Any positive cancer survivors out there?

[lmdo]

Hi all,

Just needed some reassurance that HIV + people can conquer cancer and live many years thereafter.

My partner has just been through cancer treatment for throat cancer (HPV16 origin) and doctors are offering a high success rate.

I have this nagging fear that it's not that simple - virus caused cancer comes about through deficiencies in the immune system - his CD4 count was over 500 when he got the cancer diagnosis but has been pos for 10 years.

My fears are of recurrence / spread of this cancer and of new cancers. And then of cancer that I might develop as I am also pos and must have this strain of HPV as well. It seems keeping CD4 counts above 500 does not prevent cancer from occurring - there are higher rates of quite a few cancers (mainly virus caused cancers) in positive people with high CD4 counts, not just under 200.

It would reassure me to hear from people who have beaten cancer and are getting on with their lives and the cancer is all gone!

I don't think I can deal with bad stories I'm afraid though; i.e. "I have a close friend who died of this cancer a few years ago..." Can I ask for only good stories?!

[GSOgymrat]

I'm sorry you and your partner are having to deal with his cancer.

My partner was diagnosed with non-Hodgkins lymphoma in 1996. He completed chemotherapy and was fine. Then in 2006 he was diagnosed with a different cancer, Hodgkins lymphoma. He completed chemotherapy and once again is fine.  The HIV didn't appear to affect his recovery and his prognosis is good.

[Granny60]

husband; prostate cancer 19 months ago.

[Miss Philicia]

I have one friend who was treated for non-Hodgkins lymphoma in 2006 that is doing fine.  He was ~43 and had neglected to have an HIV tests for a long time so by the time he did his cd4 level was really low AFAIK.

I have another friend that had anal cancer about 3 years ago that is doing fine.  He's been diagnosed for a couple of decades with HIV.

Then again, I had another close friend die within 18 moths from pancreatic cancer 5 years ago -- He was 37, straight, and HIV negative (I had to put that in the mix for some perspective).  I'd known him since college.

[Grinch]

Burkitts Lymphoma, single digit CD4, 500,000 VL, Hep B, Hep C, all diagnosed at the same time in '04.
Currently healthier than I've been in 20+ years. VL<50, CD4 bouncing from 450 - 650, hep cleared.
It's possible to survive.  Hang in there.

[lmdo]

Thanks GSO, Granny, Grinch, and Miss P, I need to hear those stories.

I fully understand when your CD4 count is very low that OI's can occur and cancers can develop, and for those cancers it is very important to improve your CD4 count with meds.

On the other hand, young people do get HPV cancers anyway, and he may have got it even were he HIV neg.

The future just seems so dangerous - I hope that researchers / scientists / politicians / heads of pharma's don't think that we have beaten this disease. When I hear that positive people can expect a normal life span if they can maintain CD4's above 500 I am soooo skeptical - that is if you can avoid dying of :
cancer, heart disease, and other problems.

I know this is a pessimistic post, but it is how i feel at the moment. I know there are no certainties in life, and people always tell you - you might get hit by a bus next week etc. etc. but.... that doesn't make me feel better

HPV cancers are becoming more and more common - but again that is not just in the positive population.

Grinch - well done - that is certainly an achievement. And GSO your partner has been through a lot.

There is definitely a future for my partner.

I think getting these cancers diagnosed early and good medical intervention are the keys. But, how easy is it to become paranoid??!! When your lymph nodes go up and down, you lose weight at stressful times, you get lumps....

Thanks again guys and girls.
Life is for living.
 

[Tim Horn]

lmdo:

I was treated for non-Hodgkin's lymphoma back in 1997-1998. I did six full-dose cycles of chemotherapy, along with intrathecal ARA-C (chemo infused directly into my spine) every week for four weeks toward the end of my treatment. Approximately 12 years later, I'm doing a-okay -- no recurrence, despite the fact that the odds were not in my favor.

Feel free to be in touch if I -- or anyone here -- can be of any assistance.

Kind regards and all my best to your partner,

Tim

[lmdo]

Thanks for that Tim, another inspirational story.

And between then and now, HIV treatment has definitely made huge steps forward.

For cancer survivors (and from my point of view their partners) life is never the same again.

I think cancer must be one of the biggest fears of anyone - pos or neg. Some cancers are easier to treat than others and in some ways if some of them had a name other than "the big C" there might be less fear and more optimism. From what I have experienced speaking with oncologists in the field and reading on the net, HPV cancers do tend to repond better than non-HPV cancers in the head and neck / throat. Depending on the grade of cancer of course; i.e. spread.

Can we just buy some more CD4 cells on ebay or something to help keep these cancers away??!!

And for someone like yourself Tim, becoming an advocate and doing something that makes a difference is really embracing life and making the most of that second chance.

[lmdo]

I suppose what has shocked me is that although HIV is becoming more of a chronic manageable condition, there are certainly life-threatening problems that we may be faced with in our young years. My partner is 37.

Then again, I have a friend having bowel surgery today for pre-cancer who is neg, so you never know...

[tednlou2]

I wish you and your partner all the best dealing with this.  There have been about 4 people on my Mom's side who've had colon or rectal cancer.  It has made me think with HIV I should probably get screened before the age 50 guideline. 

It just doesn't seem fair to have to deal with HIV and cancer.  Good thoughts coming your way! 

[neojeepguy]

Hey,

I'm a HIV + cancer survivor having survived HPV related anal cancer two years ago. I've been through multiple checkups since & am 100% cancer free.

While the treatment wasn't fun and one month after I said I wouldn't do it again, I have since changed my mind and would get treatment in a blink. While I know that treatment for head & neck cancers can be some of the most brutal but with love & support I feel there is a real good chance of getting on with life.

Best of luck to you & your partner!

[Assurbanipal]

Look at the widget to the left of the screen and you may see a new study (unless it has updated already): 


"Liver Cancer Survival Similar in HIV-Positive and HIV-Negative People"



http://www.aidsmeds.com/rssredir/articles/hiv_hepatitis_cancer_1667_19331

[Jeffreyj]

I've had cancer twice.

In 1995 I had KS in my small intestine. 3 months of chemo and it was gone.

Then in 2009, I had a malignant skin cancer. They removed half of my finger.

Positive for 25 years now. We are allowed to get cancer and survive like anyone else!

[lmdo]

Thanks tednlou.
neojeepguy - i assume your anal cancer was hpv caused - have your cd4 cells come up since then?
would be great if we could get some sort of treatment for hpv to prevent these cancers
Jeffry J well done, yes it does appear that pos people can survive and beat cancer just like neg people.

Thank God (or whatever deity you believe or don't believe in..)
 

[Theyer]

Hello Imdo,

Hodgkins Lymphoma 2007-2008  and  1996-1997

Cannot say that tolerating the treatment was easy ,but I would do it again and again.

I do have problems that are unlikely to go away from the chemo, but I am more that happy to be still here.

Happy to let you know what the problems are but am bearing in mind your posts guidelines.

take care
t

[lmdo]

Mmmm,
maybe I should have said are there any pos people who don't get cancer...

no, stop that, be optimistic.

I know theyer - if you are faced with the treatment or death, I know what I would choose!

[LES Jake]

Known to be poz since September 1983.

Late 1993 was diagnosed with malignant melanoma. Thank God they caught it in time. I get checked every 6 months. Recurred once a couple of years ago.

I am Irish so I know I'm lucky.

Cheers

[lmdo]

Hi les,

that is great news that you have conquered cancer.

it seems the best chance of success is getting diagnosed early!

[edde]

I was born in July 1969 and I was diagnosed w/hiv in July 1999.  In July of 2010 I was half way through w/30 radiation treatments and 192 hours of chemotherapy for stage 3 anal cancer.  The cancer treatment was completed 8/10/2010 which is my other birthday now.  I'm still in the recovery stage.  I am proof that people with hiv can beat cancer too!  I wish you the best! And tell your boyfriend I said quitting is not an option and I'm praying for his speedy recovery.

[lmdo]

hi Edde,

You definitely have the right attitude. I can't imagine how difficult the treatment must have been. My partner had radiotherapy, not chemo. But it was an awkward are - the larnyx, so eating drinking and speaking were tough.

Was there any way that the cancer might have been caught earlier? Were there any symptoms? Just so that we might be on the look out for anything. I know there is a lot of discussion on the forum here about anal smear tests, anoscopy, etc. But were there any signs that looking back now you might have noticed?

I am pleased that you have gotten through the worst and can move on and appreciate life. It does shock the system and make you take stock of everything.

All the best!

[Danny47]

Hi Edde:

I suffered from UC for over 7 years.  I became HIV poz during one of my inmunosuppresant treatmens for my Ulcerative Colitis, I was on prdenisone for over 6 months, while my viral load was increasing by the second.  When I tested positive, my cd4 was on 120 and I was still on a flare for my inmuno excessive UC.  3 months after I started with Atripla I was diagnosed with Hodgkins (non traditional for HIV poz people) and started a course of chemotherapy to treat it.  My treatment finished and although it did a number on  my bone marrow, I survived the treatment and my ID Doctor (much to my surprise) was more concern about my VL being UD than my actual CD count.  In January of this I was diagnosed with Colon Rectal cancer Stage 3 and it had metastised to my lymphatic system.  Once again Chemotherapy and radio therapy for both my lymph nodes and my colon.  I finished my whole battle with cancer in August of 2010.  I get tested for my cancer every month, and after my  I was scheduled for a comprehensive test to make certain that no metastisided ocurred. The test came back clean and cancer free, they did some other tests now in November and once again, cancer FREE.  During my cancer treatment, once again my CD4 count was always between 200-316, and although I am extremely concerned with these numbers, My ID Dr. seemed pleased because my VL continued undetected.  I feel great today, my Doctors were greatly surprised that I started to work full time at the beginning of September, barely a month after I finished my cancer treatment.

I feel very strong today.  I am a real proof that yes, cancer can be treated and you can recover one hundred percent.  I can also let you know that I met 4 other cancer survivors who were also HIV positive.  Today with HAART treatment while going through chemotherapy you can beat the odds.  to me the key is to have a lot of follow up just to ensure that whatever we develop can be detected early, early detection for cancer is the key and being HIV does not complicate matters as long as you follow your treatment during the process.

My best to you and your partner, see a long healthy life ahead of you guys.  I will keep you in my prayers and visualize a full recovery....     

[Danny47]

SORRY EDDE! The above message was directed at IMDO, but I do wish you well too!

[lmdo]

Hi Danny,
Compared to what you have been through I think my partner has been lucky - he certainly counts himself lucky. What a bitch getting that triple whammy - on top of UC, becoming poz, then lymphoma and colorectal cancer.

My thoughts and prayers are likewise with you, and all the other guys here who have beaten cancer - it does make u realize how fragile life is.

There is never a good time for cancer / HIV - diagnosis and treatment - it's all a pain in the ass...
 
You are right Danny - it is all about diagnosing early and getting treatment ASAP

[Danny47]

In my case a REAL PAIN IN THE ASS!!!  Hahaha...ImDo, that was too good to pass! I slept for almost three month avoiding anything touching my butt from the radiation, tell you not a pretty tan line...

Keep your good spirits.  To me live is 10% what happens to you and 90% what you make of it...

[lmdo]

In my case a REAL PAIN IN THE ASS!!!  Hahaha...ImDo, that was too good to pass! I slept for almost three month avoiding anything touching my butt from the radiation, tell you not a pretty tan line...

Keep your good spirits.  To me live is 10% what happens to you and 90% what you make of it...

Haha - I know! Ouch.

I am trying to improve my outlook - after my partner's cancer diagnosis it really threw my world into a spin - it is very easy to fear a lot of things, and cancer is probably the biggest one - being poz makes it a real possibility. But then again life is not worth living if you are in fear and worrying all the time.

Thanks for your story and your inspiring attitude.

[Danny47]

Tell you what.  This maybe will get some wild comments out there, but here it goes.  I loved my cancer.  I love my HIV.  And yes, sometimes before I pop my Atripla every night, i think "what a bitch" Also when I was diagnosed I found myself telling total starngers but yet to this day have not been able to tell my own Mother.  Maybe because she hated the person that gave it to me.  Maybe because i don't feel like defending him.  He told me he was negative.  I CHOSE to believe him.  I survived the 80's. And although I am still considered a newbie, I had too many friends (lost count) that passed away due to this thing that I carry in me now.

So I chose to live my days fully and maybe I am blinded by what might come my way, but I barely actually never, think about that.  I have always been a humble man, maybe more so than the majority out there. But the humbleness that HIV has given me goes beyond any spiritual lesson that can experience in this and the next 7 lives that I was bound to live.  And I went to public clinics to get treatment And met real heroes  many of them volunteering their time and efforts to help me out.  Those sitting next to me, many of them homeless, many of them with a lot less opportunities than I had, all of a sudden were my equals, and I felt humble and yet lucky for the opportunities that I had. 

I met young people, which I feel are unnaware of what we experience in the 80's when your friends were dying and no one wanted to hug them or kiss them for the fear of contracting IT. And yet now I HAVE IT, but yet someone like you IMDO stays by my side and hugs me and kisses me and worries if anything happens to me. So I have nothing left but to feel very fortunate.

So I had cancer twice and so does your partner.  But the bond that you two are developing right now will mark your lifes far deeper than his temporary condition will.  Because he will look back and remember that when he opened his eyes after being ill driven by his treatment, YOU were there.  And so was my Sister who's own tears made me realize that I had to be strong for her because she also knows about my HIV status but my Mom doesn't. And that's why I LOVED MY CANCER. Because it makes you strong, I am stronger than I've been in my life! And instead of making you vulnerable it really gets you and him  for a whole new life.  A life without fear, of complete enjoyement, a life of appreciating even the passing of a butterfly and seeing a spiritual meaning behind it. 

Be strong.  "This too shall pass" was my daily motto.  Use it, I lend it to you and him, Do not let fear take over you nor him.  I hear your story and I feel lucky, and YOU said that you were the lucky ones! You see. what a beatiful travel you are ready to embark?  Embrace it.  I saw so many people in pain but with each new one I felt lucky to have people like you by my side making me larger than I am.  My biggest fear was never dying (and believe me I LOVE LIFE) it was not being strong for those near me like my family and my partner.  But because I experienec so much love.  My friends opened prayer groups on facebook, my space, every church...and total strangers would send me stuff, mail me gifts, they took from their time to post their prayers! So my cancer made me love humanity more and it showed me that there's so much more love than we fail to see and recognized out there.

Be well.  I really have you and your partner in my prayers and I him healthy and you by his side.  What else can he hope for?

Be well.
   

[lmdo]

Thanks for your honesty Danny.

Your outlook and approach to HIV and cancer is similar to my partner's. I was infected whilst having safe sex, but actually did not become infected 9 years ago when having unsafe sex with someone who at the time was pos. So I was given a second chance - instead of being upset about myself for getting infected and not taking PEP, I should really be thankful that there is treatment available that is quite successful. There are no alternatives at the moment so you have to deal with it. My partner sees his cancer as being something fortunate as it is one where the success rate seems to be quite high. He also sees HIV as being something that has been beneficial to his life, similar to yourself.  It seems that presented with the same situation, you can either confront it with a positive mindset or else stress and worry and that is more harmful.

I fear cancer  both for me and my partner - his was HPV caused - but living your life in fear is no way to live.

I pray every day for a cure for HIV and maybe one day this will eventuate. In the meantime, hearing from people like yourself, and my partner, all you can do is embrace life and everything it throws at you.

I am definitely at the crossroads, and have come farther than I thought I could - I was in a very deep hole that I thought I might never come out of. Part of that was medication induced, but the other part might be my natural worrying nature. I have moved ahead into the next phase of my life with my partner. Thank you for being so honest and inspirational - you are right - there are so many people suffering out there. While my partner and I have my health I must be grateful.

X

[Danny47]

One advice to him is to keep taking lots of supplements and I still take three Ensure per day.  I also took a product from 4Life that did wonders for me.  It tasted like shit but It went down rather easy with some juice, it is called ReZoom.  I buy it through the internet.  A person that was doing chemo told me about it, and I always kept my hemoglobin pretty high, always above 11.  Tell him not to put up with the side effects (nausea, diziness, diareah, weird taste in mouth) if he gets nauseated, take the phenergan.  If he has diareah, inmodium by the dozens, weakness,? crackers, bananas and some juice.  I found that the pear juice one, didn't give me a funny metal taste. and I lived by apple sauce.  Now I can't stand them!  and lots and lot and lots of water, even when he doesn' feel like it...force him to take it.

I shaved my head (before it fell off). some family members and friends, shaved their head at the same time.  Now its growing a lot more than before and thicker...Also pretty salt and Pepper, which I like.  I slept a lot anf read a lot.  Resting was soooo cool.  It kept me in a different world, and believe me it will go by so fast!

Remember, this too shall pass.  Plan a nice trip months after the scheduled finish time. I though ithat if I finished in August I could cruise the world in September and it is NOT like that.  So don't get discouraged, it is normal.  and if he goes thru radiation too, have the doctor prescribed the burned mediation from day one.  The burns will take like 3 weeks to start showing up, and when they do, they really do.  This too is normal.  I also used the Aloe Vera leaf from the refrigerator and use the pulp to rub it on my skin. It was awesome, but it smells like a carpenters armpit on a hot summer day, pretty stuff if you imagined him being tall, dark, and handsome.  But thismone one short, skinny and ugly!   

Try and keep people informed. I became speechless during my treatment. I became a bit of a hermit....talk to people for him and pamper the hell out of him (dom't let him read this or he might get spoiled) he needs rest and lots of quiet times.

Be well, keep us posted from time to time, you guys will continue on my good thoughts and prayers.

Danny