BC and HIV/AIDS

jenrio

Bump.   Maybe Etherize should consider start another thread in the clinical trial forums and be able to find other AIDS+BC folks?

http://community.breastcancer.org/forum/73/topic/788741

etherize

As far as I know, there aren't any clinical trials underway involving people with HIV and bc.  Up until recently, people with HIV were excluded from cancer trials altogether.

Numbly

Hi, I know it's a while since your post so I hope you're still on this forum.



I have joined your club, albeit the other way around. I was diagnosed with breast cancer in August 2012, managed to contract HIV from acupuncture (the guy was bloomin' recommended to me, that's the worst of it!!) a few weeks later, lumpectomy while sero converting and here I am, waiting to find out if/ how I can be treated.



If you're still online please get in touch. It's a lonely place right now.



Lisa

etherize

Hi Numbly,  I'm really sorry to hear you're in the club!  It's definitely scary (and lonely) having these two diseases at once.

Have you gotten your pathology report yet -- do you know what kind of bc you have (IDC, ILC, DCIS, etc.), hormone status, the stage, grade, lymph node status?  You had a sentinel node biopsy, right?  Often that's done along with the lumpectomy.  What kind of breast cancer you have makes a big difference, of course.  It's likely that you won't even have to do chemo, in which case everything is a lot simpler.

If you do have to do chemo, you're "lucky" in that you're newly infected with HIV, so you have a wide range of HIV meds to choose from to minimize interactions and side effects.  It was much more difficult for me because I've been on many different HIV meds, and the virus I have has developed resistance to many, including a whole class I'd never even taken (bad luck).  So it was complicated to find HIV meds I could take while doing chemo.  (Turns out I had basically one choice.)

In fact, if your T-cells are high (and I'm sure they are, since you're so newly infected), it's likely your doctor will recommend holding off on starting your HIV meds until your cancer treatment ends.  That's something to consider.  In my case, my doctor suggested I stop HIV treatment during chemo -- but my situation is much different, I've been infected for a LONG time, I'm 55, and it just made me too nervous to do that.  But a lot of HIV+ people who get cancer do.  Do you have an HIV specialist?

I don't know your age, either ... of course that plays into the decisions you'll be making.

It sucks that you got HIV from acupuncture.  And it must be really painful to think about being the victim of such a gross error.  But the important thing now is to look forward, and think of all the positive things you can do to maintain your health.  I think you'll come through this experience with flying colors.  For me, it was much less uncomfortable and traumatic than I expected it to be.

You will get through this, and be back to your old life much sooner than you can imagine.  Of course, these diseases change us, and that will always be there.  But you're going to be OK.

Feel free to ask any questions, or message me ... I'm happy to help in any way I can.  I just passed my 17-year anniversary of testing positive, and 30 years of being infected ...!

1Athena1

Hello everyone,

Sorry for intruding here. I have petitioned the moderators to separate the mixed typed of bc threads from the bc and other illnesses threads, since both situations are entirely different. If you agree, read here and post your opinion:

http://community.breastcancer.org/forum/93/topic/795779?page=1#idx_13

I am making a perfect nuisance out of myself by being so pushy, but I do feel it is important. Comorbidities create an entirely different bc experience for many of us - one we frequently cannot discuss with others who are not in our situation.

God knows, HIV/AIDS is certainly a game changer. So is my comorbidity. We even look atdeath differently.

etherize

Thank you, Athena!  I am glad you're making a nuisance out of yourself.  I posted in the other thread, and I hope the mods listen to us.

ljuliad

good god! what can I say? besides I want to curse a God that would bring this upon a person? For the both of you! I know, I know, saying "my prayers are with you" and things of that nature never really cheer me up (I'm stage 4 BC with mets in liver, lungs, brain and bones) but I'm truly at a loss here. You two are my heroes.

etherize

Awww, ljuliad, thank you for the kind words!  They are much appreciated.

You certainly have no shortages of challenges yourself!  I wish you many years of good health ahead.  Who knows what kind of progress they are going to be making in BC treatment.  When I was diagnosed with AIDS, it was an absolute death sentence.  I had a maximum of 8 years to live, if I was lucky.  A couple of months later, new drugs came out and here I am ... 17 years later.

So there is always hope!

steelrose

Hi etherize!

I was happy to see your recent post! The news in Dec. about treating cancer with a disabled form of the HIV virus kind of boggled my mind, but I've always suspected a link. We inch ever closer to finding the key that will unlock this entire mess... In the meantime, I hope that your treatments continue to keep you stable, and that you are able to enjoy life! Happy, Healthy New Year, and I continue to keep you in my thoughts...

xo

Rose.   

etherize

Thank you, Rose!  I hope you are doing well!

The use of disabled HIV to treat cancer is exciting -- it actually made the news over a year ago.  I'm not sure why it's in the news again ... maybe they've made more progress on it.  

Anyway, here's a link to an article from 2011:

http://www.nytimes.com/2011/09/13/health/13gene.html?pagewanted=all&_r=0

Happy, healthy New Year to you, too!