BC and HIV/AIDS

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etherize
etherize Member Posts: 423
edited June 2014 in Breast Cancer with Another Diagnosis or Comorbidity

I don't know if I'll find anybody else on this site who has bc and HIV/AIDS, but it's getting kind of lonely out here so I thought I'd start this topic (after checking with the moderators on where to put it).

I got my first scary diagnosis in 1995 when I found out that not only did I have HIV, but it had progressed to AIDS.  I definitely got PTSD from that!  Once you have AIDS (or HIV), you're kind of always expecting to get something else -- HIV+ folks are at high risk for many cancers, as well as other life-challenging illnesses.  So in some way it wasn't a huge surprise to get breast cancer -- at least, not like it is for many people here.  

There are specific problems to deal with in treating bc along with HIV, and the main one is how to maintain my immune system while undergoing chemotherapy.  Reading the tips in the chemotherapy forum was like a little trip down memory (or nightmare!) lane.  I guess that makes me a little bit "lucky," since I'm used to being vigilant about germs, diet, stress, etc., etc.  So at least it's not all new to me.

But it's scary -- and very weird, to say the least -- to think that after all these years of trying to get my immune system stronger, I'm now going to challenge it like never before, all in the hopes of defeating another life-threatening disease.

I hope others fighting HIV/AIDS (or other diseases) along with bc will join me here ... 

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  • Jelson
    Jelson Member Posts: 1,535
    edited September 2011

    Etherize-

    I hate to see posts with no response, so while I don't have HIV/AIDS and BC, I just wanted you to know that I am sending major hugs your way. It sounds like the good news is that people with HIV/AIDS are living longer, the bad news is that people with HIV/AIDS are at risk of the same diseases as everyone else. 

    Good luck

    Julile E

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  • etherize
    etherize Member Posts: 423
    edited September 2011

    Thank you, Julile E!

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  • Jelson
    Jelson Member Posts: 1,535
    edited September 2011

    Now I have someone/something else to worry about, YOU. Check your cantaloupes. It really pisses me off when the healthy food choices get contaminated.  

    http://www.huffingtonpost.com/2011/09/19/cantaloupe-deaths-colorado_n_970856.html

    Julei E

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  • etherize
    etherize Member Posts: 423
    edited September 2011

    Thanks for the article link; I didn't see that.

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  • apple
    apple Member Posts: 7,799
    edited September 2011

    i just want to wish you the best of luck as you traverse chemo. 

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  • etherize
    etherize Member Posts: 423
    edited September 2011

    Thank you, apple!  I am sitting here reading the Chemo thread, wondering what is in store for me. :)

    I only know one other person with HIV and cancer; I just recently met her briefly.  She had just one 1/2 strength chemo treatment and decided not to continue due to severe side effects.

    I know everybody's different, though.  I'm trying to keep an open mind. :) 

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  • steelrose
    steelrose Member Posts: 3,798
    edited September 2011

    Hi etherize...

    I recognized you from your other post in the male breast cancer forum. No one should ever feel lonely here! We probably have more combined "special circumstances,"medical and otherwise, than you could ever imagine! Just wanted to wish you great luck with the chemo, and few side effects. I realize that you face special immune system challenges with HIV/AIDS... these boards have so much information on diet, lifestyle, you name it. I've lately become very interested and aware of how STRESS effects me! So much to consider as we forge ahead. I send you love and wish you the very best!

    Love your picture too!Smile

    Rose.     

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  • etherize
    etherize Member Posts: 423
    edited September 2011

    Thank you so much, Rose!   I really appreciate the support I've gotten from everybody here. :)  It's easy to feel alone, but all of you have made a tough time a bit easier for me.

    I'm glad you like my photo!  That's my Peanut.  She and her brother Buddy are such good therapy. Talk about stress relievers! ;)

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  • thatsvanity
    thatsvanity Member Posts: 391
    edited September 2011

    It sounds like you have really managed your health well, I hope chemotherapy can be manageable and successful for you, I'm sure the med person that mixes the chemotherapy cocktail will know how to make it just right for you!

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  • etherize
    etherize Member Posts: 423
    edited September 2011

    Thanks, thatsvanity!  I don't think they have much experience with treating these two diseases together at the facility I'm going to, but I'm hopeful. :-)

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  • Octobergirl
    Octobergirl Member Posts: 334
    edited September 2011

    I'm pulling for you and hope you will be able to tolerate chemo despite the HIV. Is there any chance of going to a NIH or teaching center...or ask your oncologist to consult with one....to get the most current tx. info for your dual diagnosis?



    Let us know when you start chemo so we can send good thoughts, blessings and positive energy your way.

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  • etherize
    etherize Member Posts: 423
    edited September 2011

    Octobergrace, I can't go to another center but I'll ask my onc if she can consult with one.  Thanks for the suggestion!

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  • etherize
    etherize Member Posts: 423
    edited October 2011

    I know there's nobody here but me who has bc and HIV/AIDS, but some day there might be, so wanted to post a link.

    I FINALLY found some research on treating cancer in the context of HIV.  Not great news.  I knew it would be difficult, but the idea of actually stopping HAART (highly-active anti-retroviral therapy) while doing chemo is NOT appealing.  I really, really don't want to do that, due to risk of resistance, creating stronger virus, infections, death, etc.  

    I am hoping I can do the TC chemo regimen which looks like it would work with Kaletra, but when it comes to hormone therapy, I'll have to use an aromatase inhibitor, not Tamoxifen.

    Anyway, I'm talking to myself here ... so here's the link if anybody is interested:

    http://www.aidsbeacon.com/news/2011/06/07/haart-may-affect-chemotherapy-treatment-in-hiv-aids-positive-cancer-patients/

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  • steelrose
    steelrose Member Posts: 3,798
    edited October 2011

    etherize...

    I remember when I first heard about HIV/AIDS in the '80s and they classified it as "a new cancer." I have the feeling that once they find the cure for one, the other will soon follow. You are a unique voice on this forum, and although I don't have HIV/AIDS, I am certainly listening! I am on an aromatase inhibitor, Arimidex, which is holding me in remission at the present time. These AI's can be very effective for those of us that are ER+!! And if it works with your HIV/AIDS drug regimen, all the better. 

    Please keep posting, and remember that just because no one in your position has responded doesn't mean they aren't reading!

    xoxo

    Rose.

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  • bayareamom
    bayareamom Member Posts: 61
    edited October 2011

    etherize, best of luck to you.  We are all here for you!

    Jeanne

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  • ProudMom_Wife
    ProudMom_Wife Member Posts: 634
    edited October 2011
    etherize - Thank you for sharing your situation.  Just saw this thread.   Although I am not in the same situation as you I wanted to let you know this is a safe place to post and I am here for you also!
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  • ToriGirl
    ToriGirl Member Posts: 1,188
    edited October 2011

    etherize---just wanted to reiterate to you....we are here for you...cheering you on!

    God bless!

    Tori 

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  • etherize
    etherize Member Posts: 423
    edited October 2011

    Thank you everybody for the wonderful support!!  

    Rose, I'm glad the Arimidex is working well for you!  I hope you have years of remission ahead of you.   Were you already postmenopausal when you started it?

    I can't tell you how many times doctors have told me, "we just don't know" when it comes to HIV. It took 10 years to find a drug regimen that my virus didn't become resistant to, that I could tolerate, and that finally strengthened my immune system somewhat.  

    Support (and research) for HIV+ people tends to be focused on men so I've always felt like the odd person out.  (Going through menopause and juggling HIV meds was interesting!  How to tell what was causing what symptom!) 

    Apparently, the chemo/HIV drug interactions are significant, but since HIV+ people were excluded from early cancer trials, there are no guidelines for dose adjustments.  And it'll be several years before they become available.  

    I'd rather not be a guinea pig anymore, and I'm beginning to wonder if I'll be strong enough to tolerate chemo.  But I am trying to stay positive -- it's just a roller coaster of emotions.

    Anyway, it's surprising and really wonderful to get so much support after all these years!  Thank you again!  :-) 

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  • DiDel
    DiDel Member Posts: 1,329
    edited October 2011

    etherize I am so sorry you have so much to deal with as you look towards treatment. I did 4 rounds of TC and really listened to all the advice I could for avoiding germs. I went to a website chemocare.com and they have lots of great tips for diet and daily living to get through treatment. I do have a very good friend who is 20 years out from her HIV diagnosis so I know its not been an easy road for you.

    Everyone is here for you anytime you need. {{{{Hugs}}}} to you and please keep posting so we know how you are doing.

    All my best to you to get through treatment as smoothly as possible.

    Diane

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  • steelrose
    steelrose Member Posts: 3,798
    edited October 2011

    etherize...

    It was surgical menopause at 45 for me (ugh). The road to NED was extremely rocky, but I am very grateful to be here! And I know what you mean about not knowing what symptoms are caused by what condition or med. It's crazy making!

    I'm very glad you're here. We all learn so much from each other. Please keep us posted.

    Rose. 

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  • marie5890
    marie5890 Member Posts: 3,594
    edited October 2011

    Etherize,

    I have nothing to add that these other ladies haven't already other than soldi support and love.

    I dont know if you feel something of a "guinea pig" or a "pioneer" with two big whopping doozies of diagnosis like you have.

    Im so glad you found this forum, even if most here can't "fully" relate to the specifics.

    But all here can relate to the "THIS REALLY SUCKS!!" part of it all.

    Prayers and warm thoughts to you. Always. And to your husband as well. This can't be easy on him or any other members of your family. 

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  • etherize
    etherize Member Posts: 423
    edited October 2011

    Thank you ladies!!  I so appreciate your great comments.  DiDel, thanks for the tip on chemocare.com!

    Rose, I'm really glad you have NED!   

    I just came back from meeting my MO.  She's very young (looks about 10!) but seems pretty sharp.  

    She recommended TC at a lower dose due to my HIV status, which is the regimen I was "hoping" for.

    But she also recommended removing a lot more lymph nodes because my tumor was aggressive and the one positive lymph node was "bursting" (my word, not hers).  And if I can't tolerate the chemo, or the drug interactions are too severe, then at least I'd have a more aggressive surgery on my side.  It makes sense, although I am horrified at the idea of another surgery, the lymphedema risk and the dreaded drains!

    She said she consulted with two other MOs at Kaiser and they agreed with her.  (There are five MOs there, and I'm guessing they'd all agree).

    marie, thank you for the warm thoughts to my husband, too. :-)  I think he is scared of the drain "issue" as well as the idea of giving me Neupogen shots.  I think I will try to go in and have the pros do that -- I sure can't do it myself!  I'm such a baby! 

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  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2011

    etherize,

    I just saw you post. I really have nothing to add except to say we all are here for you. Your positive attitude will go a long way during the next few months. Are you having the TC over a longer period? I know in my case they wanted to do 4 treatments dose dense.

    You mentioned some kind of estrogen reducing meds. I'm on Femara, and have not had to much trouble with it. I do have some helth issues, but no where as involved as you have.

    Again just want to let you know you will find so much support on many of the discussion threads.

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  • etherize
    etherize Member Posts: 423
    edited October 2011

    kira, thanks for your comments.  

    My MO didn't say if I'd be doing the TC for 4 or 6 cycles.  I think a lot depends on what happens with the first treatment; it's all kind of an experiment since there is virtually no research on bc and HIV.  I really, really don't want to do any more than 4 treatments, even on a lower dose.  Also, she doesn't recommended getting a port because it's another surgery and there's a risk of blood clots.  I've got good veins so I think I could do 4 without it, but I don't want to do more ...

    I'll be taking Arimidex for hormone therapy.  That seems like years away right now. ;-) 

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  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2011

    etherrize,

    I can truly understand you not wanting to do more than 4 treatments, but honestly if you Dr. recommends 6 I would go for it. I was not given the option by my now former Onc. Lets just say I truly wish I was given that option.

    As far as the port I didn't have one, but can say I was planning to have it put in before the second treatment, but never got that far because the treatments were stopped. My Onc. felt the port wasn't needed, but the BS was concerend because I have very small veins. TC can be very hard on the veins, and if any does leak out it will damage the skin.

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  • etherize
    etherize Member Posts: 423
    edited October 2011

    Did you stop TC because of the side effects?  

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  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2011

    It is very complicated, it had to do with having radiation before the chemo. If I had it to do over I would still get the chemo, but wait a longer period before beginning, and not doing dose dense. It has been a learning experience for me as well as for my Dr's.

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  • etherize
    etherize Member Posts: 423
    edited October 2011

    Oh, I see.  I hope the bad effects are all behind you now and you're feeling much better.

    I spoke to my MO today and it will be 4 cycles, lower dose.  I think all these drugs are hard on the veins.  From what I've read the anthracylines (especially Adriamycin) can be very damaging if they leak out onto the skin.  I can't take those anyway, due to heart issues caused by the HIV drugs I'm taking.  In fact, of all the regimens, TC is the least harmful for my situation.

    Bottom line is ... all these drugs (for HIV and chemo) are somewhat toxic and can have damaging effects and the best we can do is try to make careful decisions, balancing risks and benefits. :-)

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  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2011

    I am feeling great. I had my visit with my new Onc. today, and his remark was I had the blood workup of a much younger person. I was very happy to hear that.

    I agree about having to do the best we can to balance the effects of all the drugs we take.  In the past I never thought about what the drugs I was taking for other issues was doing to my body, but I sure do now.

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  • etherize
    etherize Member Posts: 423
    edited October 2011

    Yay!  So glad you're feeling great and had those wonderful results.  Onward and upward!

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