Forum Discussion

JayMB's avatar
JayMB
Member
4 years ago

Hormone Therapy side effects post mastectomy

Hi, just wondering if anyone else has had similar experiences? I haven't been able to find anything anywhere and wondering what is going on with my body! 
30th July, I had a double mastectomy with reconstruction, expanders now, implants later, for early right sided, HR+ BC. I chose to have the left side removed as well to reduce future risk and give me a better cosmetic outcome as I wasn't a good candidate for the DIEP flap surgery. Post surgery histo results showed atypical and "pre cancerous cells" LCIS in the left as well so I am so pleased I chose to go ahead with the double mastectomy even though advised I was low risk. 
I am 46 years old, already perimenopausal, almost into full menopause so my oncologist started me on Zoladex beginning of June. The hot flushes which I'd already been experiencing for months grew in frequency, length and strength. The night sweats were out of control and the weight gain. Wow. I have gained 10 kgs since the first surgery on 7th May to now even with dieting. 
2 weeks ago (commencement had to be postponed due to surgery) I started on Exemestane. Started great, I actually  found the hot flashes reduced significantly and I'm sleeping better. But... I randomly broke out in a nasty, hot red rash last week that started across my chest and around the expander site. The rash spread to my neck, entire chest and truck and back and down my legs. It is insanely itchy and driving me crazy! I saw my GP who prescribed 50 mg prednislone as it looked like a classic allergic reaction. That did nothing so I went back after a cople of days and now I'm on 75mg a day. Finally a bit of relief after a week of hell. Still no idea what is causing this as it's not listed anywhere as a common symptom. Hoping the blood test will show something. 
To make things extra confusing, out of the blue I got my period! The last time I had one was back in January this year. I thought this would have been almost impossible now. 
Anyone had anything similar happen? 

3 Replies

  • I've been on varying doses of prednisolone for over ten years due to autoimmune diseases (3). During chemo, I developed an horrendous rash and my pred was increased +++...even had it intravenously for a few days in hospital. In the end, the decision was to limit the amount of systemic steroids (tablet or injection), and to rather just stay on my regular daily dose of 7mg and use a good cortisone cream on the rash. This meant that the majority of the drug was on the rash, rather than sloshing about through my entire body and only some of it ending up going to the skin. This worked well for me, and even now, almost five years after finishing chemo, if I get an "autoimmune rash" when one of my conditions has a flare, I use cream rather than upping my tablets. Having said all that, I think you should discuss this with your doctors, as I can tell you from experience, you don't want to be on oral steroids for any longer or stronger than absolutely necessary.
  • Hi @JayMB - so sorry you are having this reaction .... are they able to take scrapings of the rash and get it checked to identify it?  Has it broken the skin (weeping) or is it  just red and angry?

    i did a search on the discussions and whilst I haven’t read all the threads .... a few members have had rashes from a few meds .... there may be some tips....
    https://onlinenetwork.bcna.org.au/search?adv=&search=“Exemestane+rash”&title=&author=&cat=all&subcats=1&tags=&discussion_discussion=1&comment_comment=1&discussion_poll=1&group_group=1&within=1+day&date=


    All the best .... as @Sue_w says ... high dose prednisone comes with with its own problems if used long term. :( 
  • Hi @JayMB I haven't heard of anything like what you are going through and I hope you get some answers from your blood test results. Just a personal opinion (I'm by no way a medical professional), I would question the level of prednisolone as that is quite high and it can have some nasty side effects. Please ask your doctors as many questions as you can think of and get second opinions if you're not happy with their answers.
    All the best and take care XXXX