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letrozole stopped working what now?

22 REPLIES 22
Moijan
Member

Re: letrozole stopped working what now?

Hi Carolyn,

 

just looked back on here, yes i do hope it is magical for you. You have been thru a lot

 

hugs++

 

wish it still worked for me,

 

 

Moijan

 

very odd it posted twice, must have hiccoughs!

Moijan
Member

Re: letrozole stopped working what now?

 
Carolyn52
Member

Re: letrozole stopped working what now?

Hello Moijan 

 

Thank you for bringing this thread forward as I was dx in October 2015 with mets to hips, pelvis and femur and have been taking Letrozole for three months.  I look at this tiny pill everyday and wonder how something so small could do so much. I take Adcal and now Denosumab injections monthly. 

My oncologist is lovely and assures me that after 8 weeks it starts killing off the cancer cells and so the bone heal !!! As I have no medical knowledge at all ........have to trust her !!!. 

I know there are other options as I read the boards reguarly but secretly hope that this little pill will do what it says on the tin and kill the little cancer  blighters that have set up home in my bones !!!! 

I did research Letrozole and it was formerly known as femera under  licence and it seems similar to Tamoxifen/ Arimidex which I took for five years back in 2004/2009 with the primary breast cancer. After 11 years I was devasted to be dx with secondaries but like all the ladies on this board ....take a day at a time and hope that new treatments will be brought into our lives as time goes by.

 

Carolyn xxxxxxxxxxx

Moijan
Member

Re: letrozole stopped working what now?

Hi, I was recently put back om Letrozole and it no longer works.

i anm now on Vinoralbine, following almost 2 years of capecitabine and I too am scared.

 

mine is in the bones and the Liver. I was first diagnosed in 2001, and have always tried to keep trying new projects to make me feel im progressing and achieving. Up till now I have been able to bounce back emotionally.

 

i thnk we have to hold on to the hope that new drugs will prove useful...they are working all the time to find new drugs. Let us know how you are getting on.

 

Hellywelly66
Member

Re: letrozole stopped working what now?

Hi nicky08

Thanks for your reply, yes I was going to ask for another biopsy as the first time in 2010/ 2011 it was ER+ with a score of 8 then last year biopsy took a long time then went for a FISH test and came back low ER+ with a score of 3, so I was wondering if it was ER+ or not ??? BUT  then with the C in other places would  the letrozole be keeping that under control as thankfully  not in any other areas, it really is a lot to take in, but for some reason it has started to grow again so soon after chemo, my last being may 1st 2015 then on letrozole June 2nd then 2 new lumps on Jan 2016

I am rather scared to tell you the truth,  thanks again for your reply x

nicky08
Community Champion

Re: letrozole stopped working what now?

Hi hellsbells

Sorry you are having to move on to a different treatment. Just a thought. Can you get a biopsy taken of your new lumps? Receptor status can change so purely hormone treatment may not work any longer, or as efficiently. When I had my primary in 2003 I was ER8/8, PR 8/8 and HER2- (tested retospectively in 2008). I was the same in 2008 when I had a local recurrence and bone mets were found. However when I had spread to the liver in 2012 I asked for a biopsy and although still highly hormone positive I am now HER2+ which is making a big diffenrce to the treatment I can now and do have. Worth asking about as up to 30% (depending on which study you read) of all BC can will change receptor status. The professor at The Marsden who I saw for a second opinion a couple of years ago said that all secondary BC should be re tested, providing of course a biopsy is possible,

Nicky x

Hellywelly66
Member

Re: letrozole stopped working what now?

Hi just reading and what's happened to you is happening to me now, lumpectom 2011 4 yrs tamoxifen stop working metatistic bc to sturnew collar bone lymp nodes breast went on letrozole June 2015 Jan 2016 2 new lumps appeared just getting sorted for 6 more chemo feeling really scared as last chemo may 1st 2015 but I read and I sound you I would be interested in chatting sending love x

Michelle Daly
Member

Re: letrozole stopped working what now?

Please do not worry. I did!  I was in Letrozole for a year before it stopped working, actually it was not even a year.  That was in Janury 2014 when they discovered that it has stopped working.  I have been on several diffierent treatments since then, even Chemo.  I am still here and now on a hormone injection.  I really understand the feeling that the help we receive is being ticked off, one by one, but there are so many treatments now.  If there is any Secondary Cancer Care Group you can join near you join them.  They are amazing and it you learn so much.

Mitch23
Member

Re: letrozole stopped working what now?

Hi cmccallum

 

i was diagnosed nearly three years ago with primary breast cancer and then mets to the liver one and a half years after the primary. I had a mastectomy. It seems that if you are diagnosed with the double whammy of primary and secondaries together they don't remove the primary because it's already spread. I see the same consultant every time I go. I think when you do get a doctor who doesn't seem to know your case or has a 'not so good ' bedside manner its very unsettling. How old is your mum? What hospital are you at? Have you had a second opinion? I left my local hospital and now go the Royal marsden in London. Hell of a trek from where I live but worth it. Interesting the anti-inflammatory works. 

I have been in tamoxifen (which didn't work) then letrazole which also didn't work. Then I went on capecitabine which is an oral chemo which worked fir a while then stopped! Then I went on to pacitaxol which worked for about six months then stopped then onto e/e combo which gave me pneuminitis so I had to stop that. Now on third line chemo eribulin. I'm 47 and have tolerated all off these pretty well apart from the last one which is wiping me out tiredness wise. I don't take that many painkillers. The minimum really. 

How do you stay strong ? That's a tough one. I think all the ladies on here would agree that none of us want to be in this situation but .... We are ! We have good days and bad and pray we are here to see the important things in life that matter the most to us. Hopefully our children growing up. It's the most difficult challenge we face but we also know that as mothers , it's the most difficult challenge you will face. She will be trying to be brave for you and you for her. But it sounds like she has many options left if letrazole and tamoxifen are the only drugs she's used so far.  You are more than entitled to get a second opinion even if it's so that you see the same onc every time and they have a plan ready for you. It's always good to have a plan! 

PM me if you want advice or just someone to talk too

best wishes jo x

cmccallum05
Member

Re: letrozole stopped working what now?

Hi everyone,

 

Joining this thread not as someone on Letrozole, just a daughter who needs some hope. My mom was diagnosed 3 years ago with Breast Cancer with bone mets. An incurable disease. It has been a rollercoaster of a ride, to say the least. My mom has taken Letrozole for 3 successful years, while also receiving radiation for bone pain. Recently she was switched to Tamoxifen after more bone mets caused her pain. He onc who gave her the radiation said she can have bone mets, but if they are not causing her pain, there is no need to treat. Now that her pain started again, she was taken off Letrozole as it stopped working they believe.

 

She now has pain in her right hip, but Xrays don't see anything significant that would cause it. The morphine she is on does not touch the pain, but Advil (anti-inflamatory) does. She doesn't feel it's the cancer, the docs are unsure. She is being sent for CT scan, bone scan, and MRI. More waiting. We met with a resident doc (as her normal doctor has been away for 3 months and didn't mention she would be away) and the resident said if Tamfoxien doesnt work then she will be switched to a Chemo drug "which is not easy to handle." The bedside manner of the resident was less than ideal (putting it nicely). She came into the room not really knowing about my mom's case. When originally diagnosed, they said there was no point in removing the breasts as it has spread. The resident said "why didn't you have surgery"? and kept asking what we planned on doing. I was so confused and scared. She made it sound like life was over for my mom. Maybe Im too emotional to think clearly.

 

So my questions are:

 

1. Has anyone stopped taking Letrozole/Tamxifen and started Chemo? Success?

2. Are there options after Chemo?

3. Is it normal to see several different docs that don't know the patient?

4. Do you take pain killers for the pain? How much?

5. How do you all stay so strong? My mother is a trooper, me an emotional mess!

Glo
Member

Re: letrozole stopped working what now?

I've been on it for 7 weeks and am still on 10mg dose. Only SE so far is mouth ulcers, I seem to get one for about a week, a week clear then another 1 pops up. I havent found them too bad and it does help with weight!!! I do drink 2-3 litres of water a day.
They have told me that the SE do lessn with time. Will ask for caphosol next time I'm at the hospital, thanks for that.
I have my first scan since starting this comb on 1st Dec so fingers crossed! I'm not expecting much though as I did have 5 weeks since the scan that showed progression and starting this new treatment.

Janice
Member

Re: letrozole stopped working what now?

Glo

 

I was on everolimus/exemestane for a year before it stopped working, I started on 10mg dose but after 3 months reduced to 5mg due to side effects, what dose are you on?  As you say its not funded by NHS but by the cancer fund.

 

One of my side effects was sore mouth, ask for CAPHOSOL at the hospital, it comes boxed in separate containers and two have to be mixed together, its brill, sorted me out also I used aloedent toothpaste which helped.

 

One of my other annoying side effects was water retention especially around my eyes, they looked swollen.

 

I t is in my opinion an effective treatment but I found the side effects harsh.

 

Hope it works for you.

 

Jan

stresshead
Member

Re: letrozole stopped working what now?

thank you ladies for all your reassuring posts..i;m firly new to to the 'mets' club (skin) and have been very scared...you have all helped cheer me up. x

helen44
Member

Re: letrozole stopped working what now?

Hi,
Try not to worry although that's difficult with our diagnosis. I was diagnosed Dec 2012 with primary bc and bone mets-given tamoxifen, denosumab, zoladex, no surgery. June 2014-local recurrence on sternum which was removed, , given herceptin as now Her2 positive, taken off tamoxifen and put on letrozole. Sep 2014, 2 small liver mets found, taken off letrozole and put on docetaxol chemo, still have primary tumour.
So plenty of alternative treatment out there-hoping to be sticking around for a while yet.
There's another treatment for you I am sure.
Good luck, Helen x ps I am now 46.
edwina64
Member

Re: letrozole stopped working what now?

Thanks for the info best wishes to you it helps to know options x

edwina64
Member

Re: letrozole stopped working what now?

Hi Belinda 12 years and counting wow so inspiring thanks and very best wishes to you, 

edwina64
Member

Re: letrozole stopped working what now?

Hi Tink thanks its is reassuring to find others in the same situation getting on well it's scary having 2ndary bc!

edwina64
Member

Re: letrozole stopped working what now?

Thanks Mrs Blue 2006 wow that's quite some time ago gives me reassurance thank you so much x

mrsblue
Member

Re: letrozole stopped working what now?

Hi Edwina,

I'm another who still has primary breast tumour (bc/bone mets diagnosed 2006).  I had letrozole for almost 3 years then it stopped working... then several other treatments (chemo and hormonals) one after the other... then letrozole again!! It did work for a few months 2nd time around.  Now I'm on my 2nd time around with capecitabine (tablet chemo).  I do have liver mets now, but most of the time they have been well controlled by treatments.

So I hope you will be reassured that there are other treatments.   Oh and I'm just 65 🙂

Tinkerbelle
Member

Re: letrozole stopped working what now?

Hi Edwina64,

 

It does throw you when a treatment stops working and you imagine all sorts of things.  I originally had 'only' bone mets and was given Aromasin which didn't work.  I had chemotherapy and am now on Tamoxifen. 

 

If the Tamoxifen stops working then there are still other options so one treatment not working doesn't mean the beginning of the end just the beginning of a new treatments which may keep you stable for years as they have for Belinda (she's a star).

 

I still have my primary as they won't take it out but it's only tiny.

 

Good luck with your new treatment.

 

Tink x

belinda
Member

Re: letrozole stopped working what now?

Hi, I was diagnosed with bc and bone mets. Still have my primary even now. I have had various hormonal treatments and chemo since my diagnosis and I'm now about to enter my 12th year of living with this. Best Wishes.
Glo
Member

Re: letrozole stopped working what now?

I'm 61, mets to lungs at initial diagnosis in sept 2010, letrozole got me to NED, scan in Sept 2014 found progression, 1 lung and 1 lesion in liver. Started everolimus and exemestane in October, which seems to be the favoured route at the mo. It's supposed to very effective if it works but does has SE, my main one being mouth ulcers.
This drug is not approved by NICE but at the moment available thru the CDF, but is up for review on Dec 15th.
If your onc thinks this is suitable for you, i believe you would be able to stay on it even if the CDF remove it from their list.
Good luck Glo

edwina64
Member

letrozole stopped working what now?

Hi all I am 64 and have breast cancer with bone mets.  No op just letrozole for a year. Now have further progression and seeing onc in a couple of weeks to discuss what next. Anyone had this sort of thing? Worried this is the beginning of the end! Had a large 12cm tumor but shrunk to 3.5 cm now but they won't take it out anyone else had this? 

Thanks x