50 are some crappy odds IMHO. But medicine keep advancing - cancer research has actually moved forward because of HIV retrovirus research, and the fast-tracking of some meds. These days, I would like to know... so just like with HIV, I might have the chance to treat it early. Thankfully, Ryan White quality measures of healthcare have ensured that I have gotten comprehensive care in my HIV clinics. I feel certain that if my bloodwork would indicate a problem or that I would have some other symptom, that I could get an early diagnosis and the option of early treatment. Of course, at my age, I've already had several screenings, colonoscopy, other tests, etc. and I feel pretty confident that if things should change for the worse in the future, the treatment will be even better (i've seen the improvement of HIV treatment since the 80s and the improvement of cancer treatment since the 70s (when no one discussed their grandfather having "the big C" except in muted whispers. talk about stigma))

ok to inform about increased risks and the importance of prevention but those numbers make you only worry.
I look at reports like this like I do the list of side effects on a bottle of meds. Yes, some people have cancers and some have side effects, but I get up every morning "believing" that I am one of the 95% that won't have side effects and won't have cancer. However, I certainly believe that "knowledge is power" and before taking any med, I research the topic and know all the BAD* side effects. Like I said, not because I think I'll have them; but just in case.


*there's all this fixation on the 2-3% side effects that are bad; yet all the while there's the overwhelming side effects (suppressed HIV, improved immune system, and health) that are 97-98% GOOD.
leatherman (aka mIkIE)


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Tivicay/Prezcobix

Offline Mindless

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Re: Will we have non-AIDS defining cancer?
« Reply #15 on: November 03, 2019, 11:36:18 pm »
"People from that era "  ;D

Sorry Leatherman,

no harm intended, only bad English: although Iíve been using this pragmatic language for longtime I still stumble on mistakes or misunderstandings. My intention was to say that people from different ďperiodsĒ (in my native language ďeraĒ can be used in that sense too) can view things in different ways.
Besides, the analogy I made with my grandpa wasnít at all connected to that: it was only meant to better explain the concept not to directly compare people or facts.

After all, as I mentioned above, Iím 50yo therefore we may be brothers. I read with great interest the LTS stories here on the forum, they are a source of inspiration to me and teach my a lot.

By the way, glad to hear youíre aiming at the 100s cause Iím an avid reader of yours! Though if I look at my family genetics history, you may go on writing way longer after Iíll have reached my ancestors ;D

Hugs

Offline harleymc

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Re: Will we have non-AIDS defining cancer?
« Reply #16 on: November 04, 2019, 02:50:52 am »
I'm also one of the second wave of HIV diagnoses.

The first wave was of course the men and women diagnosed with AUDS related health issues before the antibody tests.

I'm in the second wave receiving my antibody test within months of the test being released.  We were blissfully niave thinking that, if we had antibodies, we had the virus beat.

Anyway that's a long way from the original cancer thread.

Have the wisdom to understand what is under your control and what isn't.

Just make healthy choices, get regular checkups and don't worry about stuff that's out if your control.

Offline leatherman

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Re: Will we have non-AIDS defining cancer?
« Reply #17 on: November 04, 2019, 11:49:30 am »
don't worry about stuff that's out if your control.
the hardest and best advice ever :)




the second best piece of advice:
get a dog! :D
leatherman (aka mIkIE)


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Tivicay/Prezcobix

Offline JosephP

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Re: Will we have non-AIDS defining cancer?
« Reply #18 on: November 04, 2019, 09:35:23 pm »

Instead of worrying about cancer, I worry about living. A lot has to do with your immune system, that you get by genetics

Nicely said!
We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds!

 


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