Hormone drug worries

Hello, I’m sorry to read of your diagnosis, and concerns about hormone treatment. I was diagnosed just over four years ago with a hormone sensitive breast cancer (oestrogen 8/8, progesterone 6/8). After five months of chemo I opted for a mastectomy, and also had 3 weeks of radiotherapy. Anastrazole (similar to Letrozole) was prescribed for ten years, and I have been taking it for 3 years 6 months now. I was post menopausal, but I had not been taking HRT. 

I won’t lie to you, I do suffer from sore, sometime painful ankle joints if I do too much.  But that is all. And for me, it is manageable with evening rest and warmth to the affected area, if needed. Some people have more troublesome side effects, but other people have none at all. I know ladies who have struggled with the side effects for a little while but they didn’t last long. We are all different. But I willingly choose to continue with it, because in my case, I was told that it is more important (with respect to preventing a recurrence) than the chemo was. However, I do not suffer any fatigue at all, and my life is happy with plenty of friends, social groups and hobbies. What I am trying to say is that Anastrazole is a small part of the total sum of my life. 

You could try it  and see how you go, seeing if things improve for you. Or you could try it and change to something else if it is challenging for you. Plenty of people on this forum have done this, and their situation has often improved. 

I’m sure that other people will come on with further management tips for you.  Xx 

Dear Cloudier. I'm equally so sorry for everything you've been through and I can't tell you how much I appreciate the time you've taken to reply. I've got a day to myself today and I just can't stop crying. I think the rollercoaster of the past few weeks has just suddenly really got to me, even though my prognosis is so good. I know I'll feel better tomorrow. Sharing your experience on Anastrazole, with such manageable side effects and no fatigue at all, is just what I needed to hear x

Hi Joanofarc

Sorry you are so worried about the side effects of hormone treatment.  I was diagnosed with ER 8/8 PR 8/8 and had tamoxifen for a year before being switched to letrozole as post-menopausal and things are just settling down for me a bit at around 7 months of being on it.  I have experienced side effects, but on top experienced a very abrupt menopause so that probably didn't help.  I get mainly stiffness, but absolutely no fatigue.  I have had points where I've felt a bit sorry for myself if I'm honest.  However, at no point have I thought I want to come off the medication.  Give it a try, you can change to another if it doesn't suit you.  I find exercise and especially just walking more often helps the stiffness.  My legs were very stiff to start with, but it has eased now and things are better.  My sleep is a bit hit and miss.  I believe magnesium is supposed to help, but no luck for me yet!  Hot flushes for me have improved steadily so hope this happens for you too.  I don't take any supplements to combat flushes as I'm not confident about interactions with the letrozole.

Hope you've stopped crying and are feeling a little more positive.  You may be one of the lucky ones who suffers very little and can get on with enjoying your life x 

Hi Joanofarc, good to hear that you are healing well after your lumpectomy. I had to come off hrt when first diagnosed, I was able to get another tablet prescribed to help with hot flushes. When I started letrozole the hot flushes increased again, so they upped my dose. I do still get some flushes, but they are now manageable. I do get some aching in my joints from the letrozole, but it only seems to happen during the night or first thing in the morning. Once I'm up and about I'm fine, so I've not found it too bad. It mighty be worth talking to your dr about something to help with the hot flushes. Xx

Thank you so much for this. Are you able to tell me the drug that helped with hot flushes? If not, no worries I will ask my GP. 

 And neither you or Lullabelle have mentioned hair loss? which has worried me too as I already have very thin hair. 

A day of crying but I fully intend to be a more active person and thrive in the long run x 

The one that was prescribed for me is Venlafaxine, but there are others they can prescribe. This one was recommended by the pharmacist at the chemo unit, as it wouldn't interfere with my chemo. When I mentioned it to my gp, they were happy to prescribe it for me. I have read other posts were ladies have be given other medication, so it's definitely worth having a chat with your GP.  I had found the flushes and night sweats awful, but they're not too bad now, thank goodness. Xx

Hi Joanofarc,

I am 5 weeks after my 2nd lumpectomy. I am 56 and post menopausal. I started on letrozole a week ago and I have Fibromyalgia (similar to ME). I too got told to come off of HRT as soon as I was diagnosed with breast cancer, so been cold turkey for 3 months. I know it is early days after just one week but I am so far coping. I suffer with already spoken about hot flushes at night but apart from a lot of duvet flapping, I do sleep. I do take 5mg of Amytriptolene though for non sleep with Fibromyalgia. Don't know if that's helping. I am exhausted on Letrozole and have aching on top of my fibro pain - it is a different pain. I am getting headaches too. However, being honest I don't feel that bad - not sure if it's because I live with tiredness and pain anyway but early days so hoping if this is as bad as it gets I can do it and rather this than a return of Cancer.

I was extremely concerned about taking the drug and on it for 10 years I believe, but I figured everyone is different and that side effects may improve over time.

I'd say go for it - they can change you onto another one if it doesn't suit you.

I have an appointment with an Oncologost in a few weeks to discuss any problems then Radiotherapy.

I hope you get on ok

Thank you so much for taking the time to reply. Fibromyalgia is a tough condition to live with, so I'm sorry to hear you have this.

After a day of crying yesterday I'm feeling more positive today. I will go for it. Possibly after having ME and learning to pace and cope with this over many years until I felt better, perhaps like you, I won't find the side effects of Letrozole to be that bad. I know my anxiety is making me jump the gun and I just have to wait and see. I'm seeing my oncologist in a couple of weeks and then radiotherapy some time after that. You are a step ahead and I wish you well x

I'm sorry to hear you have been anxious and upset. I've had days like that too and am a huge worrier. Being put on a drug for 10 years with side effects and affects bone density feels like a sentence.

I am just trying to look at the positives. I feel lucky they caught the Cancer from a routine mammogram, and I have two choices, I don't take the drug but risk the Cancer coming back or take the drug to prevent the Cancer and maybe live with some side effects. I think actually I just have the one choice. Like you I have fought the pain and tiredness and learned to live with it so I figure I can get through this. I know some older people who have been on letrozole for years and have no side effects so I'm hoping any that I may get will subside in time.

Everyone is different, you may be fine, I hope so

Hi Joanofarc , lovely messages already from the fine folk here. I’m another hormone positive pill popper (Anastrozole), details on my profile. I don’t love being on it and do have some of the side effects but they are bearable and, for me, worth it if it’s keeping the beast at bay. I’m due to stop after 7 years, in December. It helps immensely that I was able to retire early at 61 instead of working on till 65 as I’d planned. I know this isn’t an option for lots of people. 
I’d definitely suggest ‘suck it and see’, as others have said, you can always ask to change to a different hormone treatment if the one you’re offered doesn’t feel bearable. And many people are taking these drugs and coping fine with minimal side effects but we’re less likely to hear from them! Love and hugs, HFxx