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Author Topic: Can Someone HELP answer some questions?  (Read 3764 times)

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Offline Humanitarian

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  • Posts: 7
Can Someone HELP answer some questions?
« on: July 28, 2008, 01:03:37 PM »
Hi Everyone,

Just last night I placed my first post, certainly it seemed like an abstract of my book. If you had an opportunity to read it, you may recall that I was waiting for my genotype results. I called this morning and they confirm the results have come in, but the nurse told me that she could not review such results with me, that it would be best for my Dr. to review them with me tomorrow. And of course, I STARTED TO PANIC!!! I asked if my genotype had come back resistant to any meds, and she once again told me that it would be best my Dr. review the results with me. So, WHAT DOES THAT MEAN??? As an over compulsive person, I began to ask more questions and the nurse told me that she is not in position to review such results with me, but that I would be OK and she told me that I will have some options. What does she mean by SOME options???

OK, so I am freaking out and all I can think is that my genotype in fact came back resistant to some medications, but how many is my question? Can it be possible to be resistant to ALL medications? Funny it is that just yesterday I was feeling 'Great' and thought I had my emotions under control, but I guess I was in for a surprise...I AM VERY SCARED RIGHT NOW!!!  I called my therapist, we are meeting later today.

For those of you who have tenure and experience with this virus, its labs, medication regimens, etc... CAN YOU SHED SOME LIGHT MY DIRECTION???  Here are my questions:

1. Can it be possible to be resistant to ALL HIV medications?
2. Can it be possible that other medical conditions, like cancer, be found through a genotype?
3. Should I be concern about medicine resistant, or are their plenty of multiple combinations out there that I will be fine?

I want to go about my day, certainly this emotional status is not helping my immune system, I appreciate any information.

P.S. Please do not think I am going against what I said on my first post, I am actually attempting to take my own advice, but like many, this is still new to me. I also fear, like right now, the fact that I don't want to die, not yet, I have a lot a want to do. I just want to have enough medicine combinations to keep me healthy and suppress this virus so that I can go on with accomplishing all that I want to do in my life.

Thanks,

Humanitarian.

Offline Anna Karenina

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  • Posts: 32
Re: Can Someone HELP answer some questions?
« Reply #1 on: July 28, 2008, 01:26:15 PM »
Hiya! 

1.  It is extremely, extremely unlikely that you are resistant to all HIV medications.  In sub-saharan Africa, where medication compliance is difficult we are seeing strains of HIV that are extensively drug resistant but I am unaware of this happening outside of there (someone please correct me if I am wrong)

2.  Medical conditions such as cancer cannot be detected through the genotype you had done.  Presence of cancer is determined through histopathological examination i.e cut the suspect piece of you out, stain it, put it on a slide, look at it under a microscope to check the cells.  Certain molecular features of various cancers can be determined using genomic methods, to see which genes they are over-expressing or under-expressing (this can help us tailor individual treatment or can be for research purposes), but that is something that would be done to tissue that we already know is cancerous.  Certain alleles (alleles are variants of the same gene) that give you increased susceptibilty to a certain type of cancer (such as mutant alleles of the BRCA1 gene indicated in familial forms of breast/ovarian cancer) also be detected through genotyping, but these are very specific (and expensive) tests and they would not have done that test on you.

3.  Of course it's realistic to be concerned about drug resistance, but yes there are regiments that address this.  And definitely don't worry until you have spoken to your doctor.  I know this is probably impossible but try not to read into what the nurse said too much, she might just say that to absolutely everyone, regardless of their results.

All the best!
Anna

Offline BT65

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Re: Can Someone HELP answer some questions?
« Reply #2 on: July 28, 2008, 02:03:55 PM »
Humanitarian,

I think Anna did a very thorough job of answering your questions.  I just wanted to add that nurses do not usually give genotype results.  They're really not qualified to do this.  Take some deep breaths and have a good visit with your therapist.  I'm sure you have many options available to you, med wise.
  luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline YaKaMein

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  • Posts: 368
Re: Can Someone HELP answer some questions?
« Reply #3 on: July 28, 2008, 06:42:18 PM »
Welcome Humanitarian,
Great posts. Your responses are very NORMAL. There's a lot for you process right now in handling such news. It may seem remote but you will be okay. You're arming yourself very well to best deal ... by gaining knowledge!! Consider finding ways to better deal with your stress and anxieties [get a Rx for something at your appt, like Ativan] as they arise. Here's a article about how stress affects our health I heard on NPR:   http://www.npr.org/templates/story/story.php?storyId=92975996

Another thing I suggest is to get a hard copy of ALL your medical records, i.e. labs, consults, etc. tomorrow. It good to keep a set for yourself. Especially since it seems like you may be looking for a doc closer to you.

Good luck with your appt tomorrow. It sounds like it will go well. Keep us posted.  -YaKaMein
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline wow1969

  • Member
  • Posts: 208
Re: Can Someone HELP answer some questions?
« Reply #4 on: July 28, 2008, 08:24:33 PM »

P.S. Please do not think I am going against what I said on my first post, I am actually attempting to take my own advice, but like many, this is still new to me. I also fear, like right now, the fact that I don't want to die, not yet, I have a lot a want to do. I just want to have enough medicine combinations to keep me healthy and suppress this virus so that I can go on with accomplishing all that I want to do in my life.

I tested POZ about a month ago and I can understand what you mean by wanting to remain healthy to accomplish your goals in this life. My main goal is staying alive long enough to see my son grow up. Today I had the first visit with my virologist. What he told me was very encouraging. HIV is not considered "terminal" any longer. It is now considered "chronic".  For me, this means I can live with it. Then, he told me that with the current medical technology I have a very very good chance of dying from old age and I'm 38 right now. Which means that I have enough time to accomplish my goals in life. I suspect the same is true for you as well. I get my CD4 and Tcell counts on Friday so we will see, but he's optimistic. Hang in there, it will be alright. I don't know about you but I've found that the NOT KNOWING is the worst part of all of this.

Offline BT65

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Re: Can Someone HELP answer some questions?
« Reply #5 on: July 28, 2008, 08:44:09 PM »
Welcome Humanitarian,
Consider finding ways to better deal with your stress and anxieties [get a Rx for something at your appt, like Ativan] as they arise.

Please be careful if you decide to go messing around with pills like this.  As I'm sure you know, they're not a cure-all.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Humanitarian

  • Member
  • Posts: 7
Re: Can Someone HELP answer some questions?
« Reply #6 on: July 28, 2008, 10:20:10 PM »
Hi,

First, I want to say thank you to all of you for your support, I am deeply humble for it.

Anna, thank you for the information, it helped a lot. I must admit, that although I have nothing to worry, the fear is still there. Nonetheless I want to thank you because the level of stress did come down a notch. I did meet with my therapist today and the session went well...I came to conclusion that my over compulsive demeanor it's what is pushing me to think the extream in regards to negative thoughts and because I am used to have control over what occurs t me, this time I simply have to be patient and wait. Anyway, I am feeling somewhat better, I came back home and took a 2 hr. nap, now here I am typing away.

Betty, thank you for also providing feedback, it was good to know that nurses don't usually give genotyperesults, that it self made me a little less worried. Also, I tried not to read too much into what the nurse said in respects to the comment "Some Options"...as my sister told me, that's more than one option.

Yaka, thank you for the link to the audio regarding stress and how it affects the immune system, very informational. Also, thank you for the advice, but personally I am trying to stay off any meds that I don't need to take, I feel that it will interfere with those meds I should focus on making sure they are working. I could be over analysing things, but I am ok, based on what I read form everyone, its just normal to feel anxious over the unknown.

Wow1969, I hear you man, I too got the same type of feedback from my virologist, and you would think that I should capitalize on such information, but as you said, the hardest thing for me is the NOT KNOWING what needs to happen next. As it is I was never a patient person, I guess this is something I will need to learn to get through my years up ahead. Now, I can relate to you in wanting to live long enough to accomplish our goals and although I am right now feeling uneasy, there is a part in me that I am starting to feel that everything will be ok.

So, as I look at the rest of my day, I am planning to just relax and watch some tv, maybe catch up on some Grace Anatomy episodes that I have missed in the last four weeks. I will attempt to have a good night sleep, and go meet my dr. tomorrow first thing at 8:30am. I will keep everyone posted as to what the genotype results were and what the plan will be moving forward.

Once again, thank you, thank you, thank you...

Humanitarian.   :) 

Offline Anna Karenina

  • Member
  • Posts: 32
Re: Can Someone HELP answer some questions?
« Reply #7 on: July 28, 2008, 10:48:29 PM »
Hey I'm always happy to help a fellow obsessive compulsive out lol (wouldn't mind knowing when they are going to find a cure for THAT particular problem)
Glad to hear you are feeling better
All the best!

Offline YaKaMein

  • Member
  • Posts: 368
Re: Can Someone HELP answer some questions?
« Reply #8 on: July 29, 2008, 12:43:15 AM »
Consider finding ways to better deal with your stress and anxieties [get a Rx for something at your appt, like Ativan] as they arise.

So, as I look at the rest of my day, I am planning to just relax and watch some tv, maybe catch up on some Grace Anatomy episodes that I have missed in the last four weeks. I will attempt to have a good night sleep, and go meet my dr. tomorrow first thing at 8:30am. I will keep everyone posted as to what the genotype results were and what the plan will be moving forward.

So there's no misinterpretation Hum and Betty ... your quote Hum is exactly my intention, ways to reduce stress and anxiety ... when exploring options don't exclude chemical assistance [isn't that what HAART is?]. I have thirty Ativan and may take two [2] a month, hardly abusive ... point being they're there if I need a little help. Obviously, you will learn your body and what you're willing to do or not with the advice of your physician. Methinks, you will be just fine .... I'm betting on it.

Ditto for Wow1969 and Welcome to the forums too.

Have a great appt and give yourself time to process information.  -YaKa
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline BT65

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  • Posts: 9,955
Re: Can Someone HELP answer some questions?
« Reply #9 on: July 29, 2008, 10:19:22 AM »
So there's no misinterpretation Hum and Betty ... your quote Hum is exactly my intention, ways to reduce stress and anxiety ... when exploring options don't exclude chemical assistance [isn't that what HAART is?]. I have thirty Ativan and may take two [2] a month, hardly abusive ... point being they're there if I need a little help.

Yaka, I was not trying to imply that you're abusing the Ativan.  But I feel that advice about meds like that one should come from a dotor (or really advice about specific meds in general).
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Philly1972

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  • Posts: 40
Re: Can Someone HELP answer some questions?
« Reply #10 on: July 29, 2008, 03:15:12 PM »
Humanitarian,
We are very similar - I also just learned I was pos and had all the same anxieties waiting for those first test results and also thought the worst.  Like you my obsessive compulsiveness was making it worse.  I expressed my fears to my doctor and he calmed me a bit by telling me that only about 10% of new cases he sees are resistant to ONE medication and that he has yet to see one resistant to many - AND that there are lots of options out there even if one is removed and that he has yet to find a treatment for any of his patients that did not get their HIV under control.  And this comes from one of the best doctors at University of Penn.  I got my results yesterday and everything was great (CD4 700; VL 2420) and NO resistance.  I'm certain it will be good news for you as well.

Won't your doctor speak with you over the phone knowing that you are so anxious, considering the results are available?

Offline Humanitarian

  • Member
  • Posts: 7
Re: Can Someone HELP answer some questions?
« Reply #11 on: July 29, 2008, 08:43:21 PM »
Okay, where do I begin??? Oh Yeah, by saying: "It' All Good"...   ;D

My appointment was this morning, and as I suspected, by blood pressure was high, talk about been scare and anxious. As I sat in the exam room, I could not control my fears and even started to cry, but all that went away when my dr. came in and told me that my genotype results were 100% non-reactive to any medcations, old or new. PRAISED THE LORD!!!!  I once again felt relief and had tons of weight lifted from my body, specially my neck...I guess when you are stressed it all builds up right there.

The consultation lasted 2 hours, we discussed medical treatment and choose to start with Atripla; I take my first one tonight. I am schedule to see him in 30 days and draw labs to review my progress. He also reviewed all other exams and did one more physical exam, and everything was perfectly fine. My dr. re-confirmed that I will be able to live a normal and healthy life and that I should not worry about anything...that I will grow old and die of old age. I asked more questions regarding the short-term and long-term affects of Atripla and felt very good about this choice. My dr. made me feel part of the proces and the determination of the direction we are both taking to restore my immune system and control this virus.

Overall, I had a great visit. I will be flying back home in one week (can't wait, I miss my bed...LOL) and will fly back in a month. My choice to be treated out-of-state was a good choice (for me), the cost of my round-trip plane ticket its all worth it since I have full medical & medication coverage, it'off-sets the expense. Anyway, I am grateful that we have now in days great medicine and treatments, and that been HIV+ is ONLY having a chronic illness...I am looking forward that Atripla will work for me and together we fight this virus!!!

Thank you to all of you who gave me words of encouragement yesterday and gave me strength to get through my day. Betty, you are right, nurses are not allowed to give genotype information to patients, thank you for that piece of advice.

I will stay in touch and will now begin to post in the forum "Living With HIV"...look for my updates in this forum. I once again thank you all for everything, you were ablessing to my life.

Take Care,

Humanitarian.

P.S. After a long month of waiting and havig to undergo a rollercoaster of emotions, I am off to Nordstrom to do some crazy shopping and then go watch the movie "Mama-Mia"...I DESERVE IT!!!!   ;D

Offline BT65

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Re: Can Someone HELP answer some questions?
« Reply #12 on: July 29, 2008, 09:02:14 PM »
Humanitarian,

Great news about the genotype results.  Have fun watching "Mama Mia."  There's a thread about it in "off topic."  I'll look for your posts in "living with."
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

 


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