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Author Topic: One Year and counting  (Read 3663 times)

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Offline Orez

  • Member
  • Posts: 14
  • Remembering Everyday the Error of One Day
One Year and counting
« on: May 09, 2017, 06:08:24 pm »
It has been a year and and three months since my diagnosis.  I am currently on Genvoya and so far doing well.  The dizziness that I had when first starting Genvoya seems to have faded away.  Headaches that I get I do not believe are related to Genvoya as that to seems to have faded away.  My headaches now are more related to my sinuses.  On my last test results I have high cholesterol and now on two meds a day (including Genvoya). My doctor is optimistic that I will live to see a cure for HIV.  Me on the other hand am pessimistic.  I believe someday there will be a cure but not in my lifetime at least at an age in my life where it would matter anymore.  Mentally I am stable as I have been in dealing with other issues in the past.  The only difference is that past trials have past and this trial has no end.  I have still not disclosed my status to anyone and have been with no one since my diagnosis.  I just recently tested and below is my full test results to date.  Even though I do not think I will see a cure I would like to see a weekly or monthly treatment option become available.  I do not like having to take a pill everyday for the rest of my life.  I guess that is only for time to determine. 

2016 Feb 15 --- CD4=700; VL=8329600; CD%=38.9 started Stribild
2016 May 4  --- CD4=?;    VL=90;          CD%=?    Stribild
2016 Aug 27 --- CD4=810; VL=80;        CD%=35.2 Stribild switched to Genvoya
2016 Dec 17 --- CD4=772; VL=<20;      CD%=38.6 Genvoya
2017 April 15 -  CD4=905; VL=40;         CD%=43.1 Genvoya
2016 Feb 15 - CD4=700; VL=8329600; CD%=38.9
2016 May 04 - CD4=?;    VL=90;     CD%=?     Stribild
2016 Aug 27 - CD4=810; VL=80;    CD%=35.2 Stribild
2016 Dec 17 - CD4=772; VL=<20;  CD%=38.6 Genvoya
2017 Apr 15 - CD4=905;  VL=40;    CD%=43.1 Genvoya
2018 Jan 04 - CD4=1458; VL=<20; CD%=48.6 Genvoya
2018 July 07- CD4=1264; VL=<20; CD%=48.6 Genvoya

Offline LeftyBowler300

  • Member
  • Posts: 106
Re: One Year and counting
« Reply #1 on: May 09, 2017, 08:04:27 pm »
Hey Orez!

Have you thought about joining a support group? I've thought about it, although I haven't yet. Maybe that could be an opportunity to meet new people and network.

Lucky for me I've taken a multivitamin and allergy pill every day for most of my adulthood, so I'm just tossing an extra pill in the routine that I already have. Maybe taking a multivit, allergy med (to possibly help sinuses), and perhaps a probiotic would cushion the burden of taking Genoya every day, since you'll be taking many pills every day for the purpose of better health! That could make staying healthy feel a little more like a proactive want than a necessity for staying alive.
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 Orez

  • Member
  • Posts: 14
  • Remembering Everyday the Error of One Day
Re: One Year and counting
« Reply #2 on: May 09, 2017, 09:16:17 pm »
Lefty,

ya found my post  :D  Yes, I have thought about a support group and was told of one from day one.  I did just go to my first meeting last week.  I was already off work to see my IDS and thought since I was in the area, why not.  They wanted me to start coming regularly but I work and that is not possible.  I am scheduling my next IDS appointment for same day they have meeting and will go again.  from what I got out of group was the help goes both ways.  You go for support by being with those who have gone through or are going through what you are.  You are also their support because they see you as someone who is going through what they are.  It is good to know there is a place where you can openly talk about what you are going through and they understand because they are too.  It is also good to be there for them.  If not for my job I would go more often.
« Last Edit: May 09, 2017, 09:20:51 pm by Orez »
2016 Feb 15 - CD4=700; VL=8329600; CD%=38.9
2016 May 04 - CD4=?;    VL=90;     CD%=?     Stribild
2016 Aug 27 - CD4=810; VL=80;    CD%=35.2 Stribild
2016 Dec 17 - CD4=772; VL=<20;  CD%=38.6 Genvoya
2017 Apr 15 - CD4=905;  VL=40;    CD%=43.1 Genvoya
2018 Jan 04 - CD4=1458; VL=<20; CD%=48.6 Genvoya
2018 July 07- CD4=1264; VL=<20; CD%=48.6 Genvoya

Offline awakening

  • Member
  • Posts: 146
Re: One Year and counting
« Reply #3 on: May 09, 2017, 10:14:40 pm »
Orez,

Thanks for sharing your story. I too am upcoming up on one year since diagnosis. Your regimen seems to be working very well for you, you have strong numbers. Glad you reached out for the support group, it's important to remember you are not alone. I'm in a gay men's support group (just one other poz guy in the group). Sometimes I go in feeling like I've got all the troubles, but everybody has their life challenges and I often leave the support group with a different perspective after being reminded we all have personal struggles.

I agree with LeftyBowler about taking some gentle supplements like a multivitamin can help camouflage the feeling of pill popping. I take a basic men's multi and a couple of fish oil pills each day (usually on the opposite side of the day from the ART). So it really all blends together. And for your high cholesterol, there is some preliminary documentation of benefits of fish oil for those living with HIV.
https://www.ncbi.nlm.nih.gov/pubmed/18162734

Here's to a healthy and happier new year.
~~~~
[month/date/year]
3/1/16: Tested neg (Oral swab)
6/17/16: Diagnosed poz (finger prick), confirmed w/Multispot assay
6/17/16: VL 22,900, CD4 - 524 cells/uL (30%)
7/2/16: Started Triumeq (DTG+ABC+3TC)
8/1/16: VL 30
10/4/16: VL <20, CD4 - 630 (31%)
1/4/17: VL 90
2/7/17: Undetected
4/17/17: Undetected, CD4 - 695 (33%)
7/20/17: VL 75
8/21/17: VL <20
11/27/17: VL<20
3/26/18: VL<20, CD4 - 701 (36%)
5/14/18: Switch to Juluca (DTG+RPV)
6/11/18: VL<20
7/25/18: Undetected, CD4 - 632 (38%)
1/22/19: VL<20

Offline harleymc

  • Member
  • Posts: 1,524
Re: One Year and counting
« Reply #4 on: May 20, 2017, 09:24:54 pm »
Good to hear that you are doing so well.

I do understand your ambivalence about taking a pill for the rest of your life I've heard that from a lot of people over the 30 years+ that I've been diagnosed.

I take a similar attitude to Orez, that my HIV medications are about enabling me to have a healthy life where I can participate in work, volunteer, play sport...
So I have built up an association that the medications are about being well and leading a full life.

Even tho a 'cure' (whatever that might be) is probably a long way off for us  people living with chronic HIV, there are some fairly well advanced studies looking at long lasting injectables and implanted pumps. So we may be  reaching a point of go and see your ID doctor one or twice a year and get a shot in the bum or a little implant under the skin.

I'll still need my vitamin d and my antidepressant daily, so not much change for me either way.


Offline Tonny2

  • Member
  • Posts: 2,939
Re: One Year and counting
« Reply #5 on: May 25, 2017, 09:07:47 pm »



       ojo        Hello Orez....I'm happy to hear you are doing fine and congratulations, you have great numbers....I'm sorry you having been able to date since your diagnosis, I hope you can find help in that support group and overcome the fears of meeting someone and go back to a normal life...best wishes, and, it doesn't hurt to think that the cure is almost here, you are on a one a day treatment, which I call it a "virtual" cure. I still have to take four pills twice a day, and I'm grateful those "vitamins" are there for me...hugs                                                                                     ojo                         

 


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