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HIV Life >> I Just Tested Positive

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Starting on Treatment and maybe Trials
      #167504 - 12/21/05 12:10 AM

I am looking for a few answers and I hope someone may be able to help. Me and William are now in our fourth month of our diagnosis. Our HIV specialist in Denver has been so supportive of both of us during this time. Just remarkable. I asked him 3 weeks ago about seeing him after the first of the year to get another set of labs done at least for me which he recommended. William has better numbers than I. Mine were bouncing around a bit because of probably the guilt, anxiety, stress, you name it. But now I know what’s up and what is in store for us. Dr. Ben feels that there is justification that meds will start in the “Near Term” which I guess means soon. He originally wanted us to perhaps start together? This would facilitate taking care of each other. However, I personally would rather blaze the trail first so as Will can help me if there is any problems with meds. Then after I get started William can start later and I can help him.

I have had two base line tests and William only one so far. We also had a test for resistance and the outcome was we both have a “Wildcard drug susceptible virus”. I believe that this means that this is a virus that reacts very well to medications that are available.

I have also wanted for us to enroll in clinical trials in order to help us learn about HIV as well as the close monitoring that will be given to us and counseling free of charge. It won’t cover all the medications, but will cover all of our labs for two years. Dr. Ben says these are all FDA approved and in no way will harm our abilities to live a long life. Let me ashure you we trust him with our lives and have heard nothing but outstanding things about our doctor. So, I don’t think we are putting ourselves in any risk. Just curious if anyone else has gone through clinical trials like this? We both have outstanding medical insurance so we could opt out of trials and just do it through insurance. But, I like the idea of being closely monitored and having counseling as we get into this more. Our doctor also says that his patients in fact do better with adherence and understanding what’s happening after their two year term expires.

I want to do this right. We have one chance at this. The first set of drugs are the ones that do the best and I do not want to muck this up. As the trials start at CD4’s approaching the 300 mark, I maybe there by the time January 7th comes around which is our next visit.

My biggest wish for Christmas is that my numbers would not be ready for meds come January 7th. Just a bit fearful and apprehensive.

But – I am looking at this as its going to happen sooner than later so whatever happens, happens.

Still bit nervous.

I really would just like to enjoy Christmas and the new year without thinking so far out in he future. No Day But Today… This appointment makes it hard to do that!

Happy Holidays To Everyone!


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Anonymous
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Re: Starting on Treatment and maybe Trials new
      #167539 - 12/21/05 03:46 PM

Hi. I really don't think you need any advice... maybe just some reassurance. So here is my crack at it. You sound very level-headed and it is obvious that you have thought this through. I think you'll make the right decision no matter which path you take. You don't mention what meds the trial involves or what their treatment plan is. Will there be scheduled treatment interruptions or is it a double-blind trial?. These are the things I would consider. How new are the drugs and what is there safety profile? You sound like you have a handle on things. Just make sure you do your research and ask your Doc heaps of questions at your next visit. Best of luck!

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debtex
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Reged: 03/21/05
Posts: 846
Re: Starting on Treatment and maybe Trials new
      #167542 - 12/21/05 04:41 PM

Hi Eric....
I'd be interested to see what others had to say about this...and anytime with hiv--the change of medication is one that I feel is a heavy weight.....because its scary. The NOT knowing what will happen, what is the right thing, or what to expect. But I work in a major hospital where they are always doing clinical trials. I personally feel trials area great option. Yes, these meds are all fda approved....and usually you have to come in weekly for labs & adherance. (which I feel is great, because its so helpful for a nurse to see where you stand,not only physically, but emotionally as well).. and always keeping in mind that your physician is constantly informed on your results and well being. another great thing about them...is YES, the medication and the treatment/lab work are free to you. (even as the trial near ends the hospital helps you obtain insurance....atleast at my clinic they do).

I've spoken to many people (hundreds) who start off in trials, or sometimes go into a trial for other reasons....long after diagnosis. since you guys have already had your resistance test and you dont show any resistance I think you would be a great candidate for a trial. The "unknown" is always scary. whether you were doing this thru your insurance or not.....but what is a bit more comforting is you are followed so closely (like I said..usually weekly), it helps to see what is actually going on with your numbers.

I dont think your physician would steer you wrong. I'd be a bit more leary, or nervous had your resistance test showed any resistance to some mediations. but you would be staying on treatment for atleast 2 years, which I think is great, because alot of people.....even after making that tough choice go thru all the emotions, and stop after a few months/or weeks, just because of some diahhrea or little bit of nausia! and if your body truly cannot tolerate it, or your liver functions tests become out of wack...they will take you off those medications.

Do you know what some of the trials are? Like what medications you may be taking and stuff. You may be surprised tho when you go back in January.....your cd4 may be much higher than before. When I was initialy diagnosed, my cd4 was first time only 298...then 309...so my pcp also suggested a study, which I was willing to check out...was about 4 or 6 months after the last tcells which was 309...and my tcells were over 500. Please be sure and take it easy over the holidays. Dont worry your mind so much about your numbers. you are really in great condition. what you should think about this christmas (and if I know you.....I know you will). observe the love that surrounds you. I know for me, the first christmas when I was diagnosed was so different then any other.....because of all the love I was fortunate enough to have.....and finally after looking for love the wrong way all my life--i finally had ALL that i needed in life. I was actually so overwelmed with my life that there were moments of tears of JOY for all that I had.

I love you much eric. keep me posted. i'll be with you all the way. be sure to tell me all the details of the study. but really...enjoy your holiday--the choice of meds are scary...but I assure you, Dr Ben will take good care of you.

talk to me soon...

love to you,
prayers, and love,
debbie

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shadesofgrey
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Reged: 12/02/05
Posts: 724
Re: Starting on Treatment and maybe Trials new
      #167551 - 12/21/05 07:36 PM

Eric, i hope your christmas wish comes through. Even though i know you will handle it no matter what, you seem very brave and level headed , the option of trials sounds great , I was in a trial one time for something unrelated to hiv and they treated me like gold . by the way i am one of those people who is sitting on the fence and still haven't tested from possible low risk exposure. I am truly frightened but while i read your post and others here feel very much like a coward. hope you and your partner have a beautiful christmas. will keep you in my prayers.

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Starting on Treatment and maybe Trials new
      #167554 - 12/21/05 08:21 PM

Hi ya... You know what? What ever happens when I go on meds. I am at peace with it. There is absolutely nothing I can take back. I can only plow forward and hopefully with that, will come strength, new friendship, new understandings about what life is, appreciation of everyone who is dealing with this. I know I am not alone. I know there are those like you who are worried about possiblly being exposed. But you know life is full of worry. Dang if its not hiv, its the next mortage payment, is it the boss who does not like me (mine love me) etc. I have to overcome this. Dont think of youself as a coward. If anything, this time is going to propell you out into the forfront of having the courage to hang in there. There is always door that is opening, ALWAYS, but you have to choose to go through it. With me, Its just a matter of going. I have no choice here. I want to go on living.

There is no future,
there is no past,
thank God this moments not the last.
There is only us,
there is only this,
forget regrets,
or life is yours to miss.

No other road,
no other way,
No day but Today.

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Trials vs Studies new
      #167555 - 12/21/05 08:26 PM

Maybe I am just confused between Trials vs Study's??
Here is a small quote from my doc...


Snippet..

Indeed, if you choose to go via the study route (certainly the most
financially prudent with regard to your costs, as you mentioned), we'll
get one more set of labs before starting (with the option to not start
if the labs show something contrary). I do believe that patients often
do better in clinical studies because of the more intensive monitoring,
adherence counselling and time with the healthcare team. Studies that
we have ongoing are ones that use FDA-approved drugs, and are ones that
are aimed at testing popular combinations head to head.

end of snippet...



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debtex
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Reged: 03/21/05
Posts: 846
Re: Trials vs Studies new
      #167570 - 12/21/05 11:10 PM

from what I know.....I believe clinical trials and studies are one in the same. I know when its being discussed in work, they will talk "clinical trials" or study. Now, I am confused. I am asking Dr Robbins tomorrow. (my boss, one of the head docs on studies/trials....which I think/thought was the same).

(:

love & prayers,
debbie

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Survivor
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Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Trials vs Studies new
      #167575 - 12/22/05 12:19 AM

Thanks Debbie... You Nurse YOu! I feel Dr. Ben will put us on studies he knows will work for both of us. We will fully understand all this when we see him. He wont jeaprodize our health in anyway. I know this.. If its not for us, well thats why we have insurance..

Love

Eric

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Starting on Treatment and maybe Trials new
      #167576 - 12/22/05 12:23 AM

shadesofgrey...
One thing I know, your worry will never deminish.. Ever.. But if you test, you will know. You will have time to make decisions if its positive. But you know by reading, low risk exposure is exactly what it is. Low Risk. You have a very reasonable posibility of being negative.. Just go get it done. Dont be scared.. We will hold your hand and your not alone.. Ok?

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