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After five years of letrozole, what next?

17 REPLIES 17

Re: After five years of letrozole, what next?

Hi, sandra4,

I tried to reply to your message,ages ago, but no luck in making the technology work! Glad you are doing well.

Re: After five years of letrozole, what next?

Hi Ladies,
Was really interested to read your first post redsilver, because l was diagnosed Feb 2010 with 16/18 nodes. l have heard of ladies going on Tamoxifen after Letrozole. I asked my surgeon this week if l would be going on Tamoxifen after 5 years, he told me l would probably stay on Letrozole for 7 years. He said they are doing lots of trials with regards to Letrozole then Tamoxifen, but our hospital prefer to keep to the Letrozole, but things may change in the next few years! Interesting to hear other ladies treatments.
Good Luck to Everyone
Sandra xxx

Re: After five years of letrozole, what next?

Just updating on the result of the meeting with my consultant.

She was very understanding and has put me onto a three year course of Tamoxifen to start when the Letrozole course finishes. Really pleased as it feels like having a parachute and not just jumping off the cliff in freefall and keeping my fingers crossed!

So I have been signed off from consultants care and have officially been declared a five year success story.

I hope there is good news for others too and wish everyone good health and happiness.

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Re: After five years of letrozole, what next?

hi , since onc said i,m in the high bracket for it coming back i've been finding it hard to cope the last week. i know theres others in a worse situation but i cant stop crying at mo.im so knackered and emotional need to get last(9th) chemo done on 20th tnen i might feel well again..lucky you i'm so pleased for you . you give us all hope.xx rach

Re: After five years of letrozole, what next?

Hi rach37,
I was 8/8 hormone positive but her negative and have been fine on Femara. Probably had side effects but went straight onto it from chemo so don't really know, after so long, what 'normal' is any more. However, in my case I was happy to take anything they reccomended and am pleased to say I'm still here and enjoying life. It will be the five year anniversary of diagnosis in February. I can honestly say that for the first year I couldn't make any plans beyond a few months as I was never really sure I would be around or healthy past that, and as for talking about long term events forget it.

Gradually life became the new 'normal'. I gave up teaching and took my pension and a year later my husband did the same, although he now works as a consultant part time. I love my new life and as I said in the first post I feel a bit fragile all over again at the thought of giving up my Femara comfort blanket. I can't believe I'll be lucky enough to never have to face the cancer coming back.

Hope you are doing well on chemo, keep strong.

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Re: After five years of letrozole, what next?

hi red silver, 8 out 18 nodes positive ,3 were small tumors that had grown whilst having 6 fec.my cancer is grade 2 ductal extreemly hormone sensitive but her negative.i'm 38yrs. so started 3 taxotere chemos before rads and hormone injections.was gutted got to have 3 more chemos but getting on with it . how r u ?

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Re: After five years of letrozole, what next?

Hello Polly, I can answer one of your questions, Femara & Letrozole
are the same drug and they are in the same family as Arimidex,which is "Aromatase Inhibitors". As regards the cost, they are the same price as each other, my GP was moaning how dear they were when I was on them, so that suggests that the practice pays for them. I`m now living in Spain and recently paid privately to have tumour marker blood tests done, 220 euros, and I came out with a really low score, at the end of my 5yrs, I`ll have the tests done again and that will
influence me as to whether or not to take more medication. I`d previously asked my onc in UK for these tests but he`d refused, if I`d known how relieved I`d be, I would have had them done sooner.
BTW the 220eus included a Ultra-sound of my remaining boob and both armpits, all clear in every way.
Good luck with whatever you decide to ask for, love Mags xx

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Re: After five years of letrozole, what next?

Sorry I meant Letrozole, not Femara.

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Re: After five years of letrozole, what next?

Hello everyone - this is my first post, so may be posting in wrong place! I have been on Arimidex for almost five years, and I am also worried about coming off it. I perfectly understand when you say it "feels like a comfort blanket" and that the cells are just waiting for the drugs to stop before they sneak back in. I mentioned to my gp that I would like to continue the drug, and he said I should write to my oncologist. Does anyone know who would pay for the drug, gp or hospital? I felt I was being fobbed off really, although he seemed synmpathetic. Also, what is Femara? And why are some people given that instead of Arimidex? I take it they are both post-menopausal drugs. Sorry to ramble on.

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Re: After five years of letrozole, what next?

Hello, I was given Letrozole after chemo, MX,rads etc, the side efects were intensifying instead of subsiding so my onc put me on Tamoxifen (feel fantastic now). It was the surgeon who`d started me on the Letrozole initially but the onc said he`d have given me Tamoxifen from the outset, I`m 58 so definitely post-menopause yet I was never asked at my diagnosis how long since last period. So in my opinion it`s just the preference of the individual doctor. The decision to put me on Tamoxifen suits me to the ground, we now live in Spain so I pay for my medicines, Tamoxifen are 7 euros, Letrozole are 168eus!
Good luck on the treatment, love Mags xx

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Re: After five years of letrozole, what next?

Hi

I was told that Femera(Letrozole) is best for post menopause and Tamoxifen for pre menopause.

Andie

Re: After five years of letrozole, what next?

Hi there being a bit thick about this as its all new to me. I have had lobular cancer grade 2 and a mastectomy and node clearance, I have had chemo and radiotherapy and the onc is starting me on Femara, all blood tests say I am post menopausal although I have had no symptoms other than no periods. They stopped almost immediately I was diagnosed. My question is this is femara the best one to take rather than tamoxifen or is it usually given after tamoxifen? and are there side effects I should prepare for would you say? thank you for helping with this, lots of love to you all T xx

Re: After five years of letrozole, what next?

I took letrozole for 12 months but it did'nt work for me so I've been switched to Tamoxifen as someone else commented it works differently so see how I do with that.

Jan

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Re: After five years of letrozole, what next?

Dear Redsilver

I will be interested to hear how you get with regards to asking for tamoxifen. I've also had grade 2 lobular with cancer in 15 lymph nodes. I've had five years of tamoxifen and have just started letrozole. I have been told I will be on this for 4 years.

I take it you were post menopausal when you were diagnosed hence you when straight on letrozole. I was pre menopausal hence tamoxifen. Letrozole is supposed to be better at keeping BC at bay even more than tamoxifen. I'm not sure I understand why you would want to take tamoxifen. Would another cancer drug similar to letrozole not be more appropriate if you are already post menopausal?

I hope things go well for you.

Jeannie

Re: After five years of letrozole, what next?

Thanks Lemongrove, I'll ask about the possibility of Tamoxifen at my next appointment.

Rach37 how did your appointment go? I hope the results were not too scary, good luck and best wishes.

Re: After five years of letrozole, what next?

My understanding is that it is still possible to have Tamoxifen after Letrozole, because they work in quite different ways. Letrozole helps stop oestrogen production, whereas Tamoxifen does not stop oestrogen production - rather it prevents a tumour from being able to utilise oestrogen.
I assume because you have been on Letrozole you are post menopausal, and that's why your Doctors prescribed Letrozole first, rather than Tamoxifen. But there is no reason why you shouldn't now have Tamoxifen.

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Re: After five years of letrozole, what next?

hi, i'm 37yrs.i have grade 2 ductal' extremeley hormone sensitive. i had lumpectomy in may and 5 nodes removed, all 5 were positive.they told me it may have gone through all my nodes. have just had 18wks of fec chemo followed by axillary clearence 2 wks ago. im going to hallamshire sheffield tomorrow to hear how many nodes were positive and when i will start hormone therepy and rads at western park hosp.

After five years of letrozole, what next?

At my last hospital visit I was told that my five years of Letrozole are nearly up and I'm not so sure that I like the idea. I was grade 2 lobular with 10/11 nodes positive and am really pleased to still be here!

I started Letrozole as soon as chemo had finished and I suppose it has become a bit of a comfort blanket. However, with so many positive nodes I can't help feeling that those cancer cells are just waiting for the first opportunity to pounce again.