Author Topic: New Member to am forums (Read 4753 times)

poznlongbeach · « **on:** January 06, 2007, 02:50:17 pm »

Hey everyone-

Hello, my name is Tony and I've been reading the post here on am for a long time. I finally felt the need to join the other day. I would talk to my friends but some of them are mad at me for not being on meds sooner you see I have been HIV for a long time (1995) with no problems, a very high tc count and a undetectable viral load. After all these years I thought I was going to be OK. That all changed for me in August 2006. My friends said it looked like I was losing a lot of weight and I wasn't feeling like myself. I also notice a lesion on my leg but really didn't think much about it, then I got another lesion and I had a flash back to the 80's. I said" It can't be KS" I had not seen anyone with KS in years. So I made an appointment with my ID doctor. Of course it took 3 weeks to get in to see him but I finally got in. First thing was to get my weight i was at 129lbs. I just about fell over I'm normally at 168lbs. I could not believe I had lost 40lbs. Then it was time for blood work, I hate needles, but got to do what you got to do. Then time to see the doctor and show him the lesions. Of course he told me what I already thought but we had to schedule a skin biopsy to make sure. So another few weeks pass and I go in for the skin biopsy and to find out what my blood work is. It's September 30 2006. More bad news.....TC count is 11 and viral load is <900000. My ID doctor tells me I now have full blown AIDS and gives me a list of what meds I can take. We deside on Kaletra and Travada with Bactrim for any oi's and copazine and lonox for any side effects. Next stop skin biopsy. Mind you I now have 16 lesions with a new one every 10 days. Have the biopsy and on my way home I stop by the drug store and pick up my meds. I started my meds on October 1 2006, day 1 not bad day 2 feeling worst day 3 sick as a dog and feel that way for almost three weeks. All I wanted to do was climb under a rock and ........ Finally around week 3 I start to tolerate the meds good thing because I have a ID appointment to get blood work and to get biopsy results. It's offical I have KS. Flash forward It's December 1 2006 have a ID appointment to get latest results of blood work. Some good news my TC count is 68 and viral load is >750000 the meds are working. Some bad news the KS is now up to 26 lesions and has spread into my lymphatic system. We were hoping that being on the meds would stop the KS but it is now time to start Chemotherapy. Well I started chemo(Doxil) on December 14 and then again on January 4 2007 with treatments every three weeks. Some more good news the chemo is working no new lesions and the ones I have are smoothing out and I'm not loosing my hair.

So here I am Saturday, January 6 2007 spilling my story for the world to read.

I have a ID appointment on Monday January 8 2007 for blood work to see if things are better I'll post my new lab results when I get them. It's funny I feel better just letting this all out. Thank you for taking the time to read my story. Any feed back would be nice.

Peace & Magic Always,

Tony

thunter34 · « **Reply #1 on:** January 06, 2007, 03:05:22 pm »

Hey, Tony

I am glad the meds are helping the VL and TC's, but I am unhappy to hear that it hasn't helped in the KS department. Glad you are here with us, though. Please keep us posted on how everything goes with the treatments and doctor visits. My VL was sky high when I started meds also...so I understand that it may take several months to get the VL down low or undetectable. I also know the story about getting adjusted to the Kaletra and stuff. It took me ages to physically adjust to the pills. I would get sick from even seeing the bottles. I got such a mental association with the pills and sickness that I literally had to block view of them with my hands to keep from throwing up. Fortunately, most of that tribulation has passed.

Again, glad you are here. Please keep us posted & we will keep you in our thoughts.

Tim

jntmax39 · « **Reply #2 on:** January 06, 2007, 03:07:30 pm »

Hey Pozn
Welcome,sounds like you"ve been threw alot. I was wondering why your doc didn't put you on meds sooner or did you make the choice not to start meds?
I hope everything works out for you,stay strong and let us know how your doing.
Most of the people on this site is very kind and very knowledgable.

Blixer · « **Reply #3 on:** January 06, 2007, 03:09:30 pm »

Tony,
It is always great to learn a bit about the people here. Welcome to the forums in your new capacity. I hope your ID doctor gets a good plan in place for you and you get back on track soon. Health issues can be so frustrating. Best of luck!

Boo Radley · « **Reply #4 on:** January 06, 2007, 03:11:33 pm »

Tony,

All I can say is "Wow!" You've certainly been on a wild roller-coaster ride these last few months but it sounds like you made it to the doctor in time, thank goodness! Some people are not so lucky.

I'm sure you can expect to see more encouraging results as the months pass but right now you obviously have issues to focus on. I'm ignorant about the chemo for KS but hope it's not too hard on you. It's great that your med side-effects are under control and your last blood work is promising. A T cell count of 11 is nothing to play with and it's amazing you didn't get any other opportunistic infections besides the KS, although that is quite enough to deal with.

Probably your doc and knowledgable friends told you to make sure your nutritional intake is good and to increase protein intake while putting weight back on. If you are up to it working with light weights can help to increase lost muscle mass. Any type of exercise is good but don't overdo it.

Please excuse my rudeness but I have 40 extra pounds I'd be glad to give you but you aren't interested in 100% fat!!

Continue to take good care of yourself and you'll soon be back to normal (or as close as possible). Good luck!

Boo

J.R.E. · « **Reply #5 on:** January 06, 2007, 03:14:25 pm »

Hello Tony,

Welcome to the forums, and thanks for "spilling" your story. Your going through a rough period, I can tell. Your story sounds very similar to mine.

I was diagnosed HIV positive in 1985, and began medication in October of 2003 with 16 t-cells and 500,000 viral load. I remember very well how I felt then. I also remember friends of mine telling me in July of 2003 that I was losing too much weight. They also got a little upset with me, that I had let things go on, for so long, before starting treatment. So, I am very familiar with that also. I had lost 30 pounds over a ten month period.

The thing now is, you are being treated, your t-cells have improved, your viral load has dropped. Your gonna have to be patient Tony. Things will take time. I am not really familiar with the treatments that are available for KS, but there are treatments available. Others can help you out more in that area, but you state that the chemo you are on, is working , that there are no new leision, and the other ones are improving, so that is great news. It's tough,... your definitely going through a lot right now, and things will take some time, but they weight should start coming back on, and your energy levels should start coming back. I also sense from your post, that your beating up on yourself up a little bit. I know that feeling, I did also. Don't be so hard yourself.

Wishing you the best at your appointment on the 8th. Do keep us updated, let us know how things are going, and if you have questions, don't hesitate to ask. You say you've been reading the forums for a while, so your probably familiar with a lot of us.

Hang tough---------Ray

FiercenBed · « **Reply #6 on:** January 06, 2007, 03:45:19 pm »

jeeesh.... i know the story. seems like every time i go to the doc therez a set back. iv NEVER gotten good news from any doc & iv cn a few. iv goten to the point where it really dosnt phase me anymore. itz odd not just to be bitter about the hiv but also those who r undetectable and pop a few pills and move on. i finally get to c the dermatologist in feb after a 3 month wait. i just know itz gonna b the ks cancer thing. my doc said 'well just touch it up with a little bit of radiation", like itz cover girl or something. im like when is this gonna stop?

anyway the point to all this babel......hang tough....itz gotta end sometime.

marco23 · « **Reply #7 on:** January 06, 2007, 03:49:44 pm »

Doesn't it feel better when you post your feelings...feels like a weight has been lifted huh.

Thank you so much for sharing your story. When I had gotten sick four years ago, I had also lost so much weight. I usually weigh 175 and had gone down to 150 in a course of three months. I was physically exhausted everyday, just to get through a day at work took all my energy. After going to the Dr. and having blood work, hearing him say I was classified as having AIDS I felt as if I was hit with a brick - again. Now with meds, everything has gotten so much better - I'm even up to weighing 180! - I blame the holidays, all that food and beer, who knew that would make me gain weight!

Please keep us posted....so glad you're here.

.
This is why we're here - to support!
Big hug going out to you..

poet · « **Reply #8 on:** January 06, 2007, 05:17:35 pm »

Hey Tony, welcome to the active part of the forums and thank you so much for 'spilling' your story so that we can be more helpful to you as you work your way through the meds and chemo. Keep us posted as you can. Lot's of luck to you! Best, Win

Queen Tokelove · « **Reply #9 on:** January 06, 2007, 05:20:19 pm »

Welcome to the forums.....

Teresa · « **Reply #10 on:** January 06, 2007, 05:26:37 pm »

So glad you decided to join and tell us about yourself. Glad to hear the meds are working and no new lesions.

Keep us posted!

Hugs
Teresa

anniebc · « **Reply #11 on:** January 06, 2007, 05:38:42 pm »

Hi Tony

There is not more I can add except to say welcome to the forums..you have certainly had to travel through some rough seas but at least the horizon is looking a lot calmer, thanks for sharing your story with us..hope to hear more from you and fingers crossed that everything you are dealing with just keeps getting better.

hugs
Jan

rick21007 · « **Reply #12 on:** January 06, 2007, 06:23:46 pm »

Hey Tony--thanks for sharing what's going on with you. It's the support that gets us through the tough times. I really like what you said in your signature BTW--you sound like a cool guy. Anytime you feel like chatting hit me up on YIM

Rick

Oceanbeach · « **Reply #13 on:** January 06, 2007, 06:25:51 pm »

Hi Tony,

Welcome to the forums... Long Beach, 1995, Huh? We must have crossed paths somewhere. I hope you are getting your medical care at The CARE Clinic. They took really good care of me from 1994 to 2000, they are the best! Glad you joined us and... Have the best day
Michael

RobT · « **Reply #14 on:** January 07, 2007, 01:29:49 am »

Tony-
Welcome to the forums. Sorry to hear of ur experiences. I understand how big of a shock it must have been. Fortunately I have not been cursed w/ a KS diagnosis like u have, but I am glad to hear that the meds r working. Like another person who has posted a reply to ur original posting...u have 2 b patient. I know that is not what a lot of ppl want to hear, but it is something that must b done. Just keep on taking those meds and u will b fine.

RobT

poznlongbeach · « **Reply #15 on:** January 07, 2007, 06:27:11 pm »

Everyone-

WOW, thanks for all the kinds words. Talk about feeling the love in a room. I'm so glad I joined AM forums. It is so nice to hear from others like myself. Don't get me wrong I love the fact that my family and friends are praying for and supporting me during this difficult time but to have people around you that truly understand what you are going through really helps me get through the day.
You'll never know how much I appreciate all the you have said. It's hard some days to think that in time it will be alright. That things will get better.
I might be alone in my life ( no partner ) I buried him October 06 2005 but I no longer feel lonely.

Tony

Nadine · « **Reply #16 on:** January 07, 2007, 06:45:09 pm »

Welcome Tony, it's very nice to meet you!
Thanks for sharing so much of yourself with us.

Glad to hear the meds are working for you! Very, very good news!

Jeff64 · « **Reply #17 on:** January 07, 2007, 07:56:09 pm »

Welcome to the forum!

Jeff in Santa Ana

Jeffreyj · « **Reply #18 on:** January 08, 2007, 02:10:08 am »

Tony,
Sorry to hear of your latest KS problems. But All is not lost. I had KS in 1995. I had one in my small intestine, and several in my arm. I went to The Newport Cancer Center in Newport Beach. I started Chemo immediately. I lost more weight and lost my hair. After weekly treatments for 3 months. After 2 moths my arm cleared up and the one in my small intestine disappeared.
I was cancer free! So all is not lost, not by a long shot. Try to keep a positive attitude and surround yourself with loving friends and family.
I wish you a speedy recovery. Don't get down, it can be done!
Keep us posted!
Jeff

Eldon · « **Reply #19 on:** January 08, 2007, 02:16:01 am »

Hi Tony, my name is Eldon and I am also HIV positive. You are not alone with this unfortunate circumstance that has taken place in your life.

Here you will find acceptance, understanding, communication, support, some cries, some laughter and much more. This site is infused with a lot of good information in order to HELP you with any questions that you may have on HIV/AIDS.

From my personal experience here, this is a great group of individuals who will listen as we as answer back to you. I have learned so much more by being here with my interaction with the others.

A few suggestions to HELP you on your Journey:

1. A Positive Mental Attitude
2. A Good Exercise Routine
3. A Good Balanced Diet
4. A Good Strong Support System

Feel free to browse through the many variations of topics here and also share with what is on your mind.

Welcome to our community.

Forums Index

Welcome

Author Topic: New Member to am forums (Read 4753 times)