Controversial as it might be - is anyone currently taking HRT with ER Positive, HER 2 breast cancer

lorrigb
lorrigb Member Posts: 1 ✭
edited June 2018 in General discussion
I hope someone can help me with this question. I am just over 3 years since my BC diagnosis plus 6 rounds of chemo and radiotherapy. I am now 55yrs and am suffering terribly with hot flushes 3 or 4 a night and between 5 and 13 each day. Initially I was on Arimidex but due to arthritis complications after about 5 months eventually agreed to try Tamoxifen although I was tempted to resist everything - but fear got the better of me. I am now taking Tamoxifen and Effexor (although Effexor only helps a tiny bit). Have tried, Catapress, Lyrica, Zoloft (all caused serious issues) and just weaned myself of 3 Gabapentin a day due to having had 2 serious falls for no real reason in the last 6 weeks (only been on for about 7 weeks).
Both my surgeon and my oncologist have suggested taking HRT if the Gabapentin didn't work even though my breast cancer is Oestrogen positive. Their rationale is that they are now prescribing Tamoxifen to young women with a significant risk of BC and the way in which it works (in layman's terms) is the Tamoxifen binds to the oestrogen and therefore the oestrogen doesn't get the same opportunity to attach to BC cells or something similar. My risk of BC only increasingly slightly with the HRT. I am contemplating this and have been prescribed an Estalis patch to try. If it is assumed safe for young women to use with high levels of oestrogen in their bodies, surely it should be okay for someone at menopause as long as they are taking their Tamoxifen reilgously?
Has anyone else gone down this road - I would welcome any feedback. Thanks
Tagged:

Comments

  • Nadi
    Nadi Member Posts: 619 ✭
    Hi @lorrigb I am so sorry you are going through this.

    I am 2.5 yrs since diagnosis, 49 yrs old, and had radiation, chemo and 12 months Herceptin.  I too suffered from horrendous and I mean horrendous hot flushes from chemo. Mine were every 20 minutes day and night. My onc would see me have a couple during my consultation! They have improved over the last 6 months but are still very frequent at times. I can deal with them during the day, but at night I am woken up repeatedly when I am just about to fall asleep.  They leave me so sleep deprived and after months of suffering in the past they put me into a physical and psychological depression. My best friend used to remind me that sleep deprivation was used on POWs as a form of torture and that's what it felt like. People who have mild hot flushes just don't understand how devastating they can be and how much they affect your whole life when they are severe.

    My 2 oncologists would not give me HRT even though my BC was oestrogen negative. But because my symptoms were so severe I would definitely take HRT if it had been offered to me. I can't take Effexor as I get terrible headaches. I won't take lyrica for neuropathy as my mother is addicted to it. Catapress also didn't help much. I have kept a detailed diary of things I eat and do to determine if there are any obvious triggers, but haven't been able to identify them.

    In the end I took Endep 10 mg a few nights a week on an as needs basis instead of regularly  just to get some decent sleep. This helps a lot. I also tried acupuncture which helped. But mostly I have learnt to live with it. I seem to have weeks where the hot flushes are worse than others. Like last night  when I had around 10 and now I am going into work late today because I am once again sleep deprived.

    My Quality of Life is just as important as quantity, so I would consider HRT, BUT having said that at the moment, although I still have bad nights like last night, I seem to be getting by. I also found a good psychologist or psychiatrist with experience with cancer and chemo effects can help a lot. So maybe check that out before trying HRT.

    Whatever you decide I wish you all the best and hope that you can find some relief soon.

    Nadine

  • kezmusc
    kezmusc Member Posts: 1,544 ✭
    Hi @lorrigb,

    This stuff sure does mess up your life doesn't it.  I am 46 and 18 months past diagnosis. My cancer was 90% both ER and PR positive.  I am on Tamoxifen and the thing gives me a heck of a time.  At the start I was having up to 20 or 30 flushes a day, lasting anywhere from a minute up to 10mins  plus an array of other symptoms.  The flushes  would make me dizzy, nauseous and slightly off balance at times.  And constant sleeping problems as well.

    I decided to go off the drugs for a few weeks.  By the end of week two, the flushes had started to calm down.  They were still there, but no where near as intense nor did they last anywhere as long.  I went back on Tamoxifen after week 3 as I was too scared to stay off for long. I stayed on them for another three months then off again for three weeks.  I do this mostly for the other side effects, but each time I go off, the flushes come back less intense. Not sure if things start to level out with the little breaks but that's how I have to manage this drug at the moment or I just wouldn't take it at all.  It interferes with my life too much.

    Maybe ask your oncologist about a little break and see if that helps sort things out without having to take any other drugs.  

    xoxoxo




Categories