Has anyone been in this situation? I’d love your thoughts. I’ve had a rough ride with "systemic " treatments although I coped well with surgery (mastectomy May 2013) I think it’s because I’m very small and very sensitive! I had a rough time with sickness during chemotherapy and then had to stop Tamoxifen because of an allergic reaction to it. I was then given anastrozole although the consultant was a bit concerned because , at 51, I already have osteopenia one score below osteoporosis. I was asked to take calcium supplements (no problem) and Risedronate (which made me sick so I didn’t take it)
I started the anastrozole in May and thought I was doing OK on it. But after 3 months the joint pains and stiffness started to get worse. During the night every joint in my body aches and during the day I get really stiff if I sit for any length of time.
I wrote to my oncologist asking if I could half the dose to lessen the side effects. He has written back explaining the 1 mg a day is a standard dose and seeing as I’ve had so many problems with hormone treatments, maybe the time has come to call it a day and accept hormone therapy is not suiting me. Although my cancer was 8/8 +ve for both oestrogen and progesterone and had invaded blood vessels, it was a small grade 2 lump and the lymph nodes they tested were clear.
I wish I could tolerate the anastrosole better but the joint pains and stiffness are depressing and the thought of it for 4 more years is miserable. But am I brave enough to stop. The effect of the anastrosole on my bones also worries me.
I realise that ladies who have decided to stop hormone therapy because of side effects may not be reading this, but if anyone has any thoughts I’d find it helful to hear them. I know its my choice eventually but this forum is so useful for bouncing thought around. Thankyou.
Hi Hearty, whilst waiting for replies here, please also feel free to call our helpliners to talk your concerns through, lines are open during the week 9-5 and Saturdays 10-2 on 0808 800 6000
Hello Hearty,
It was interesting reading your post because the problems and concerns you have been having with hormone therapy reflect my own experiences the past year.
I started off with Tamoxifen after my WLE/SNB in October 2013 but after four months my oncologist switched me to Anastrozole because of the bad reaction I had to Tamoxifen.
I have been taking Anastrozole since March 2014 and, like you, after the first three months, the joint pain and stiffness in all my joints became unbearable. My DEXA scan revealed I had Osteopenia so I was prescribed Calceous D3.
Since June, my GP prescribed various strengths of codeine painkillers to try to control my pain with little success. They all made me feel nauseous with terrible headaches. I’m allergic to anti-inflammatories, Tramadol and have now concluded that codeine does not agree with me either.
By July, the pain and stiffness in my joints was unbearable. With no pain relief and my quality of life being significantly compromised, I began to consider whether to stop taking Anastrozole. However, my cancer was 8/8 positive for oestrogen and 7/8 positive for progesterone. Despite no spread to lymph nodes I am too scared to stop my hormone therapy despite the dreadful side effects.
Late July, I changed my GP and she prescribed me Amitriptyline to see if it helped reduce my pain and stiffness. Amitriptyline is one of the ‘old’ tricyclic antidepressant drugs but scientists have discovered that if prescribed at low doses it helps with neuropathic pain.
Thankfully, Amitriptyline has made a significant difference in reducing my pain/stiffness. I started with 10mg in July for 4 weeks, then 20mg and 25mg for the past six weeks. It has taken quite some time to get the dose right to control the pain but it has worked and I am feeling much more positive and less miserable.
The pain and stiffness has not disappeared completely but it is no where near as distressing. I am sleeping much better and my joints are more flexible. I am no longer considering stopping Anastrozole which is another positive.
Deciding whether to stop taking Anastrozole is a personal decision and not an easy one to make. I am just relieved that my new GP took the initiative to prescribe me Amitriptyline because it has enabled me to continue with my hormone therapy. Only four more years to go!!!
Sorry for the long post.
Peace and Positivity,
M x
Hi Hearty
I had a mastectomy in December and started Anastrozole on 1 Feb after the seroma on my wound healed.
I started with symptoms on day 5 but they were nothing like month 3. I have had the most awful pain and felt like a junkie waiting for my next fix of pain control. Saw my Doctor for follow up Sept 22 and she said the cover so small if affecting my life to stop it. Now 5 weeks on , still got pain in ankles and hands but down to Nurofen twice daily. It is a personal decision , my Mum had BC when she was 45, mastectomy but no further treatment, she is 87 in April. So I have taken control, I do not want my life to be defined by breast cancer so will take my chances ! Good luck with whatever you decide
Lesley
xx
Just wondered if you stopped. I was diagnosed Aug 13 & 8/8+ve started letrozole Apr 14 because of aching joints & stiffness moved onto anastrozole Apr 15 aching not as bad but my flushes & general feeling unwell continue, hence why I’m on here now. Also my bone density was above average before I started & 2 yrs on I was shocked when my surgeon wrote to me to say I had osteopenia of the spine. Such a difference in 2 yrs! I have thought many times of stopping & wondered if anyone had.
Hi. Im due to have Anastrazole but very anxious, as I am 5 years post hysterectomy (endometrial cancer) and, after surgically enforced menopause, I’m already achy of every joint before treatment starts. I’ve heard lots of positives about amytryptaline but worried about taking this and driving/working, as at standard treatment dose for shingles or depression it’s contraindicated. M were you given any advice about this? I do want to take the medication when it’s finally prescribed (I’m still waiting for Oncotype results to consider chemo), as I was 7/8 for oestrogen and my first cancer was also oestrogen +ve. I was on the point of begging my GP for HRT despite the risks when I was diagnosed with BC to manage menopausal symptoms - so anxious it will get a whole lot worse. Xx
Hi all, just want to throw in my thoughts about Amitriptyline for side effects of Anastrozole.
I have MS and have been taking Amitriptyline for about 7 years for MS pain. It’s a very good drug. It’s been around for years…in fact there was someone on an MS forum who had taken it for over 30 years!
When you first start it, and when you increase the dose, it does make you feel like a bit of a zombie, but hang on in there as your body will soon tolerate it well.
Also, esp at first, it can interfere with sleep. A lot of people with MS take it early evening which really helps and then in fact helps you sleep well. I take 25 mg at 6.30 pm and again after breakfast…so 50 mg a day.
I will increase the dose if Anastrozole gives me joint pain (I’ve been on Anastrozole about a month).
I hope this helps and reassures people who are considering Amitriptyline.
I’ve just tried and failed to post a reply to you both Pat and M, so hopefully not going to repeat myself. A big thank you to both of you for reassuring words. I had started to consider citalopram just before I was diagnosed. I have a high pressure/stressful job I’m keen to get back to but was foggy brained already and hopefully it won’t get worse! Thank you again. Where would I be without this site! Xx
Hi ladies, I was 47 when dx with grade 3, er+ cancer, 26 lymph nodes and 2 tumours measuring 8cm and 2cm. I had mx in sept 14 (2 years ago tomorrow!), chemo oct-April, rads July 15. Started tamoxifen June 14 which I stopped in March this year for recon surgery. Felt so much better off it - it gave me 4 hot flushes an hour 24 hours a day, incredibly low mood which wasn’t helped by antidepressants, joint pain, weight gain etc. Amitryptolene didn’t help with pain, depression or insomnia.
Oncologist insisted I tried an alternative treatment so went on to zoladex and anastrazole in May - even worse total body drenching sweats several times a day.
So I came off everything in July. I decided that I’d rather my kids have a happy, normal functioning mummy for however long I have (could be 40 years?!) instead of a grumpy, drepressed, fat zombie which the drugs turned me into.
I may live to regret my decision (especially as my period has returned) but my thought is that they cut the cancer out, zapped my whole body with chemo, zapped. Targeted area with rads and then 18 months of hormone treatment - really, is there anything left to return? Surely my odds are back to the same as anyone in the street??
Just had a “great” evening at hospital to see onco surgeon and mammogram. Oncologist walked through reception a couple times and stopped for a chat to see how I was. Again whilst I was in radiology waiting for mammogram he walked passed and suggested I have brca gene testing and he’d review ct scan the surgeon had referred me to. Back to see surgeon who couldn’t have been more human and reassuring.
So it seems some really care, some don’t, others would love to care but just don’t have time to show it.