Anastrozole – ugh!!!
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7 posts since
16 Dec 2019
After having stage 2 hormone receptive cancer, I had a lumpectomy and radiotherapy in 2016.
Facing up to cancer and the surgery were a piece of cake, compared to the side effects of the medication.
I started off with Letrozole and put up with the side effects until one night near Christmas, I was pacing the freezing cold conservatory floor, to ease the itchiness and bright red soles of my feet, to no avail. Eventually, I was seen by Oncology and changed to Anastrozole.
Although better, the joint pain, dry nose canal & nose sores, dry mouth and teeth/gum damage, excessive sneezing and runny nose (despite it being dry!!!), anxiety, depression, weight gain, higher cholesterol, skin itchiness and irritation, frequent bladder infections and finally, such horrendous vaginal dryness and vulva pain (I cannot even insert a ‘yes’ capsule without it being agonizing) and the fact that I have physically been unable to make love with my husband for over a year, enough is enough. I am 57 and want a life!!!
I now have to have bladder surgery, which I am convinced is due to the fact that the Anastrozole is drying my body out on the inside and I feel like an old, depressed, unfit lady, who used to be fit and a happy bunny, but can now only do gentle swimming (i’ve been told I am lucky to be able to do that!!!!).
The Oncologist/GP and Pharmacist have suggested changing brands, but none of them have taken responsibility for this and I have been left as the ‘man in the middle’, desperately trying to sort this out, when I am the patient!!
Cancer truly sucks and now that the yearly follow-up appointments with the breast care nurses and Consultant have have been pulled in the UK, i’m sure i’m not alone in feeling totally let down and left to sort myself out re the ongoing 10 year medication regime.
I have taken myself off Anastrozole now and have done so for the last month. Have I done the right thing – who knows, but I can’t stand it any longer.
64 posts since
8 Sep 2019
hi I’m sorry to hear of your horrible side effects from this medicine I would ask your doctor change to a different one there’s quite a few to choose from and if nothing works you can have intravenous I’ve recently started letrizole and don’t feel any different probably the side effects may come later or hopefully not at all we’ll see I hope you’re feeling better soon
best wishes marie x
7 posts since
16 Dec 2019
Hi Marie
Thank you so much for your kind reply. I was previously on Letrozole, which in itself was awful. I think though that the Anastrozole is doing more damage internally, which is why it’s not so noticeable on the outside.
To be honest I’ve given up with the GP, actually GP’s and the Oncologist!!!! No sympathy re the symptoms and it wasn’t sympathy I was looking for, just desperate for some relief. I’ve seen more than one GP at my local surgery too, to no avail. It took so much courage to tell a female GP that I physically cannot make love with my husband anymore and that he can’t even touch me ‘there’, because I feel like it’s “dried up and gone away” and she didn’t even make eye contact with me, nor comment, she just changed the subject. I have had soooo many bladder infections and now need surgery and almost 11 months of treatment to repair the damage. I am convinced that the drying out of my sexual organs has now affected my Urethra and hence the ongoing bladder problems I am having, but of course, no-one wants to address the cause, ie, whether or not it is the Anastrozole that is doing this, but from reading other comments on the forum, I am personally convinced it is.
Just feel sooooo alone. Desperate to wee 24/7, but can hardly go, so am exhausted through lack of sleep and feeling so uncomfortable all the time, but will try to be patient and hang on until my surgery date comes through. Very hard when you have to go to work and you’re exhausted before you get there…………………… oh and by the way, I asked one of my GP’s for a certificate for a couple of extra days off during one infection, just so I could catch up on sleep before returning to work and she said “you’re pushing you’re luck” before giving me the certificate. I felt like a naughty school girl, when in all honesty, I asked out of desperation ………………..
64 posts since
8 Sep 2019
hi I think you really need to speak to your doctor and keep on at him to change to another medication there is a few to choose from and keep on at them until you are happy they have a duty of your care and it isn’t fair to make you suffer like you are like I said you can come off the tablets and have Intrevenious option every 3 months I think the vaganial drying is the through the lack of estrogen the female body doesn’t like been estrogen deprived you can buy some artificial vagainal lubrications over the counter or online from Anne summers to help yourself and husband to be intimate again .
best wishs Marie x
7 posts since
16 Dec 2019
Hi Marie
I have tried several lubricants and have been advised by my GP not to use KY, or water based ones and that the ‘Yes’ ones (supplied on prescription) are suitable. They do seem to be very good, but again, administering them is so painful, just inserting the tiny/slim capsule is almost too much to bear and leaves me in so much pain. This doesn’t solve the problem externally either …….
I will see my GP next week, my husband insists I have one last try to try and get help (just for the record, he is fabulous and so understanding), but it will literally be the last time. I just can’t take anymore fobbing off ……
Thank you Marie and best wishes to you too and I hope your intravenous option continues to work well for you.
4 posts since
17 Dec 2019
these doctors haven’t got a clue I’ve had the same problem you tell him about some problems you’re having pains and aches you’re not the only one that’s what my doctor said to me ! He is not taking these tablets for years in the end they haven’t got a clue what the pains are like I do wish you get better and hope the surgery goes well, x Gina
1476 posts since
14 Dec 2018
Oh bless you, I feel your not being listened to. I started anastrozole in July, and was told it takes a couple of months for the side effects to settle. I can totally identify with the intimate dryness, but you sound like your getting hit with everything. My onco told me if I wanted I could stop the anastrozole for 2/3 weeks and see if things improve, if they did I could swap to letrozole, but to be honest I’m more scared of letrozole!! So I’m sticking to anastrozole…..Iv also noticed the ” Teva” brand suits me better than “Accord” or “Crescent ”
Is tamoxifen an option? But what you really need is a sympathetic gp….I do hope you can get it sorted xx
7 posts since
16 Dec 2019
Thank you so much Gina & Marlyn
It’s amazing how better one feels when you have people on your side and listening to you – you almost begin to wonder if you’re going nuts and imagining things when your GP takes no notice and then that just knocks you back, which is the last thing you need.
My last lot of “Teva” Anastrozole was indeed much better than the Accord, so it just goes to show that a brand can make a difference, even if the Pharmacist tell you that it doesn’t!
I’ve decided I’m going to ask my GP to put the “Yes” moisturiser as a repeat on my prescription list and will use it every night, to try to encourage natural lubrication and hopefully, that may have an effect on my Urethra too. I’m going to discuss the variety of meds, but from looking at the forum, with the side effects of higher cholesterol levels and damaged bones, impacting on health, I really think I may give it a go to go without and hopefully feel a lot better in myself.
I see from the forum too that there are items of equipment available to gently stretch you internally. I haven’t been told about these and didn’t have a clue that such things existed. Perhaps if the ‘Yes’ works after a good period of time, I can ask the GP for advice on this too.
Thank you so much to all the ladies who have replied to my post and help me feel that I’m not alone.
Very best wishes to you all and wishing you good health for 2020.
27 posts since
6 Oct 2019
I have been reading about Seabuckthorn oil supplements being helpful for post-menopausal vaginal soreness. Here is some evidence: https://www.sciencedirect.com/science/article/pii/S0378512214002394.
It might be worth trying to alleviate these particular symptoms?
I myself am pre-menopausal and I sometimes experience soreness in that area and this is purely anecdotal, but what helps when it happens is “sealing” the area. I use Weleda Skinfood – https://www.amazon.co.uk/Weleda-Skin-Food-Rough-skin/dp/B000ORV3NC . It is primarily made of lanolin and I have found it will need reapplication in the day. Sometimes I will put it on a pantyliner so my skin will be in constant contact with it, so this might be worth a try if you are not allergic to lanolin/pantyliners. Even if it doesn’t work out, the cream is fantastic for dry skin in the winter months.
If you are practising safe sex using a condom, a silicon based lubricant might be a good alternative as lanolin/the Weleda cream should not be used with condoms (it can create holes in them). Again silicon lubricant can be put on a pantyliner and “seals” the area to reduce soreness.
7 posts since
16 Dec 2019
Thank you Marjan
I will indeed have a good look at this, thank you.
Willing to try anything!!!!
Thank you ever so much.
11 posts since
17 Nov 2019
Sorry to hear about your problems, I too have a problem with Anastrozole as per hot flushes, soaking bedsheets from night sweats aches and pains, all I can cope with but the thinning of the hair is making me so depressed.
Anyway apart from all that you mention light swimming, I don’t know how often you go but I was having terrible vaginal problems everytime I went swimming due to the chlorine in the baths and the chaffing against our tender bits. I went to the GP and was given Daktacortcream to clear up a fungal infection caused by the chlorine. It did work all cleared up back to swimming and low and behold the dry itchiness and discomfort returned. I now have a regime that works I plaster myself well my girly bits with vaseline before swimming, I take a clean flannel into the shower to ensure all the chlorine and vaseline are removed. When dry I apply the Daktacort. Over the last few weeks I have discovered I only need the vaseline to stop the chlorine destroying my good bacteria.
Sorry if this doesn’t apply to you but I would give good old vaseline a try anyway it soothes and forms a barrier against rubbing and helps to maintain your own good bacteria. Vasaline is also a good lubricant.
(no I am not on commission from Vaseline)
I also wash all my undergarments with hypersensitive wash liquid for dermatitis.
Wishing you the best for the future and hope you have a Wonderfull Christmas
27 posts since
6 Oct 2019
Hello, just wondering how things are going and whether you chose to try out any options suggested here….?
7 posts since
16 Dec 2019
Hiya
Thank you very much for coming back to me again.
I have gone onto the link you kindly provided and i’m definitely going to purchase some of the cream, as it sounds excellent and I love the fact that the ingredients are all natural, so thank you ever so much for providing the details.
In the meantime, I have been to see a new GP, who listened and didn’t judge me. It seems that I am one of the unlucky ones, who is having so many side effects from all the meds I have been taking (Anastrazole, Ad-cal & Sertraline) and although it was a dangerous thing to come off them all (especially the Sertraline) immediately, she understood and respected my reasons/decision.
It is almost 7 weeks since I stopped the meds. I have struggled mentally due to no Sertraline and hit rock bottom for a while and my mood swings are awful, but I am already feeling much better regarding my ‘body’. I have free movement, as I don’t feel like i’m seizing up and my joints feel great. I also don’t feel bloated all the time and believe i’m already losing weight and no longer feel ‘fit to burst’ constantly and therefore the ‘old me’ is coming back, with the ability of wanting and feeling like I can do so much more.
My GP has suggested I keep off the meds for a 3-4 month period and then go back to see her, as she is concerned that I am ‘high risk’ and really should be on the anti-cancer meds. In the meantime, she wants me to make notes of the difference re improvement of side effects and then if I agree to go back on them, we can look at different meds which don’t have the same side effects. She also recommended vaseline to use on my skin and sore external areas, which is a brilliant barrier to both germs and dry skin/rubbing.
Personally, I feel that feeling much better, eating healthier and being able to exercise (as i’m now pain free and supple), will make a huge difference to my chances and also the drop in my cholesterol level without the drugs (up to 5% of women don’t make it due to this alone), will be enough to see me through, but I will put posts up throughout my journey……….
Thank you to everyone for all your support and suggestions and I will buy the Weleda and report back on that too.
Happy and healthy 2020 everyone.
2 posts since
7 Jan 2020
Hi Holls,
Anastrozole – ugh!!! I totally agree with you.
I stuck it for 2 years then switched to Exemestane, which is definitely easier to cope with. I had some odd bladder issues too, sensitivity especially during hot flushes.
But yes I did find it made me feel old and achy and anxious. It’s tricky, but if you can find a medication that works for you, that has bearable side-effects, I think it’s really worth sticking with it if you can.
Very best wishes to you,
Cathy
2 posts since
7 Jan 2020
I found the combination of Hyalofemme and Sylk worked well.
One used as a moisturiser every 3 days or so, and one as a lubricant before sex.
Both are cancer safe.
Best wishes,
Cathy
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