Can I throw this out there as I am very confused at the moment, I started 10 days ago being not sure whether to do this last treatment for 5-10 years, but oncologist seemed to be insistent. I have just done the predict tool and it came back as 0.9 percent benefit on top of the 94 percent survival rate after 5 years. 10 days in and my hair is already thinner, can’t sleep, bones ache and we won’t even mention the inability to have penetrative sex (sorry ladies).
I know we should take everything that’s offered, but after surgery, chemo, more surgery, then rads I came through all that still smiling and I felt ok and ready to face the world. My hair had started to grow, my eyelashes could stand mascara then bang I now feel like pooh.
I know it’s contraversial, but would welcome any comments good or bad to help me.
Sorry you haven’t had any replies to your question as yet, but hopefully someone will now see your post and get back to you. If you would like to discuss this with one of our staff then please feel free to give our helpline team a ring, they’re here to support you through this. Calls are free 0808 800 6000 lines open weekdays 9-5 and Saturdays 10-2.
Hi Bondgirl, I’ve been on Anastrozole since January and whilst some of the side effects have got better, the aches and flushes and so on have put me very much in two minds about doing this for another 4 years. My stats are 1.5% improved outcome over 5 years and 4% over 10. I took myself off the tablets for a week recently and felt there was some improvement but then chickened out so next appointment with the oncologist I’ll discuss in more detail. Unfortunately my experience so far of trying to have an adult to adult conversation hasn’t been good so I may also ask to change oncologist.
I’d certainly say it’s worth giving it a more time - it took a month or more for my side effects to settle - and also to try other brands of Anastrosole as they definitely have different side effects on me. Hope this helps.
I’ve been on Anastrozole and Zoladex for coming up for 8 years now and I can honestly say the symptoms do get better, well they did for me.
I too had aches, bone pain and crushing tiredness when I first started it, but it does pass. The only thing I’d say is my hair did thin quite dramatically in year 7 (there are posts on here as I was seriously concerned), but I’m pleased to say it seems to be recovering…I’m certainly not thinking of going back to a wig anymore.
When I spoke to my onc about stopping it they went through the predict tool with me, and with the drugs my chances of getting to 10 years survival were so much higher so I decided to carry on. When I’ve done the full 10 year of the drugs I’ll still only be 48 so to me having an old lady head was worth the chance to see my kids grow up.
It’s a decision only you can make, but I would recommend giving it a little longer to see if the SE’s improve.
I’ve been taking Anastrozole since Sept. 2010 - have had the lot although 6 months in I was put on Nastroza since it was cheaper … loved Nastroza very little side effects with achy joints and bone pain but the manufacturers found it wasnt ‘financially viable’ to produce so took it off the market after 12months . Wham ! back on Anastrozole and was hit with thinning hair , even my hairdresser started talking about wigs and hair pieces!! Although I have arthritis the change was dramatic and i really considered whether continuing with this meds was viable for me. Mood swings ( although I dont think so!) is an issue but here is the best bit - it does get better - obviously its not all going to vanish but the intensity of the flushes will lessen as will the frequency.
There will be days, dependent on all sorts of thinks such as What you did the day before - temperature ( hot days and very cold days are worse ) sleepless night you’ll toss and turn so you may be more achy the next day. you learn to read your body so life is that much sweeter. But I am persevering because I dont want to leave that door open - if it comes back how will I know I didnt contribute to its return . So being a coward I’ll continue even though today I’ve been told it may be for another six years . My GP is good and gives me painkillers and inflammatorys thats the best i can hope for . If you feel you have reached your limit with pain go back to your GP - get help. Try Yoga it really does help to relax those muscles and free up your brain .
I’m not sure of your age and daily commitments eg young children, working etc this does make a difference but trust me love not enough for you to leave that door ajar. Buy some really nice cream and massage your achy joints , warm baths , high thread count sheets ( they cool off quickly) keep a light blanket by your bed .