Most effective hormone treatment for HER2+?

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Alicethecat
Alicethecat Member Posts: 535
edited June 2014 in HER2+ (Positive) Breast Cancer

Hi ladies

My onc wants me to take a hormone pill because as well as being HER2+ I am also PR+ (but not ER+).

He says that the medical community does not understand how all the pathways that drive breast cancer work. It may be that the progesterone and androgen receptors also have a part to play.

I started Arimidex (stops androgen teaming up with progesterone) on January 2 but had to come off it on Feb 1 because I felt as if I would pass out.

Which hormone therapy have your oncs prescribed for you?

Best wishes

Alice

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited February 2013

    I initially took Arimidex but was quite depressed, so I switched to Aromasin and am so much better on it. I hope you find something that you can tolerate.

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  • sduch1
    sduch1 Member Posts: 104
    edited February 2013

    Hi Alicethecat, I was PR+ and ER- and the tumor board decided that I do not need hormone treatment. I am still a little uneasy about it but that is what they decided for me.

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited February 2013

    Hello Suzie and Sduch

    Thank you for taking the trouble to post about taking or not taking an aromotase inhibitor.

    After having such a terrible time on Arimidex (low white blood counts left me open to infection, a trip to ER for IV antibiotics and really bad flu), I am too scared to take an AI at present.

    Will discuss with the onc on Friday.

    I hope he decides the same as your tumour board Sduch.

    Don't really want to take a hormonal pill at all. Need to be in tip-condition as looking for a new job and can't afford to be ill again.

    Best wishes

    Alice

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  • sduch1
    sduch1 Member Posts: 104
    edited February 2013

    Good luck Alice---I will be thinking of you!

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  • Letlet
    Letlet Member Posts: 1,053
    edited February 2013

    Hi,

    I am ER- and PR+, my onc strongly advised me to take Tamoxifen, I took it for 9 months until horrible bone pain made me stop it. I felt happier immediately and found out that it made me depressed as well. She still insisted that I take s omething, so I tried Fareston for 10 days, it was worse not physically but emotionally, I felt super depressed. I stopped that as well.

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  • sduch1
    sduch1 Member Posts: 104
    edited February 2013

    If it makes you feel any better, when I was first diagnosed the local hospital I went to wanted me to take a hormone therapy (Tamoxifen) for 5 years as part of my treatment plan. When I switched to Mass General, they removed hormone therapy from my treatment plan after my oncologist consulted with the top endocrine specialist/oncologist at MGH and the rest of the tumor board.

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited February 2013

    Welcome Letlet and hello Sduch!

    So good to be corresponding with ladies with the same hormone profile. There aren't that many of us!

    Very interesting to hear about your experiences with the hormone pills. I wonder if there is something about our profile that means we can't tolerate hormone treatment very well. Pure speculation, of course. I'm not a doctor or researcher!

    Thank you Sduch for your comment re the specialist at Mass GH. Before I started the whole breast cancer treatment I went for a second opinion at the Royal Marsden Hospital in London. Even the onc there only suggested 'consider hormone treatment'.

    Interesting...

    Best wishes

    Alice

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  • sduch1
    sduch1 Member Posts: 104
    edited February 2013

    I know, part of me wants the extra ammo of hormone therapy but drs don't seem to think it will provide additional benefit. And, worried about side effects. Im wondering if either of you had bad hot flashes before you were on hormone therapy (or after you stopped it). Good luck with the job search Alice!

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited February 2013

    Hello Sduch and Letlet

    I didn't have bad hot flashes before Arimidex, even when I completed the menopause at 47.

    Had a few hot flashes on Arimidex but that was the least of my problems (itchy skin, feeling like I was about to pass out). Could not take Tamox as had blood clots on chemo

    So pleased that I am no longer on Arimidex and am not taking any hormone treatment. For me, personally, I'm putting my money on Herceptin!

    Hope you are well.

    Alice

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  • Twiceasnice
    Twiceasnice Member Posts: 117
    edited February 2013

    I have been on Tamoxifen for about 2 1/2 years and had an ooferectomy in Dec, 2012. 

    I am meeting with my oncologist tomorrow about switching from Tamoxifen to an AI, since I hear the outcomes are good from studies.

    Any specific questions I should ask or things I should know about before making a move? I hear AI's are easier to tolerate than Tamoxifen. Thanks!

    (I was diagnosed with Stage III ER+/PR+ and Her 2 + BC in 2009)

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2013

    gemini - Hi!  I lived in NOVA for 10 years - in Springfield!  I would recommend that if you make the switch from Tamoxifen to an AI that you ask for a bone density scan first as a baseline if you have not had one recently.  Because Tamoxifen only blocks the receptors but allows estrogen to circulate and benefit bones and heart, switching to an AI may cause bone loss and lead to osteopenia/osteoporosis.  It is important to know your status on this prior to starting an AI.  AIs come with many of the same side effects as Tamoxifen, but because they suppress estrogen as opposed to blocking it, there can be additional problems such as higher cholesterol, joint pain, sexual side effects, etc.  Many of us have had to switch from one to another to find the one with the least SE for us as individuals.  The generic versions of these drugs are made with different fillers and these are what can cause some side effects so if you find one that works for you it can be important to try to use the same manufacturer consistently - you can usually set this up with your pharmacy.  Good luck!

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  • krifit37
    krifit37 Member Posts: 4
    edited February 2013

    I have Horrible hot flashes, so bad that my skin from waist up turns beat red and itches from the extra blood flow during the hot flash!! Ive had these since before diagnosis. Im on Arimidex and of course since i was Her2 + ER+ PR+ i cant take hormones!

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  • Twiceasnice
    Twiceasnice Member Posts: 117
    edited February 2013

    Thanks, all! Special K, great info.  Do you miss Virginia?

    So it looks as if you did TC-H chemo, like me. I haven't met too many women that chose that combo.  And it looks like you never took Tamoxifen, but skipped straight to the AIs. What was your experience between Arimidex and Femora?

    He put me on Femora (I guess it has added punch.) But he suggested I ask for the Sandoz manufacturer (which is the generic arm of Novartis.) He wasn't aware of any difference between generic and the manufacturer brand. 

    I'm going to look up a study he cited that showed a switch from Tamoxifen to Femora after 2 - 3 years gives an increased benefit of 4-6 percent; however, if you had high stage and node involvement, then the benefit is even greater. 

    Thanks again for the info.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2013

    gemini - yes, I do miss Virginia!  I just did a clinical vaccine trial in Washngton, D.C. so was up there every month between June and December - had a great time and caught up with lots of friends.  I will be coming up every six months for a vaccine booster so I will get my Virginia fix!  My son lives in Ashburn, in Loudon County, and goes to George Mason University.  We moved to Tampa due to DH's military service - but we may end up back in Virginia at some point, I miss the change of seasons.

    The TCH thread is full of us triple positive ladies - and many of the triple positive thread ladies did TCH.  I went straight to Femara because I had a hyst/ooph in 2001, so I was already surgically post-menopausal when I was diagnosed with BC.  I developed a trigger thumb on my dominant hand so I switched to Arimidex after 6 months, but my onc does prefer Femara.  Other than the thumb I noticed no difference between the drugs.  I am not opposed to going back on it and just doing a "wait and see" on whether or not I have problems with the thumb again.  The differences in the brands of generic meds are all in the fillers and dyes - not the drug itself - many people are sensitive to those added ingredients.

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  • Twiceasnice
    Twiceasnice Member Posts: 117
    edited March 2013

    SpecialK:

    Thanks! I'm curious what the clinical vaccine trial was? Was it at G'town? I did the Neratinib trial (the oral version of Herceptin) last year.  I think I didn't get the drug--it was a blind study--but the numbers reporting out of the study are good. So it looks as if the new regimin will be 1 yr of Herceptin then another year of this drug, but I could be wrong.

    Best of luck and here's hoping you land back in Va. soon. At least you get back a lot!

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  • monkeymom
    monkeymom Member Posts: 50
    edited April 2013

    I'm weakly PR+ and my onc recommneded Tamoxifen. I'm premenopausal (age 35). When I get closer to the end of Herceptin (I just started chemo), I'm going to discuss the Tamoxifen with him because I've been finding such mixed opinions in my research. Plus, since I'm only weakly PR, I wonder how much benefit I would actually gain? 

    If anyone knows of someone taking Tamoxifen for weakly PR+, I'd love to hear it. I don't think I've found anyone yet.

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