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LETROZOLE HORMONE THERAPY TREATMENT

13 REPLIES 13
Amber_D
Member

Re: LETROZOLE HORMONE THERAPY TREATMENT

Lily, thanks for the info going to try a smaller local chemist x
CassieB
Member

Re: LETROZOLE HORMONE THERAPY TREATMENT

Re No of items on prescription

 

I've been having one of my prescriptions (not cancer related) for at least 10 years and once my condition was stablised was given 3 months' supply at a time. Last year I was told I should only have one months' supply at a time as the chemist gets paid every time it dispenses so insists on single month prescriptions. Fortunately my doctor prescribed two months' worth and, so far, I've been getting them. I currently take 4 tablets for various problems and the thought of having to visit Boots 4 times in a month to collect different tablets is really beyond the pale. I may be retired but I do have a life to live!

 

I am seriously considering changing to a smaller chemist as Boots is becoming more and more of a problem with its systems.

Lily200
Member

Re: LETROZOLE HORMONE THERAPY TREATMENT

Hi AmberD, I am sitting looking at a box of Sandoz brand letrozole I collected yesterday. Like you my pharmacy tried to change brands and I had new side effects very quickly and went back to see him and said I only want this brand (the original femara brand was exactly the same make up as Sandoz, which he kindly checked for me, the last time I had to change brands. This was when femara vanished). They all have a number of suppliers and he had to try 5 before he found one with this brand for me. He now stocks them ahead of me coming in. I would say find a local independent chemist as they seem to be willing to listen and help. I have no side effects at all on this brand but on the others, within 2 days of changing tablets had terrible bone pain, acid reflux and was taking indigetion remedies every night to be able to lie down. Other people on here have had heart issues from the substances some tablets have in their coating. The active ingredient we want is always the same. On another matter, I have been getting 2 months supply for years and suddenly have been told I can only have 28 tablets per prescription. Has anyone else had this? I am really annoyed as its not even a month and I have to be organised and on the ball  or I will run out. Good luck and keep trying to get your brand Amber, they are out there - Lily x

tezz
Member

Re: LETROZOLE HORMONE THERAPY TREATMENT

Hi, I am new to the forum. I finished my treatment Aug 2014. I started on letrazole and due to the joint pain it was changed to exemestane. I am just as bad. Like you, I feel like an old lady, (59) I can't do lots of things I use to and feel so frustrated. I have just had a isotope bone scan because I was so worried about the pain. It certainly sounds as if we have to cope with it. Kind regards tezz

Amber_D
Member

Re: LETROZOLE HORMONE THERAPY TREATMENT

I've been taking Letrozole for eighteen months now, once the side effects settled its been ok. When I picked up my last prescription the brand had changed. I tried them but the side effects were horrendous. Boots pharmacy changed them for my original brand which is Sandoz. I went to get my prescription today and they've told me they can't get Sandoz from their suppliers anymore. Has anyone had this problem? Is it down to cost? I really don't want to go to square one with s/e as I have to take these for 10yrs.
eileen728
Member

Re: LETROZOLE HORMONE THERAPY TREATMENT

Hi Flopsie,
I have been a bit achey - strangely mostly my left arm which is not the side of the BC. But lots of people on this forum have reported that the sde effects differ depending on which brand you are given - I seem to be worse on Teva than on cipra - might be worth talking to GP about experimenting with different brands. xx
Flopsie
Member

Re: LETROZOLE HORMONE THERAPY TREATMENT

Hi,

I am new to this forum, but I have been reading with interest about Letrozole. I am 52 years old. Finished my treatment in November last year. I was given Letrozole. I am suffering really badly with joint pain. It is so bad that I take about an hour in the morning to get going. Coming down the stairs is really bad.I feel I have also gained weight. I was a keen runner before I was diagnosed,but finding it really difffiuct getting back to my running.Morning running is definalety out, this is when I preferr to run. Anybody out there in the same boat ?

catokitty
Member

Re: LETROZOLE HORMONE THERAPY TREATMENT

I have also been on Letrozole for a couple of months. I did have some hot flushes initially and joint pains started at about four weeks but they have worn off and I am now fine. I am 60 and had a natural menopause when I was 52. I was really nervous when I stated letrozole and the side effects list made my hair stand on end but it has been fine.

eileen728
Member

Re: LETROZOLE HORMONE THERAPY TREATMENT

If it helps - I have been taking letrozole for 2 months now and the only thing I have noticed is the occasional hot flush but I still had those sometimes post-menopausal anyway. I don't think side effects are inevitable - even the most common ones are only supposed to affect 1 in 10 people xx
waveylocks
Member

Re: LETROZOLE HORMONE THERAPY TREATMENT

Hi I have been told I am extremely strong oestrogen positive so Letrozole is recommened as iam post menopause. The grading was 8 oestrogen positive so I feel I will have to bite the bullet. I pray I don't get terrible side effects. I have a friend on the stuff & she has put weight on feels tired & has hot flushes after taking it for two years.....it could be life saving or me though.... Xxxx
lolly73
Member

Re: LETROZOLE HORMONE THERAPY TREATMENT

All these treatments affect us all differently. Some people have more side effects and for some people the benefit in taking them is huge, even though we may not realise it at the time.

 

I took hormone treatment for what was then the standard 5 years. One year after stopping, mammo showed cancer back again! 100% hormone positive again.

 

I wish I had never come off these tablets and then almost certainly the cancer would have stayed away. They clearly do their job for me, so this time its 10 years or more on them hopefully!

Annie62
Member

Re: LETROZOLE HORMONE THERAPY TREATMENT

I've been on Letrozole for just over a year after having a single mastectomy, chemotherapy and radiotherapy.  It's a bit depressing to hear that apparently this drug is of little benefit as I was under the impression that it was the recommended treatment for oestrogen-positive breast cancers.

 

BTW, I've had virtually no side-effects, certainly not weight gain.  If the negatives of any treatment outweigh the positives then of course it's up to the individual to decide whether to carry on with it.

Bondgirl
Member

Re: LETROZOLE HORMONE THERAPY TREATMENT

Hi Bluemoon
My cancer was stage 2 invasive lobular and ducal with node involvement, had surgery, chemo, more surgery to remove all nodes and to see if they could get clear margins, the. 4 weeks radiotherapy. The second surgery revealed clear margins and the remaining nodes were clear (huge relief). Then I met with the oncologist who said I was post menopausal and would need hormone therapy and said it would stop the cancer returning he said it would give me a 20 percent benefit so I thought this is a no brainier. Started taking the ananstrozole on December 1 2014 but by day 5 the side effects were horrendous but continued by day 10 I was onto the helpline in desperation and feeling very very low. I was reading threads on here and someone mentioned the NHS Predict Tool so I put all my info in and it said the hormone therapy would only increase my benefit by 1.3 percent over 5 years and 4.3 over 10 years. I arranged to see my oncologist on day 15 and he fessed up that the 20 percent was 20 percent of the remaining 6 percent (the tool said I was 94 percent not going to get recurrence after all the treatment I had had so far) so I told him I did not want to take anymore he said leave it till Jan 19 2015. When I went back I felt 100 percent better said again I did not want to take it he wants to see me on 20 April but I have since seen my surgeon and told him, his response was it wasn't enough of a benefit and go enjoy my life with quality.

I think we need to be able to have more info about the hormone therapy and feel we are able to question the professionals.

glad to hear someone else has done this
buemoon13
Member

LETROZOLE HORMONE THERAPY TREATMENT

I was diagnosed with intermediate DCIS last July, had right sided mastectomy and strattice reconstruction.  Also had lymph nodes removed and fortunately I was lucky as there was no spread of cancer.    My pathology results after mastectomy showed two small invasive tumours.    I was therefore put straight onto letrozole.   The side effects from this drug were quite bad, I put a stone and a half on in weight, had headaches, felt sick, very painful legs on waking in the morning and my cholesterol also increased.   I decided to stop this medication after 4 months, 31 January 2015 and feel so much better.

 

I was very concerned and felt really guilty about not taking medication which is to prevent cancer returning.   I was therefore added to an MDT discussion meeting between oncologists, nurses and radiologists.   I was informed that after my individual case was discussed that the Letrozole would only be of 1% benefit over 10 years.   I am so so reliev ed that I do not have to continue taking a drug that made me feel so bad.

 

I do hope that this inspires anyone else in a similar situation to question the decision for a drug, which in my case was completely unnecessary and very expensive to prescribe over 5 years.   Hence saving the NHS thousands!

 

I understand and sympthamise with everyone that has to take hormone therapies because they are obviously given out for the right reason and would not stop the medication until discussion with consultant, breast care nurse and GP.