Author Topic: New Here! Poz w/ HIV related Hodgkins Lymphoma (Read 10065 times)

ANGEL42 · « **on:** May 23, 2008, 06:22:41 pm »

Hi Everyone!
Angel here from Long Island, New York. Poz for 11 years in July and in remission with recurrent HIV related Hodgkins Lymphoma. Doing good and I`m glad to say I`m undectable and have stayed that way all throughout Chemo and radiation treatment with HD. I`m 44, 5'9" 165lbs. slim and look pretty good for someone who has gone through so much.
Was very excited to find this forum and just wanted to say Hi and hope to make some new friends in the process.Still learning my way around here so bear with me if I seem a little out of soughts.
I`m a laid back kinda guy who loves to keep positive even in the worst of times.I`m compassionate, kind and funny.Been off the radar for awhile and I`m looking to make some new friends.Life is Good.
Well thats about all for now....feel free to say Hi and howdy and Ask me any questions you`d like.

ANGEL

aztecan · « **Reply #1 on:** May 23, 2008, 07:08:59 pm »

Howdy Angel,

Welcome aboard! You're attitude is both remarkable and refreshing and I'm glad you have found us.

I'll check in later, but wanted to say hi.

HUGS,

Mark

rondrond · « **Reply #2 on:** May 23, 2008, 07:18:18 pm »

Hi and Howdy Angel. Glad your here.
ronnie

MOONLIGHT1114 · « **Reply #3 on:** May 23, 2008, 08:17:31 pm »

Welcome, Angel, its refreshing to read that your spirits are up. You've found a good place here.

~ Cindy in Maryland

ANGEL42 · « **Reply #4 on:** May 23, 2008, 08:57:52 pm »

Thanks Mark, Ronnie, and Cindy!
Its starting to feel like home allready LOL. I`m also a member on LLS Leukemia and Lymphoma Society Boards for over a year now and have found great comfort in talking with others who share a common thread of exsistence, that being illness.
I too Ronnie, after being Poz since 97` put HIV on the back burner only to have it rear its ugly head with Cancer.Such a smart little devil our virus is.But now I`m ready to face them both, hiv and cancer...It is what is...so they say.
It`s funny, I spend so much time in dealing with doctors and treatment for this thing and another it makes me aware how strong I can be.As long as I`m undectable and I`m in remmission with the cancer I can handle all the rest of the stuff....
Just wanted to say thanks for the Welcoming!

ANGEL

P.S. Ronnie , on Coumidan too, not fun at all...for a blood clot caused by my Port a Catheter It

GSOgymrat · « **Reply #5 on:** May 23, 2008, 11:21:54 pm »

Hi Angel and welcome to the forums. My partner completed chemotherapy for Hodgkins Lymphoma last month. He had multiple tumors including a couple in his lungs but he is cancer free. He also had a blood clot due to a port a catheter but that was 10 years ago when he had Non-Hodgkin's lymphoma. How long have you had Hodgkin's?

ANGEL42 · « **Reply #6 on:** May 24, 2008, 06:46:16 am »

Good Morning!
Was Diagnosised March 3, 2006. Unfortunately relapsed after only 7 months my first time around but now after GND salvage and Rads I`m 9 months remmission, YEAH! My Doctors at Sloane NYC wanted me to do a SCT after I relapsed but choose to do GND and Rads only. My gut told me not to do a transplant because I felt it was going to be to hard on me and I believe my "Angels" were with me in making that decision. I`m glad I didn`t do it.I had to take the HIV into factor with not going through it.
I`m looking forward quality not quantity of life...We all going to pass on, I just want make my last days on earth as enjoyable as possible. A Transplant takes it toll on your body and the recovery is hell.I was given a 50% chance of cure with transplnat and 25% with just salvage and rads.No reason I can`t be the 25%.....I consider myself a miracle. My faith in God, family and friends has given me the strength to fight for life. My Personal Mantra has always been" My Body might be broken, but my Spirit and Soul is alive and well"

Peace and Love,
ANGEL

J.R.E. · « **Reply #7 on:** May 24, 2008, 09:13:33 am »

Hello Angel,

Also wanted to say hello, and welcome you. Thanks for the intro, and for sharing a part of your life with us !! Be looking forward to hearing more from you...

All the Best----Ray

Peter Staley · « **Reply #8 on:** May 24, 2008, 05:01:24 pm »

Welcome to the site, Angel. Glad you found us!

Peter Staley
Founder
AIDSmeds.com

ANGEL42 · « **Reply #9 on:** May 24, 2008, 05:37:03 pm »

Thank You Ray and Peter...such a nice welcoming here...much appreciated. Looking forward to making new friends and sharing my journey with HIV related recurrent Hodgkins Lymphoma. Hoping to meet others who have gone through some of the similiar expieriences as mine. I think it`s important that others know the risks and the importance of early detection for HD in HIV people. I unfortunately wasn`t diagnosised until I was allready in Stage IVb. The possitive news is that you can get through it and become a survivor with both HIV and Cancer.

Peace and Love
ANGEL

xyahka · « **Reply #10 on:** May 25, 2008, 12:17:18 pm »

Hi Angel, so nice to have you here. Welcome to the boards!!

Juan Carlos

rondrond · « **Reply #11 on:** May 25, 2008, 12:35:59 pm »

Quote from: ANGEL42 on May 23, 2008, 08:57:52 pm

Thanks Mark, Ronnie, and Cindy!
Its starting to feel like home allready LOL. I`m also a member on LLS Leukemia and Lymphoma Society Boards for over a year now and have found great comfort in talking with others who share a common thread of exsistence, that being illness.
I too Ronnie, after being Poz since 97` put HIV on the back burner only to have it rear its ugly head with Cancer.Such a smart little devil our virus is.But now I`m ready to face them both, hiv and cancer...It is what is...so they say.
It`s funny, I spend so much time in dealing with doctors and treatment for this thing and another it makes me aware how strong I can be.As long as I`m undectable and I`m in remmission with the cancer I can handle all the rest of the stuff....
Just wanted to say thanks for the Welcoming!

ANGEL
P.S. Ronnie , on Coumidan too, not fun at all...for a blood clot caused by my Port a Catheter It

Hi Angel, yeah they say the tough get going when the going gets tough....I've been discovering that even though I had things on the back burner..they were still simmering...and one thing leads to another...if not for my DVT, I would never had the 'time' or inclination to even give HIV the time of day. It was when at a routine lab drw that it was casually brought into the conversation that DVT and blood disorders could be an OI brought on by untreated HIV....0.0...I made an appointment with AOC and then everything simmering on the back burner , started to boil over...
well,, have a good one
ronnie

ANGEL42 · « **Reply #12 on:** May 26, 2008, 10:53:47 am »

[b]Hi Ronnie, call me silly but what is AOC....can`t figure that one out.
Have a wonderful Memorial day.
ANGEL [/b]

rondrond · « **Reply #13 on:** May 26, 2008, 10:16:57 pm »

Quote from: ANGEL42 on May 26, 2008, 10:53:47 am

[b]Hi Ronnie, call me silly but what is AOC....can`t figure that one out.
Have a wonderful Memorial day.
ANGEL [/b]

Nothing silly about it at all. I spend just about as much time googling as I do reading

Here in Fort Worth, AOC = Aids Outreach Center...

BT65 · « **Reply #14 on:** May 27, 2008, 08:11:24 am »

Hi Angel, sorry my welcome is late. Just wanted to say "hi" and hope to hear more.

ANGEL42 · « **Reply #15 on:** May 27, 2008, 03:35:42 pm »

Thanks for the welcome Betty....
Hope everyone had a great Memeorial day weekend..mine was quiet and spent time in the garden. been the first time in two years I`ve been able to play in the dirt. The last two summers I was doing chemo and/or rads so playing outside was not a good idea. I felt like a vampire because I couldn`t do the Sun.
Was supposed to go for my last sleep Study tonite but had to cancel because my ONC. tweaked my coumidan which has me feeling like Poopy. Oh yeah, I also have sleep apnea now due to scaring on my throat from rads and a swollen tongue. Fun Fun Fun. Also have lung issues so now I have asthma and allergies. Lung Dr. just raised my Advair to 500/100 and prescribed a rescue inhaler. Also going for blood work for possible AGI ( Lung Allergy)
Seeing PCP tommorrow for Cholesteral check and to load up on referrals. BC/BS HMO so thats always fun. But thank G-D for insurance and NYS ADAP who pays for it for me. Bless them. Couldn`t imagine not having insurance.
What else...Hmmmm I think I`m pretty free till next week and shrink appt. LOL Busy Busy Busy.... But theirs always gratitude.

Peace and Love,
ANGEL

duby60 · « **Reply #16 on:** May 28, 2008, 10:00:29 am »

You know what Angel take heart and be strong.Have a positive mind too.We are many and we gonna live long .Hugs.!!!!

ANGEL42 · « **Reply #17 on:** May 29, 2008, 10:22:38 am »

Hi Gang!
Decided to take my pic off because I started getting paranoid.I noticed that alot of people have read my thread but only a small amount of replies. Who are these people lurking in the background? Hmmmmmm....one never knows does one. I`ll stick with my Angel pic for now.If anyone is interested in seeing a pic of me than just private me and I`ll share for sure. I know it seems silly to be paranoid but it makes me a little uncomfortable.

Have a Great Day!
ANGEL

dbport · « **Reply #18 on:** May 30, 2008, 11:37:47 am »

I'm relatively new to these boards, but felt especially drawn to responding to your posts. I too have been diagnosed with AIDS since 1989 and had Hodgkin's Lymphoma (Stage IV-B) in 1999 and a recurrence in 2003. I also had anal cancer in 2006, due to HPV virus. It's comforting to hear your stories and know that like others, I seemed to respond well to (ABVD) chemo and radiation therapy. The side-effects from the radiation were difficult, which I see with others too. (I ended up losing my teeth, due to the radiation destroying my saliva glands.) While one of the side-effects of having HD, makes you more prone to other cancers in the future, I have a very positive outlook and a great support network and believe that it makes a huge difference in my life and health. Like everyone else, I have my good and bad days, and like a previous poster, I have really enjoyed getting back out to work in the garden, after having several years of not being able to do so. My most recent "bump in the road" was having pneumonia, and having to spend 17 days in the hospital, after it became bacterial and got into my blood stream. Despite all these things, I still feel blessed to be able to have come through them and still able to maintain a positive outlook and a willingness to share my experiences with others. I'm so amazed to find this particular message board, and look forward to being a regular here. By helping others get through their adversities, always seems to give my spirit a boost too. I look forward to meeting so many of you who have gone through such similar issues as I have. Thanks for your willingness to share so openly.

Peter Staley · « **Reply #19 on:** May 30, 2008, 12:12:09 pm »

Welcome, dbport. Glad you found us!

Peter Staley
Founder
AIDSmeds.com

rondrond · « **Reply #20 on:** May 30, 2008, 12:43:54 pm »

Howdy dbport.
Welcome to the forums.
ronnie

ANGEL42 · « **Reply #21 on:** May 30, 2008, 03:09:32 pm »

Hi Dbport,
So Good to meet you! Your the first person I`ve met in over two years that has had HIV realted HL. I`ve been looking forward to meeting someone like yourself.You seem to know exactly what its like to go through cancer and the fact of relapsing.( Never mind the fact of dealing with bering Poz) You have a good positive attitude like myself which is so great to hear. I`m glad we found each other. I hope to keep in through this forum.... When you relapsed did you do salvage and rads? SCT? curious...
Talk to you soon!
ANGEL

dbport · « **Reply #22 on:** May 30, 2008, 07:17:14 pm »

Thanks for all the warm welcomes! I truly believe that knowing others who have or had Hodgkin's Lymphoma beyond being poz, can only benefit and help support us. After being diagnosed with my recurrence of HL, I used WEB MD's Hodgkin's Lymphoma message boards, and was able to help several people who were recently diagnosed, by sharing my experiences and being able to empathize and offer support to both them. It was very rewarding to have something so nasty as HL, and yet be able to do something positive despite it.

Being a "newbie," I'm not sure how to send/receive private messages, but I wanted to thank Angel42 for his response to my post. I'm glad to have found others who really know what I've gone/am going through too. I look forward to hearing more about your particular situation and sharing more about mine too. You asked me a question in your post, which I don't understand...salvage and rads, SCT. Perhaps, it's a good thing I don't know what they mean; hopefully I haven't had them!!! Anyway, I am very fortunate to find this forum and get to know other positive, POZ & HL survivors.

ANGEL42 · « **Reply #23 on:** June 12, 2008, 11:17:46 am »

Hi Everyone,
Just wanted to stop by and say Hi and howdy. Been busy lately and have been having some issues with my blood clot . My Onc. has been tweaking my coumidan alot because my numbers have been low and blood to thin. Everytime he tweaks my meds I get sick until my body gets used to the new regamin. Hopefully by next week I`ll be theraputic again.

On a happier note I`ve reconnect with an old flame and we plan on seeing each other Sat. nite. Very excited. Real nice guy. I broke up with him when I found out I had HL so as not to have to put him through the whole treatment thing. He wanted to be part of it, but stubborn me wanted to do it alone.Now that I`m 10 months in remmission its time to get my feet wet again. Yeah

The weather here in New York finally has cooled down and its gorgous today with clear skies, 80 degrees and dry. My kinda weather.

Going to finally finish up with the sleep apnea study tonite with the CPAP placement...can`t wait to finish that.

Other than that, alls well, lifes good.

TTYL
ANGEL

dbport · « **Reply #24 on:** June 12, 2008, 06:22:33 pm »

Hi everyone,

I'm having my semiannual Hodgkin's Lymphoma tests, starting with today's blood work. Tomorrow, I go in to have a full body CT-Scan and a Gallium Injection. On Monday, I go back and have a Gallium Scan that picks-up the nuclear medicine from the injection, which adheres to fast growing cells within the body. (Hodgkin's has fast growing cells.) The newer PET scan is more common now, than the Gallium Scan, but since I've been using the Gallium since my 1st bout with Hodgkin's, we decided to continue using it for now. I'm curious about the result of the CT-scan of my chest, since it's the first I've had, since my pneumonia in January. (if it's not one thing; it's another!!! LOL!) Just wanted to keep you posted, and will let you know how everything turns out, after I see my oncologist on 6/20/2008. This will be the 5-year mark, since being in remission, after my only recurrence in 2003! I have no reason to think that my reports will be anything but wonderful! I also think that after 5 years in remission, I only have to be tested for recurrent Hodgkin's every year, instead of every 6 months! Which is GREAT!

ANGEL42 · « **Reply #25 on:** June 26, 2008, 08:26:48 pm »

Doing Fabulous everyone and I`m excited to say I`m meetinmg this poz guy I met on MH of all places tommorrow night. He`s 28 and 2 years poz to my 11 years. We`ve been chatting for a couple of weeks now and have been having a great time. Nervous to finally meet but I am going to take it slow and enjoy the moment. I`m starting to see a light at the end of my tunnel with life after cancer so this should be a good expirience for me.

Wish Me Luck
ANGEL

BT65 · « **Reply #26 on:** June 26, 2008, 11:00:30 pm »

Good luck, Angel. I hope everything works out (of course, I will want details).

ANGEL42 · « **Reply #27 on:** July 01, 2008, 09:53:08 am »

Hi Betty!
It is going fabulous...He`s such a sweetie and real cute. I`m so happy to have someone to care about other than myself LOL. The age difference doesn`t to seem to be a problem.I think I shared he`s 29. I always knew eventually the tides would turn and instead of looking for an older man I would become the older man. LOL

On another Happy note, July 6th I celebrate my 1 year remmission with HIV realted recurrent Hodgkins Lymphoma and I`m so happy. I`m a miracle! I`m blessed! and I`m so grateful!

I know the monster could always return but for now I will continue to stay positive, faith based and grateful for the life I have. Its all good.

TTYL
ANGEL

rondrond · « **Reply #28 on:** July 01, 2008, 11:39:39 am »

Angel,
Glad to hear everything is working out.

dbport · « **Reply #29 on:** July 01, 2008, 06:08:12 pm »

Hey Angel!

So glad to hear about your 1 year "remission" anniversary from Hodgkin's Lymphoma! WAY TO GO! I totally agree with you, that keeping a positive outlook, having faith, and living each day to the max, is the best way to go! Congratulations on meeting someone too! I think it's a lot easier to have a positive outlook, when other areas of your life are going well too! I wish you all the best!

This year is my 5th anniversary of being in remission from recurrent Hodgkin's...and it's a great milestone to achieve. All my semi-annual tests came back fine, other than having to have an endoscopy, to remove a polyp or growth they found, which is nothing, compared to all the good news!

ANGEL42 · « **Reply #30 on:** July 02, 2008, 04:52:33 pm »

Congratulation Dport!
Thats fantastic! You are an inspiration to me and so glad to hear about your success HIV Hodgkins. 5 years is a Major Milestone...AbFab!
I hope all else is well with you and that you plan a big celebration on your 5 year mark.

All The Best!
ANGEL

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Author Topic: New Here! Poz w/ HIV related Hodgkins Lymphoma (Read 10065 times)