Hi there ..

Your doing amazing ... high 5 to you for keeping going ...  

I was put on tamoxifen, which is a tad kinder then your one .. but there's lots come on here chatting about after effects .. and I looked it up and they said it's for oestrogen positive lump.... so I'd deff ask if I were you .. though I'm not qualified,  so find out from your team ...

I had huge emotional rollercoaster for about 4 weeks in the early days ... I wish someone had warned me, and I'd have been prepaired ... then I had about 18 months , relatively o.k ... then , like I read on here ..my bones and joints starting hurting , to where I was on the bed most every day, taking painkillers ..like oramorph ...  I did it for 6 more months, but had to stop, as I have stenosis and scoliosis as well as arthritis too ... 

But so many have different side effects .. some have none and sale through ... but read up on it first so you know what MAY pop up ...   really proud of how far you've come ... Chrissie xx

Hi, I did phone the Oncology unit as I wanted to find out more about the drug and its side effects.  After all, it's a powerful drug that I might be on for 5 years and I wanted a bit more info about the HER2 pos/neg as I dont really understand that, not being medically trained. Its more difficult these days with the Covid as we are not getting face to face consultations. The Oncologist department just said that I have been given the right drug for me and that was it. Will try to find a more info from my GP as I have asked her to ring me after her surgery. I realise the Doctors are all so busy, but I feel I should be a given a little time as this is a life saving treatment. Sometimes Dr Google is more confusing!

Silver

Hi,

I was in exactly the position you are in regarding anxiety over taking these hormone blocking meds.  I dithered for weeks, thinking that at my age I would rather have a shorter, good life than a longer one of pain and sickness.  In the end my doctor said to me that if and when cancer comes back, it will be painful and very unpleasant, and wouldn't it make sense to try something that could put that off for as long as possible, and if the medication became unpleasant, then I could stop taking it.

So I started taking it.  So far, so good. For the first couple of weeks I got a hot flush at the same time every evening that lasted a few minutes.  I felt a bit queasy and went off my food,  I even lost half a stone in weight, but by the time I was to start my second packet of tablets the appetite (and the half stone, alas) had come back.  I now have the occasional hot flush lasting a minute or less. I might get a few aches and pains more than I used to, but nothing more than I have suffered for years with osteo arthritis, so I am continuing to take them. However, if I do start to get symptoms that cause me distress I shan't hesitate to stop taking them. I have to say that six months on from my mastectomy I am feeling much more like my old self. 

Christine x

Yes, I have felt anxious about starting Anastrozole but if it helps prevent that awful cancer treatment returning I shall definitely try it.. My lovely GP phoned me today and put my mind at rest explaining about the HER2 neg, so feel better taking it. Do you take the teblet in the morning or the evening? Wondered if it interfered with sleep patterns? 

I'm feeling quite well but still have radiotherapy to contend with for 3 weeks starting on the 18th May.

Thank you for replying,

Silver

Hi again,

To be honest I think I sleep better now than ever. I take the tablet before going to bed, along with my pain killer for my arthritic knee that used to wake me in the night (before I finally accepted that I should take a pain killer) on the advice of a friend who suffered quite badly from nausea if she took it in the morning.

I feel as if I got away with it because I had a mastectomy, then lymph node clearance which turned out negative so I didn't need rads.  My surgeon didn't recommend chemo for me because there have been reports that side effects can be quite harmful for over seventies and I was very happy about that.  I refused to take bisphosphonates as well as the Oestrogen blocker, despite the risks of getting osteoporosis, because when I checked on NHS Predict it only added  a 1% extra chance of living however many more years. However my blood test and Dexa scan showed low vitamin D and some bone thinning, so I also take a daily supplement of calcium and D3.

Good luck with your rads. The people I know who have had radiotherapy have said the worst thing about having it was getting to the hospital!

Christine xx

Oh thank you,that's decided me, I'm going to take the first one this evening and hope I sleep well. I too have had  mastectomy and lymph node clearance but cancer cells were found in 2 nodes. The chemo made me feel awful especially the 3rd one where I ended up in hospital so was very glad to stop that. I have a couple of slightly enlarged lymph nodes on my chest wall so they will zap those with radiotherapy that's the end of my treatment apart from the Anastrazole so hoping I've done enough to eridicate any rogue cells. I'm also taking Adcel -calcium and vit D  for my bones. My GP was very insistent to take bone vitamins. I didn't  think Bisphophonates cause any side effects?  I have an appointment for that in a few months time. . 
ive also lost my hair it's growing like a fuzz and I wake up with it sticking up over the bald patches, not a good look! I've read that Anastrazole can cause hair thinning, the last thing I need, To think I used to have highlights every 6 weeks! Oh well saved me a fortune! 

Best wishes, Christine, Silver

Hi 

Just jumping in to tell you my experience with Anastrozole which I have been taking for about ten months now.

To be honest, it does cause some joint pains but I found exercising about four times a week, either gym or walking , made a big difference. I also went to my gp who prescribed Amitriptyline 10mg which is a very small dose used for chronic pain and has the benefit of helping with sleep.  I am a nurse and have worked crazy hours for years.  Dealing with a cancer diagnosis was bad enough and I felt I just needed to sleep a 'proper sleep' like most people.   I am not completely free of joint pain but have decided it is worth it to take the Anastrozole 1mg.    I also had two positive lymph nodes and axillary clearance. I do have bisphosphonate infusions.  Anastrozole causes some minor hot flushes, but I am glad of them.  We go round and round in our heads why we got this horrible disease.  For me, I am fixated on the fact I did not suffer hot flushes through menopause which is why I had a lot of oestrogen floating around feeding my horrible cancer.   I was 8/8 on the Allred scale.   

Everybody is different, but Anastrozole can help starve cancer cells floating around.

Trisha x

Thank you for your information. I have taken my first tablet this evening so I expect it will take a little while for side effects to emerge. If I have any pain I will certainly call my GP. What is the Allred scale? I haven't heard of it. 
I have radiotherapy starting soon for 3 weeks , even more stress with Covid 19 at the hospital. 
If Anastrazole helps keep cancer cells at bay then I will persevere.

Silver 

Hi Silver

I think you may find your Allred score on a copy (usually you receive every copy of letters written) of a letter written from the hospital to your GP.  You get the heading of the pT N M and when it says oestrogen receptive you will get a number mine was 8/8.  That is the Allred score by which they measure, in my simple language, how hungry for oestrogen your tumour was.  Mine was 8/8 (the hungriest)  sometimes it is less than that.  Don't worry about radiotherapy.  The hospitals are always clean and now they are as clean as clean can be.  Do really look after your skin.  Whatever cream you are prescribed get and start using before your treatments.  I used, with great success, Epimax - available on prescription.  I put it on in the morning, straight after treatment and again at night.  Never had a problem.  If it is the left breast you will need to hold your breath for 20 seconds.  They talk you through this and the staff are wonderful.  

Because of Covid I couldn't have my one year post surgery mammogram.  I was nervous about it but disappointed not to have it.  If I have anything found I think it will be small because of taking Anastrozole.  I am due another Bisphophonate infusion in June and hope to go for that.  I know we all think there is not much benefit looking at Predict but this truly is a very good preventative medicine.  I shan't go into the ins and outs of its preventative qualities but I wouldn't go without it.  Trust me I question and research everything - I'm a registered nurse the worst kind of patient!!

Trisha x