Letrozole, Zoladex & Abemaciclib

Hi Rozalia, thank you so much for your reply. I'm really sorry to hear about your issues, it's good that things have improved for you. I'm not surprised you're nervous about the estrogen cream!

I will definitely look into the things you have mentioned further. Thanks again & take care x

Oh Rozalia! That made me cry!! i am so sorry you are having such problems and am in awe at the quiet, accepting way you talk about them.! Do you think the Letrazol makes the symptoms worse and what have you done/ bern offered to make it better/ more manageable?

Hi Leaps & Nozzer

Thank you and sorry for the late response. With regards to the incontinence, it is not so bad now. I have not lost control in the street. Night can be tricky as I need to get my feet in motion to make it to the loo but so far no major mishaps. It's a bit like being pregnant! I take Mirabegron each night before bed, on the advice of my gynaecologist I do 15 minutes of kegel exercises each day (well at least 5/7 days) Urology referred me to a specialist physiotherapist who monitored how I did the exercises and who put on my phone the NHS squeezy app which helps me to remember and be motivated to do the exercises. On the urologist's advice, I try and have decaffeinated tea and coffee, and I have cut down on my glass of wine with my dinner (he said stop, I have reduced from 2 glasses to 1). I also have Tena Silhouette washable absorbent underwear which helps give me confidence. They are only for light leaks but to test them out I did try emptying my bladder into them and they actually coped pretty well. 

I am BTW not on Letrozole now after 6 months my oncologist changed me to exemestane, (Aromasin brand). That in part might be why I haven't had any further accidents in the street. Overall the change to exemestane  helped to an extent  but I still have not lost the weight I gained with the letrozole, my arthritis stiffness is worse and my eyes have changed sore dry eyes every day and cataracts developing. The trouble is we don't know what is genuinely age-related and what is down to a lack of hormones and leftover damage from the chemo. My feet have gotten very much worse, starting with neuropathy in the sole of my right foot, and distorted nails (I have had my big toe nail removed now). Ankle arthritis is increasingly bad and I have huge custom-made (NY NHS) orthotic boots size 10!! (pre-cancer I was size 8)

I am due to come off aromatase inhibitors this coming August and my oncologist (I was sent back because of increased arthritis) has said I could either try different brands of exemestane, anastrozole, tamoxifen or just stop. He said he was amazed at the way patients suffering with debilitating side effects persevered.  He said in my case as I was 80% through my 5 year stint the risk of stopping now was very low. Funnily having been given the option of freedom I am hesitating wondering just to be absolutely sure, should I stick it out for the last remaining 10 months. In the meantime I have tried a different brand of exemestane and am neither worse nor better so far; although my husband thought I was eating more and if that's the case and I put on weight I will stop it. 

Anyway, I am nearly there, hopefully, when I do stop with the aromatase inhibitors I will magically lose weight, be less arthritic and stop getting sore eyes and have comfortable feet.......  I WONDER if I will feel 10 years younger, I certainly since cancer have felt 10 years older than my actual age. Live in hope!

Don't feel sorry for me, I am lucky I have such a caring family. My daughter and son in law bought me a David Lloyd membership and I now do aqua fit classes 4-5 times a week. They are great I really recommend them to anyone with stiff joints or mobility problems. 

Am going to stop rambling. Good luck to all x

Hello,  I have been taking letrozole for nearly 5 months, some aching joints and disturbed sleep, but most worrying is a bad headache which can last 2 or 3 days. Has anyone experienced this? X