PCP

[leatherman]

Hi from TOKYO.

For the past few days, there has been a discussion about the relations between HIV and cancer in our local poz site.   Do far I have not joined the heated discussion.   One group says that the virus causes cancer  and the other ssys that cancer is caused by the medication.   Does anyone here have any thoughts about that?  Arigato .

neither HIV nor the medications cause cancer.

HIV destroys cd4 cells while creating more HIV. HIV does not create cancer
medications inhibit HIV replication. HAART does not create cancer

however, being HIV+ (with the destruction and/or inflammation of our immune system) clearly does make us more susceptible to having an array of cancers that we might be genetically predisposed to having.

[DANIELtakashi]

Leatherman  レザーマン、

Thank you for the information.
I will post its Japanese version on the site.

Arigato .

[Tonny2]

       ojo       Hello Daniel...20 years living with HIV, twenty years taking meds, no cancer to report, so far...there is no cancer in my family history...hugs      ojo

[DANIELtakashi]

Tonny,

Thanks much.
You are always kind.

[Jeff G]

Hi from TOKYO.

For the past few days, there has been a discussion about the relations between HIV and cancer in our local poz site.   Do far I have not joined the heated discussion.   One group says that the virus causes cancer  and the other ssys that cancer is caused by the medication.   Does anyone here have any thoughts about that?  Arigato .

Aids related cancers predate the meds that saved our life … so I call the claim that   our meds cause cancer false .

[DANIELtakashi]

Jeff,  ジェフ
Thank you for your comment.
Arigato.

[DANIELtakashi]

Tonny.

This is how your name is written  in Japanese.
トニー

[Jeff G]

As a matter of fact the incidence of aids related cancer is greatly reduced by our meds as it shores up and strengthens our immune systems . As an example … kaposi Sarcoma most times resolves after a person gets stable on HIV meds .

[Almost2late]

As a matter of fact the incidence of aids related cancer is greatly reduced by our meds as it shores up and strengthens our immune systems . As an example … kaposi Sarcoma most times resolves after a person gets stable on HIV meds .

Daniel, Jeff is telling the truth here.. I had Kaposi Sarcoma and it cleared up with Atripla alone, no chemo or radiation was needed.. I am very grateful for this.

[DANIELtakashi]

Almost,   オールモスト、

Thank you.
Do you still feel out of breath?
I sometimes do.

[Almost2late]

Not as bad as when I first came out of the hospital, I use to get outta breath walking to the corner. Much better now

How about you Daniel, are you still out of breath?

[DANIELtakashi]

Almost,

When I climb up the stairs,  I  feel breathless but not so bad.

[Tonny2]

Tonny.

This is how your name is written  in Japanese.
トニー

       ojo     Interesting my friend, thanks...hugs      ojo

[DANIELtakashi]

Hi.

This time people on the local site are arguing over the possibility of dimentia. 
How much is known about what we call HAND?  Sorry this must be an ambiguous question.
I am also quite worried because I m already fifty years old.

[Jeff G]

Try not and worry over things that you do not have my friend. The truth is since you a 50 and on treatment your health is going to monitored far better than most people who do do not have HIV for any conditions HIV related or otherwise. Your odds for a long happy healthy life far exceed any of the negative health concerns that could befall a man of your age when it comes to HIV since you are on successful treatment. All is well . 

[zach]

daniel,

you're winning the battle, are you so eager to keep fighting that you look for a new enemy?

get out of the worry well brother. the things that might happen to us, they're endless. don't spend your time and energy on problems you aren't faced with, there aren't enough hours in the day for that.

you're on meds... good ones, and that is the single greatest thing you can do to minimize risks.

be confident


*but hey, if you do forget something, or when something slips your mind... you can always blame it on the aids dementia (works for me) 

[Tonny2]

            ojo      Hello my friend....please, do not worry until you have something to worry about...I'm 52 years old, taking meds for twenty years, and I haven't noticed any memory loss... hmmm what we were talking about?, lol..hugs     ojo

[DANIELtakashi]

Jeff,
Zach,
Tonny

Thank you.

[DANIELtakashi]

And the viral load 20, not ud.
How can l interpret this?
Shocked.

[DANIELtakashi]

Hi again.
When I was writing my last posting in the subway,  I was being shocked and quite panicking.  Later than that, I had a chance to talk with a medical professional woman on the phone and she was much more helpful.   I don't know if I can translate what she told me into English well enough but I  will try. 

1.  The cd4 number changes a lot during the day.  The soldiers are not only in the blood but they tend to gather in lymphs, so it can happen that the blood check does not necessarily show what exactly it is.

2.   The device to check the viral load is not almighty.    It cannot measure the small load precisely enough,  therefore 40~50 or undetectable are not a big difference. 

  Now I like this woman better than my doctor.

Hope you understand what I am saying?

[zach]

daniel, she took the words right out of our mouths

your viral load is undetectable, in any language

and your cd4 drop... it was a blip, it only looks like a significant drop because you have such a low count

you're ok. important thing is you're not experiencing treatment failure.

last thing, and i'm sure you've seen it said, now it's being said to you. don't look too closely at one lab result to tell you the story. look at the trends over a few consecutive tests.

if your viral load suddenly shoots up substantially on one result, that is cause for concern. but really, if you remain adherent on your meds, you'll have nothing to worry about

[DANIELtakashi]

Hi, Zach  niisann.

Yes.   
AND the woman said this, too - in the case of treatment failure,  the viral load will go up by hundreds.    Her name is Umeko sensei.

[zach]

Zach  niisann.

  arigato oniisan (you're a little bit older than me, so that would be correct right?)... that means a lot to me, been waiting for you to stop being so damn formal all the time you're among friends

[DANIELtakashi]

Hahaha.
I will call you BROTHER,  BUDDY,  PAL, or SPORTS FAN ....

When I was in the training of learning English,  the teachers trained me to address people Mr Miss Mrs.   I was one time kicked out of the class by a teacher  when I  said ain't.   She almost had a heart attack listening to LIKE A VIRGIN by MADONNA.     The teacher was from Spokane.  Fond memories.

[DANIELtakashi]

And in 1970, I was six years old.   I had a special encounter with TINA TURNER at TOKYO AIRPORT and she extended her hand to shake mine.    Ike was there, too.     At that time, her hit PROUD MARY soinded like &@#%+=*:^/)9!?)/#-*+-+---!=-#.     Now l can catch the words in that song.

[leatherman]

twenty IS undetectable.
(wonder why so many doctors don't explain this to patients; or why, maybe, patients don't hear this information when explained? We're always having threads here explaining that 20=UD)

"Undetectable" is just a word used to describe a very low HIV viral load. Undetectable does not really mean "not detectable" (because small amounts can be detected), nor does it mean the HIV is gone. "Undetectable" simply means the point at which this blood test no longer detects HIV. I'm going to bet, like almost everywhere now, that the lab were your blood is tested only tests down to 20. In the past, viral loads couldn't be measured below 500 - and that was called "undetectable". Then in the last 5 yrs or so, the test was improved and now can actually measure down to two (2). However that test is more expensive - plus there is nothing to gain in knowing the viral load count is a low number of 20 or of 2. Actually a count anywhere from 100 to 2 is really no different from "undetectable".

"Blip" is another misunderstood word. to be honest, until a viral load count rises to 1000 or greater, it probably shouldn't even considered a "blip".

How can l interpret this?
Shocked.

shocked? no way!! you should never be shocked by a viral load under 100. We all have virus in us. We all have reservoirs of virus, that might just be putting out HIV when our blood is tested. We also have an ever-changing level of cd4s, so you should never be shocked by ANY cd4 count (instead you have to interpret cd4 counts as a trend of several tests over some time)

how should you interpret a VL of 20?
this is no interpretation. 20 IS "undetectable".

[DANIELtakashi]

Leatherman.

Special thanks to SC. 

[DANIELtakashi]

Leatherman ,

Thanks again.
My doc is a man of few words and does not tell me those things.   One time I forwarded a complaint about him.

[zach]

blip
: something relatively small or inconsequential within a larger context
: something that is small or unimportant or that does not last a long time
: a transient movement up or down (as of a quantity commonly shown on a graph)

blip isn't even in merriam websters thesaurus, thats how unimportant it is

so lets come up with a new word to describe normal and usual minor fluctuations that are clinically insignificant, something better than a single syllable, four letter word

something short, that sounds harmless, comforting even. without sounding dismissive of someones concern, but minimizes and soothes their worry

how about minimum allowed tolerance? minor variance? kind of a mouthful though

thoughts? ideas? 

[DANIELtakashi]

My GOD.
I am not a native speaker of English but your choice sounds like a good one.
Minimum allowed tolerance .

[Tonny2]

And the viral load 20, not ud.
How can l interpret this?
Shocked.

          ojo        Hello amigo Daniel...20 meanns UD...treatment failure=higher VL, there is a battle inside your body between your soldiers (cd4) with help of your meds, against the invaders (HIV), you r soldiers beat up hiv, tho you suffered some casualties of war, less soldiers, but now, that your VL is UD, your soldiers, won't have nooene to fight anymore, so, now they will increase...take it from somebody whom his VL was way to high for 12 years....congratz on your UD viral load...hugs          ojo

[DANIELtakashi]

Tonny,

Arigato.
Are you near Cleveland ?
Do you know Olmsted ?   I visited threre in 1990.

[leatherman]

how about minimum allowed tolerance? minor variance?

"allowed tolerance" is probably not a definable thing as "blips" are often different per person and unsustained short-term increases in VL. that's why they are called "blips" and not therapy failure. Therapy failure would be marked by a continual viral load increase over several tests.

I have known lots of people to experience these "blips" and the amounts ranged from the tens to thousands. Personally I have had "blips" of 2500, 1800 and 980. Were these lab errors, reservoir spillovers, etc? There was certainly no "minimum" or maximum amounts. Each of these blips were followed by multiple labs back at an UD level.

"minor variance" is probably the more correct, scientifically and mathematically.

[DANIELtakashi]

Esoteric but interesting.

[DANIELtakashi]

Leatherman Mikie told me this a few months ago.
Hope we will be able to say in ten years, it is 2025, not 2015.

Thank you, leatherman.

[zach]

earthquake! y'all doing ok? did you even feel it where you are?

[DANIELtakashi]

Thanks.
It was big and scary but I am alive.

[DANIELtakashi]

This may sound like a weird question and l apologize to you in advance. 

In the early time, I mean in the 1980s, did those who survived mostly go through one or two Ols  and then were they so lucky as to get recovered in spite of the monotherapy or were they lucky enough not to get to the advanced stage?

Let me get down to brasstacks, not beating around the bush.
Did many of you long term people experience Ols?
On our local site,  it is 60-40%.

Thank you.

[DANIELtakashi]

I should make it clearer- were they lucky enough not to get to the advanced stage until the advent of the new therapy?

Wow.  English is a tough language.

[Jeff G]

This may sound like a weird question and l apologize to you in advance. 

In the early time, I mean in the 1980s, did those who survived mostly go through one or two Ols  and then were they so lucky as to get recovered in spite of the monotherapy or were they lucky enough not to get to the advanced stage?

Let me get down to brasstacks, not beating around the bush.
Did many of you long term people experience Ols?
On our local site,  it is 60-40%.

Thank you.

Many of us did have aids defining infections, I know I did . The reason I survived was timing and genetics. I had PCP early on but recovered and stayed out of the hospital for almost 10 years and then I got Kaposi Sarcoma on the surface of my skin and had tumors deep in my legs. I was getting very sick and losing tons of weight and then came 1996 and a few drugs that saved me ... I just got lucky and I do not take that for granted.

Its still true today that many people find out they have HIV when they are very sick already and that needs to change by encouraging people to test . Its also important to remember that since you are on treatment that is working you will not suffer the same infections others has dealt with.   

[DANIELtakashi]

Dear Jeff ,

Thanks much.
I am glad I could make the message understood in English.
I was not sure.


   By the way,  I  noticed when I  was in Massachusetts that they pronounced sure just like shore     
   there.

[DANIELtakashi]

I have read many of the blogs and seen the videos, too.
Most of them are very informative but mmmmmmm, some people...flippant.
Each person is different, of course.

[mecch]

What are you looking for in this research on people's experience, Daniel?

Have you seen the misc documentaries and films?  Sometimes the very personal amateur blogs are more real, of course.

Films which explore the dying:

Docs:
Pandemic: Facing AIDS -- Rory Kennedy
Absolutely Positive -- Peter Adair
Silverlake Life
We Were Here
Common Threads

Fictions:
Longtime Companion
Angels in America
Parting Glances
Semi-fiction - And the Band Played On

[DANIELtakashi]

Mecch,

Goodness .
I have never seen any of them above.

I saw the amateur blogs and videos.

[mecch]

OK
what about my question:

What are you looking for in this research on people's experience, Daniel?


So I mean why are you interesting in the time when people were dying and how only a few made it to the treatment era?

And specifically I am wondering if for you, a cure, and research on the cure, are still distractions, or if its pretty much realistic and in control.  Or if you are still worried that your lifespan on treatment is radically reduced.  Or if you are still worried that you are going to die pretty soon, or that you will have treatment failure.

Those kinds of questions.

And/or if you are interested in the experiences in the history of the epidemic, just learning more about the past.

[mecch]

What do you mean on your "local site" 40-60% have OIs?  who? where? what period?

[Tonny2]

      ojo       Hello amigo Daniel...I think, that you are spending too much time thinking about HIV, get yourself busy, go to the gym or do something else, it is no helpful for you to keep reading about HIV, there is life beyond HIV my friend..just a thought...hugs           arigato            ojo

[DANIELtakashi]

I would like to take this opportunity to thank you both for doing difficult jobs to maintain this forum.
It must be tough to make a decision sometimes.   Some people might say your decisions are too harsh but i disagree to that.   Thank you.

Daniel Takashi

[Joe K]

I would like to take this opportunity to thank you both for doing difficult jobs to maintain this forum.
It must be tough to make a decision sometimes.   Some people might say your decisions are too harsh but i disagree to that.   Thank you.

Daniel Takashi

Daniel,

Thank you for your kind sentiments.  While being a moderator can be challenging at times, overall it's a great experience, because we have such a wonderful group of members.  Sometimes, we have to do things we rather not have to do, but it's all part of our job.  Reality is that not everyone will agree with what we decide and that's fine.

I also want to share with you an attitude that has served me well in my life.  There are things in life that we can control and other things that are simply beyond our control.  If I spend my life, worrying about things that I cannot control, that is wasted energy and it does nothing but drain my being.  Instead, I try to focus on those things that I can control, which reinforces my feelings that I am being proactive in addressing those issues that I may change.

Hope is the fuel of tomorrow, however, such hope must be tempered by the realities of today.  While I empathize with your concerns about your future, you are worrying about things, that you simply cannot control.  It does not mean you stop worrying about anything, it means you learn how to identify those things that you cannot control, so you do not waste your time.  It's about doing everything in your power to control your infection and letting that give you solace that you are doing what is right for you.

Nobody can predict how long we may live, or even how well we might live.  What we can do however, is to make sure that we are using every tool at our disposal to make our life as fulfilling as possible.  By doing that, you are actively treating your infection and it is my hope, that through that knowledge, you will realize, that in the greater scheme of things, the best we can do is what we do for ourselves.

Be careful about only looking to the future, as it can blind you to today.  You are treating your issues, which is what you need to do, however it is no guarantee on what the future may hold for you.  My hope is that you can minimize your fears of tomorrow and have faith in your own ability to mold your own future... today.

Joe

[DANIELtakashi]

Joe,

Thank you very much.
Happy to receive your note.