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Poll

Do you live your positive life thinking about a cure?

No, a cure isn’t something I think about.
10 (62.5%)
I sometimes think about a cure, and how different life would be after one.
2 (12.5%)
I think often about a potential cure and how it would change my life.
2 (12.5%)
Since my diagnosis, I have been waiting for a cure.
2 (12.5%)

Total Members Voted: 16

Voting closes: August 06, 2024, 10:58:33 am

Author Topic: Are you concerned about finding a cure?  (Read 2230 times)

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Offline numbersguy82

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Are you concerned about finding a cure?
« on: July 07, 2024, 10:58:33 am »
I’m just curious about how everyone feels about a potential cure for HIV. Personally it doesn’t enter my mind at all. However, I wonder how important it is for everyone else?
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Offline Jim Allen

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Re: Are you concerned about finding a cure?
« Reply #1 on: July 07, 2024, 11:15:17 am »
Not.

I am too busy living my life with the functional cure we already have, a pill a day and move on, to focus on things that will only happen long after I am dead.

It also pains me when I see people getting their hopes up, stopping treatment or delaying it or getting hyper-focused on this instead of living their lives and looking after themselves. Seen a few pass away or put their lives on hold for too long whilst focused on an upcoming cure instead of taking treatment.

Every 2-3 years for the past 40 years they have promised a new cure for PLHIV is close due to some breakthrough novel developments or technology or worse yet they keep flogging a dead-end as if its new, anyhow, were still nowhere closer ::)

« Last Edit: July 07, 2024, 11:33:04 am by Jim Allen »
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Offline Tonny2

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Re: Are you concerned about finding a cure?
« Reply #2 on: July 07, 2024, 12:15:45 pm »
Not.

I am too busy living my life with the functional cure we already have, a pill a day and move on, to focus on things that will only happen long after I am dead.

It also pains me when I see people getting their hopes up, stopping treatment or delaying it or getting hyper-focused on this instead of living their lives and looking after themselves. Seen a few pass away or put their lives on hold for too long whilst focused on an upcoming cure instead of taking treatment.

Every 2-3 years for the past 40 years they have promised a new cure for PLHIV is close due to some breakthrough novel developments or technology or worse yet they keep flogging a dead-end as if its new, anyhow, were still nowhere closer ::)

Offline harleymc

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Re: Are you concerned about finding a cure?
« Reply #3 on: July 07, 2024, 10:31:02 pm »
A long time ago,.I participated in a cure trial.

30 years have passed, still nothing.

I'm not telling this to burst a bubble, we can stop transmission, live long lives, it would be nice if treatments were free to all.

Offline joemutt

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Re: Are you concerned about finding a cure?
« Reply #4 on: July 08, 2024, 08:21:49 am »
Not me. I just take my medicine and do my tests as I have done for the last 27 years.

Offline leatherman

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Re: Are you concerned about finding a cure?
« Reply #5 on: July 08, 2024, 10:15:31 am »
Through the years, I've held each of these positions at one time or another; but it's been 40 years for me. For quite a number of years now, my choice has been "No, a cure isn’t something I think about".

Sure I used to think about a cure. In the 90s, while hearing about all sorts of things that "might" become a cure, I learned a lot about the science of HIV, meds, and possible cures. (In those early years, you really had to learn this stuff if you wanted to find out what meds were coming out and when. It literally was a matter of life and death.) Unfortunately I've learned that HIV is a complex virus; and just like a numbers of cancers and other diseases, creating a cure is simply beyond our means at this time...and may be for some time to come.

However, what science has done in the meantime, and done quite well, is produce treatments that have turned HIV from a terminal illness into a chronic disease. While that doesn't sound amazing, I can tell you from the personal experiences of my 2 deceased partners, my own hospitalizations, and my interactions with people here since 1999, that not dying and being alive and healthy more than a quarter of a century later by 2 pills a day (instead of dozens a day!) is freaking amazing. :D
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline leatherman

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Re: Are you concerned about finding a cure?
« Reply #6 on: July 08, 2024, 10:23:59 am »
cure for PLHIV is close due to some breakthrough novel developments or technology or worse yet they keep flogging a dead-end as if its new, anyhow
not speaking to the viability or not of this method, but hasn't some sort of CRISPR thingie been an almost "cure" every year for a loooong time now? :D

hmm. 75% for the no option right now. I bet I can guess names based on the LTSes who have posted. ;) :) LOL
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Kirat

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Re: Are you concerned about finding a cure?
« Reply #7 on: July 08, 2024, 11:21:47 am »
I was diagnosed not long ago and soon I realized that the less hope I have in a cure the better. Apparently, like Jim said, every 3/4 years they have been promising a cure. I think this has an extreme capacity to cause depression on those who have HIV if the new "cure" fails. I think it's better to have the mindset that we have good treatments and we can live life normally. If the cure comes, ok, good. But so far we can live with HIV very well with the treatments we have. It's just one or two pills. I think the real problem is the stigma and not the lack of a cure.
Switched meds again on 21/21/2023 because I had no changes with the new meds. Now, taking Dolutegravir + Lamivudine only, the dual therapy.
11/01/2023 VL : U                       CD4 452 - 21.52%
Switched meds on 10/26/2023: Darunavir + RTV + TDF/3TC ( 3 pills).
08/10/2023 VL : U                      CD4: 397 - 23.22%
06/20/2023 VL : U                      CD4: 422 - 20.73%
01/17/2023 VL : 1430/mL           CD4: 300 - 10.45%
Started Dolutegravir + Tenofovir/Lamivudine

Offline Jim Allen

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Re: Are you concerned about finding a cure?
« Reply #8 on: July 08, 2024, 02:26:45 pm »
not speaking to the viability or not of this method, but hasn't some sort of CRISPR thingie been an almost "cure" every year for a loooong time now? :D

Yes, that's Dr Khalili & co with CRISPR/Cas9, Dr Khalili has been at this one since 2014 or 2013 and keeps trying, it led in 2016 to claims in the media that HIV would be cured within 3 years and some people I know stopped taking their meds, recent retry was EBT-101.

However, one of my favourites was the pesticide team from 2010 with claims it was 3 months from human testing, 6 years later still in the test tube stage but with claims of a cure within 5 years or less ::) https://forums.poz.com/index.php?topic=64565.0

I'm not saying it can't be done and we learn a lot, but I don't see it happening within my lifetime. 

Quote
Apparently, like Jim said, every 3/4 years they have been promising a cure. I think this has an extreme capacity to cause depression on those who have HIV if the new "cure" fails. I think it's better to have the mindset that we have good treatments and we can live life normally. If the cure comes, ok, good.

👍
« Last Edit: July 08, 2024, 02:36:25 pm by Jim Allen »
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Offline Tonny2

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Re: Are you concerned about finding a cure?
« Reply #9 on: July 08, 2024, 04:23:58 pm »



                   ojo.             Back in the day, 1995, I would be looking for information about the cure and every time that there was a study I would get hopeful and then later on the same, Stady failed and I would feel sad so I decided to stop reading about studies and kept living my “life “because, it was the same feeling that I would get every time that I had a doctors appointment to check my blood work results and finding out that my treatment was not working. I lived with auds five more years after my aids diagnosis. So I just kept taking my failing medication anyway until the year 2000 the final a combo treatment increased my CD4 from 02 360 fat my viral load was still high.… Right now I consider the treatment a cure because it takes just one pill a day to live a normal life and for those who complain about taking one pill a day after getting for any reason, the virus I think that they had to spend a little bit of their time reading the stories of our longtime survivors members… I agree with what Jim says on his posts… Humble opinion.


Talking with a guy from an HIB WhatsApp group about The Cure, I would tell him don’t worry about that because the cure is not going to be present in our lifetime and he said to me that I was crazy, it’s been already 10 years since I told this guy about the HIV cure and he is still reading status about it. By the way, he takes just one pill a day. Lucky you… Hugs


Ps. sorry for my typos

Offline Tonny2

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Re: Are you concerned about finding a cure?
« Reply #10 on: July 08, 2024, 05:15:30 pm »



                now that I am reading my own post, I was getting double deceptions, reading the failure of the status for the cure and reading the failure of my treatment, and it made me think that, even though I knew that my treatments were failing, I kept taking them not getting the benefits of such treatments, but getting the side effects. Well, I’m still here after 30 years since my diagnosis still taking multiple pills, eight to be exact. It is what it is… Lucky you guys who take just one peel at day, like Jim said a functional CURE…hugs

Offline Jim Allen

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Re: Are you concerned about finding a cure?
« Reply #11 on: July 08, 2024, 05:25:34 pm »
@Tonny2

I think both of your posts are excellent, thank you  :)

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HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
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You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
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Offline Brian1966

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Re: Are you concerned about finding a cure?
« Reply #12 on: July 09, 2024, 11:29:51 am »
I've seen a lot of news stories about ground breaking studies involving both a vaccine and a cure.  Like a lot of people, I hope / pray that one day HIV is gone but I don't hold out a lot of hope for either.  I do fell lucky that my diagnosis was in the days of effective treatments, I remember the days of most people dying from it and know more than a few people who are no longer with us.  Treatments are amazing today.  Hearing the stories of others here and their survival stories and seeing the results in my own treatment gives me a lot of hope.

As always, thank you to everyone here that is willing to share your experiences.

Offline Tonny2

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Re: Are you concerned about finding a cure?
« Reply #13 on: July 09, 2024, 05:07:04 pm »
@Tonny2

I think both of your posts are excellent, thank you  :)



                            ojo.                 :)         

Offline LeftyBowler300

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Re: Are you concerned about finding a cure?
« Reply #14 on: July 10, 2024, 12:52:50 am »
I'm against the grain here. I think about it often. I think about how good it would be to not have to panic trying to remember if I took my pill. I think about how good it would be to not have to worry about who I disclose to, and if my next sex partner is a town gossip. I think about how good it would be to not have to worry about being laid off, losing my insurance, and losing access to medication. I think about how good it would be to not read the next "accelerated aging" or "increased inflammation" in undetectable PLWHIV article that I can't help but doom google late at night. I bask in the copium that I'm "cured" like everyone else, and I don't let the hope stop me from living my best life, but man what an alternate life an actual cure would give.
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline Brian1966

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Re: Are you concerned about finding a cure?
« Reply #15 on: July 10, 2024, 08:38:32 am »
Obviously a cure would be life changing for so many and I don't mean life changing like it's used today for trivial crap like fucking "life changing avocado toast hacks".  If we never had to deal with any the worries that you describe it would be a blessing.  Those thoughts do take semi frequent runs through my brain and they're real concerns to many of us.

That said, I try not to go down the rabbit hole on reading about everything that might possibly happen as a result of this condition.  I might also get prostate or colon cancers, pretty good chance with my family history there.  I might also just have a massive coronary or stroke out, also a family history there.  Do your best, find a system that makes taking your daily meds easy to remember.  I literally set alarms on my phone, although it's a pretty ingrained habit after taking them daily for the past 20 or so months I do on occasion get distracted by a random shiny object.

Offline Tonny2

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Re: Are you concerned about finding a cure?
« Reply #16 on: July 10, 2024, 10:20:25 am »
I'm against the grain here. I think about it often. I think about how good it would be to not have to panic trying to remember if I took my pill. I think about how good it would be to not have to worry about who I disclose to, and if my next sex partner is a town gossip. I think about how good it would be to not have to worry about being laid off, losing my insurance, and losing access to medication. I think about how good it would be to not read the next "accelerated aging" or "increased inflammation" in undetectable PLWHIV article that I can't help but doom google late at night. I bask in the copium that I'm "cured" like everyone else, and I don't let the hope stop me from living my best life, but man what an alternate life an actual cure would give.


                     ojo.              For me, you are a example of being a survivor, you have gone through a lot, and I’m glad that you are still here with us and you have the right to be concerned about everything. I admire your residence…… I remember back in the days when I used to take around 20 pills a day this would be 10 in the morning and 10 at night, and sometimes I forgot to take my 10 pills and I will say to myself “how can someone forget to take them pills”.., right now I’m taking four in the morning and four at nine. My routine is I take the first four pills with my breakfast and the other four with my dinner. I don’t get up from the table until I take my medication otherwise I would forget to take them, even after 30 years of taking medication… Hugs your way my friend Letty.



PS. I’m sorry for my typos.

Offline Dogman

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Re: Are you concerned about finding a cure?
« Reply #17 on: July 11, 2024, 09:27:27 pm »
I'm against the grain here. I think about it often. I think about how good it would be to not have to panic trying to remember if I took my pill.
Like you, as a newer member to the club, I think about it often - just as I think about the situation I'm in almost hourly, there's always something that makes me think about it. What if Trump gets back in and pre-existing conditions are once again not mandated to be covered by insurance? What the hell will we do then? One thing I am good at is taking my pill - but it's a daily jolt of my reality. ( again I sound like I'm whining, I'm not) One reassuring thing I have come to though, is I've lost friends to various illnesses past few years - so there's always something that will get you ultimately. I think the current ("functional cure" - as it was put by someone else in your replies ) does give us some reassurance. I dunno, it's a difficult quandry, that has stigma all over it and to be free of this burden would be unbelievably freeing, and I trust in science - so who knows. All the best to you.

Offline numbersguy82

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Re: Are you concerned about finding a cure?
« Reply #18 on: July 13, 2024, 05:54:44 pm »
I love all of this interaction and differing perspectives. My objective was to perhaps show some newly diagnosed folks that, while it seems impossible now, there may come a day where this virus doesn’t completely monopolize your life, your thoughts, and your future outlook.

In the beginning that seems like something that could never become reality. However, by an overwhelming margin, that’s the consensus here with our actual members.

Food for thought and perhaps some small measure of relief.
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