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letrozole

16 REPLIES 16
Meri
Member

Re: letrozole

I just recently had Tamoxifen stopped due to side effects making me so ill.

 

I know Letrozole will be next option, though got six week break as having Radiotherapy at moment.

 

But I found the NHS tool called NHS PREDICT useful, my oncologist used it and showed me

 

Just go to the website put in your diagnosis etc and it will show you how much or how little difference hormone drugs make to survival in 5  and 10 years.

 

Mine is only 2% improvement so honestly cannot see point of having less quality of life via side effects.

 

Its one bit of info to have to discuss with doctors.

Catherine Ann
Member

Re: letrozole

I too have been on Letrazole for 12months. I am experiencing blurred vision mainly in my right eye? Just wondered if it is connected to the drug.  I have also had an MRI scan recently for my bones, due to pains in my joints and bones, but thankfully this seems alright. These pains cause a flare up of arthritis sometimes causing severe pain and quite debilitating. Thankfully it does clear eventually.  I am alive and I am very grateful for my care, but just wondered if anyone else have these problems.  I am 70 years old this year, if that has any relevance. 

Corrina
Member

Re: letrozole

Hi All I was given  Letraloze accord brand by the hospital but now have been given Manx brand. Never noticed anything different . Been on letraloze for nerly 3months .Ive been ok with it so far . I take vit D3 Vit C a multi vit, grapeseed extract, and a probiotic. I also make myself  tumeric tea...ont know if they help but makes me feel Im doing something good for myself. also started to walk more. I do worry about the long term effect it may have on my bones Hair and skin though. Havent had results of my Dexa scan yet. hoping it is ok xx

Carolyn52
Member

Re: letrozole

Hiya
I have accord brand and find them the best of the bunch ...I had several others ..cipra was dreadful ..gave me blurred vision and huge hair loss but of course everyone is different ....
On the other sites a lot of ladies insist on " sandoz " as its made by the same company as the original femera .
Hope this helps
Xxxx
anthea.bloomer
Member

Re: letrozole

I began taking Letrozole 12mths ago...not sure which brand,not that informed at the the start. They did give me joint pain however and my lovely pharmacist swithed me to one produced by SUN pharmacuticals in the Netherlands. I guess these were more expensive because the have now 'been removed' They were replaced with accord about 2mths ago and I experienced extreme dizziness and blurred vision. Dr's put it down to a virus!!!!!! The dizziness seems to be subsiding but not good when I practice Yoga or put my head back in the shower to wash my hair. I have to hold onto the walls. Had eyes tested, Osteopath says not a neck problem' blood pressure under control so I am now thinking it could be ACCORD. Anyone else have these SE's Didn't realise until I read your posts that they were 'cheap' 

poppyj
Member

Re: letrozole

Whew! Just managed to re-register so hope this works. Thank you all for your replies - just an update. Joint pain was so much worse so rang my Breastcare nurse. Advised me to discontinue Letrozole and Adcal, and monitor effect for 1 week. She will ring me on Monday and we'll re-assess the situation. I can't report a miracle recovery so far, BUT the pain doesn't seem quite so bad. Not sure if that's just wishful thinking but at least I can get downstairs without shuffling on my bottom! I asked her about Omega 3 etc, and she advised against it - not sure whether it's linked to the typs of Cancer, but when first diagnosed in February 2014 my specialist took me off the Evening Primrose I'd been taking for the last 35+ years (I'm also post-menaupause).

Best wishes to all, PoppyJ 

familytree
Member

Re: letrozole

Poppy check out the evening primrose as I thought that was a suppliment for woman in the change so may have hormonal properties? x

familytree
Member

Re: letrozole

This is exactly what happend to me! Given Letrozole accord from the hospital then got a dfferent brand the month later so refused to take them. got another prescription (because the chemist can't give you it back?!) found a chemist that supplied the same... for a month! then said they couldn't get them from their wholesalers so I called accord direct and they said they are low on supply but to tell the chemist to make it a special order. The chemist contacted my Dr who has made it a special prescription. Like we are not going through enough without messing with different brands! Grrr. 

On the suppliment front I take Vit D3 calcium (after dexa scan showed osteoperosis) and they prescribed that bone builder but it has terrible reports on it not being good bone and blocking the bodies own repair system on bone so I thought I would give that a miss!... until this week when it was on TV saying it helped stop bc travelling to the bone. I am completey lost as to what to do now 😞 I take Turmeric (wonder herb!) Spirulina and Chlorella. How times have changed.. never took an asprin unless I was desperate! lol

I just need to know what foods to avoid that may contain hormones. If I am taking pills to block it then surely it's important? .. so many questions 🙂 x

Lorna x

 

tweeks123
Member

Re: letrozole

Morning Poppyj
thats what I like about this site always someone to chat to at the other end we are all going through the same kind a thing.I dint know what I would have done without this site its really helped me a lot take care x

christine x
poppyj
Member

Re: letrozole

Thank you for your helpful replies - I tried to post again last night but can't find it on the board now. Must be doing something wrong but your supportive comments mean a lot to me as I have no-one else to "lean on" at this time.

Take care, poppyj X

tweeks123
Member

Re: letrozole

Poppyj I dont think taking evening primrose and omega will be a problem im taking vit D and codliver oil and the calcium tablets take care x

christine x
poppyj
Member

Re: letrozole

Thanks Christine - will try anything to get rid of these terrible pains.

 

poppyj

tweeks123
Member

Re: letrozole

Hi poppyj
my joints are bad with Letrozole im on accord second month they give me different..but only took 5 days and bad SE..so got another script off doctor and got accord after 5 different chemist managed to find accord..so im sticking with the devil I know.. yes thinning hair sickly feeling headaches joint pain..I hate to take them but havt to do ...try stick to oe make of Letrozole take care x

christine x
poppyj
Member

Re: letrozole

Thank you June. I spoke to one of your team today who was very helpful, and will try to see my GP on Monday re: changing tablets and associated issues. May I just say all your team are very supportive.

Regards, Poppyj

June_BCC
Member

Re: letrozole

Hello Poppyj

 

Welcome to the forums, this must be a very difficult time for you.  As well as the support you will receive on the forums we also have a free helpline where you can talk things through with a member of staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

With Best wishes

June, moderator

poppyj
Member

Re: letrozole

I have been on Letrozole (and Adcal) since diagnosis in February 2014. Had mastectomy and immediate L D flap reconstruction in June 2014. Since then I've had side effects (flushes, thinning hair, split nails) and am prepared to put up with them. HOWEVER joint pains have reached the point where I have problems walking some days. Have even had injections in me knees, but nothing really helps. Has anyone had this problem, and been switched to a different make of Letrozole? I've had Accord and Cipla so far, but pharmacist has suggested Femara but GP would have to specify this make. Also, is it safe to take Omega and Evening Primrose with Letrozole? Would be grateful for your feedback. Thanks.

tweeks123
Member

letrozole

Hi Im jist wondering if Im on the cheap letrozole tablets (accord).. and Im just getting used to the SE. Ihope they do t change my brand on the second packet the packet ive got was given at the hospital chemist when I went back for my results after my opp..Im reading lots of different things o here all about differe t brands etc..does everyone who takes these tablets stay on the same brand once been prescribed them ?? X