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Author Topic: Been there a few times...  (Read 2364 times)

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Offline Alain

  • Member
  • Posts: 680
  • I am.
Been there a few times...
« on: December 15, 2006, 06:32:49 PM »
... but this time it feels different. Actually I was quite surprised to see my latest labs results. My October numbers were CD4 320 @ 21% and undetectable. This week I am at CD4 120 @ 13% and the viral load is creeping up. This old geezer numbers have changed so fast. I had no choice, both my Dr. and I decided to stop all med's because of my kidney function and high liver enzymes. My hearth was also working double time.

Over the years, I have been on every med's available to us and unfortunately, I do get resistance quite easily. So now it is the waiting game, hoping that something new will come soon. There is no going back on older ones, but failing to get on anything will results in getting those OI's back quickly.

In Canada Darunavir was available to us as of last August, but it looks like I will not be able to go on it because it is a sulfa based drug. I am highly allergic to it. Atripla is not yet approuved for us, unless I can get on a special drug compagny program and I think that there is Sustiva in it. I have started Mepron and my doctor told me to still take 3TC so that I can keep it working for later on. (next combo)

I don't know, but after all those years (20) I have managed to stay afloat and gave it my best shot. Now I can't help feeling a bit squeezed and in a corner. To my surprise, I do not feel depressed as such and down about it, it is like surreal in a way. It is nagging at me though, I am 48 this year and will I see 50? I am not dwelling on numbers but I can't shake that thought out of my mind right now.

And there is Xmas. Not my favorite time of year only because every major events of my life just happened around this time. Also this is my first Xmas having loss all my hearing, and I am missing the music terribly. I just can't see myself getting in the mood and to the point where, I will be in acceptance of it. It feels beyond my capability somehow.

Got my HPV worrisome spots (2) removed by laser on November 14. It was very painful (the freezing part depending on where they are located, mine must have been in the worst possible place) and the outlook of that is very positive according to my oncologist. Still have to get 2 biopsy on January 30, but this way of treating is the best and most effective.

Anyways just keeping in touch, and to ALL of you and family alike, I wish and hope for a wonderful Holiday Season and the most happy and healthy 2007 ever. :-*   
« Last Edit: December 16, 2006, 08:19:50 AM by cowandalehouse »

Offline Eldon

  • Member
  • Posts: 2,664
Re: Been there a few times...
« Reply #1 on: December 15, 2006, 07:06:43 PM »
Hello Cowandalehouse…

I read over you post and from what you have described, there is a lot of things that are going on in your life right now. It is good that you have taken the initiative to get it out in the open and to share it with the other members here. As far as your numbers are concerned, there may be an optional treatment that is available for you. You may want to consult with Gerry or Newt on the particulars.

For Atripla, you may want to correspond with your ASO in your area to see if there is a program that is available in which it can supply this to you. As suggested you can also consult with your ID Doctor to see if there is any other solutions that are available for this option.

Due to your inner strength and your will, it has kept you through all of this through the years. I’d like to encourage you and share that it will also continue to do the same for you even in the midst of it all. Granted, the situation does present a boxed in feeling to you. However, it is your inner strength and your will to thrive on in your life. Keep that inner determination close to your heart.

True enough it is also a bit nagging to you due to the circumstances. Just keep in mind that you are still in control of the things that you can change in your life. You will always have that control. It is how you choose to react to the other situations which lead to how the outcome will be. 

During the season, it is an unfortunate instance that these situations are occurring in your life right now. With your hearing loss, this is also a tremendous impact on your desire to get into the mood. You may want to try viewing Christmas videos, cards, poetry, and the like to help offset things. Again, it is all within you and I encourage you to do what you can to make the best out of it.

It is good that the outlook is positive on your situation with the HPV. Your oncologist has sought out the most effective treatment that is available to you.

I thank you for keeping in touch with the group and I also wish you a wonderful Holiday Season in spite of and a Happy New Year as well.

I am sending you some positive energy along with good positive thoughts and you are in my prayers as well. Take care of YOU.

"Don't Give Up, Don't Give In... Cause it is ALL within you to WIN!"

Offline Teresa

  • Member
  • Posts: 1,754
Re: Been there a few times...
« Reply #2 on: December 15, 2006, 07:31:52 PM »

You know I love you and you are in my thoughts and prayers!

Hubby HIV+ 5/5/06
  %: 26.7
 VL: <20
Atripla (started it 8/24/06)

Offline Longislander

  • Member
  • Posts: 2,489
Re: Been there a few times...
« Reply #3 on: December 15, 2006, 11:58:19 PM »
Alain, I'm sorry you're going through a rough time. i'll be keeping you in my thoughts and hoping something comes along for you very soon.

infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Been there a few times...
« Reply #4 on: December 16, 2006, 07:18:04 AM »
Sending you a virtual (((HUG))) down the Rideau River from Ottawa and across lake Ontario to you if it helps at all.




Offline Dachshund

  • Member
  • Posts: 6,058
Re: Been there a few times...
« Reply #5 on: December 16, 2006, 07:27:04 AM »
I believe Altripa is Sustiva and Truvada combined in one pill. Hopefully something will break your way medically and you can get off the HIV roller coaster ride very soon. Please keep us posted.

Offline poet

  • Member
  • Posts: 934
  • Poet living and working in Central Maine
Re: Been there a few times...
« Reply #6 on: December 16, 2006, 07:49:42 AM »
Alain, there is nothing that I can say or do other than wishing you strength from somewhere to keep yourself on an even balance while you see what options you may have.  Yes, of course, this would all happen during the holidays and I unfortunately can get just how difficult it is to be locked out from the sound of the season with your hearing loss.  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline allopathicholistic

  • Member
  • Posts: 3,258
Re: Been there a few times...
« Reply #7 on: December 16, 2006, 07:51:20 AM »
HI ALAIN - sending hugs & prayers. please hang in there as you have been doing, new meds will be coming

Offline Blixer

  • Member
  • Posts: 712
Re: Been there a few times...
« Reply #8 on: December 16, 2006, 01:33:24 PM »
You will be in my thoughts and prayers.   Hopefully something will break though that will let you find an effective treatment.  You have had a long road of it.  I know sometimes it must be very frustrating.  You obviously have lots of support here!  Best wishes!
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40


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