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How long has letrozole worked for you ?

Community Champion

Re: How long has letrozole worked for you ?

Hi Ardyrankin...do you mean that the letro has got rid of your mets? Thats stupendous!

I have lver mets, but it didnt touch them when they put me back on it!

 

oh, the very best for you on Letro....id love to be on it. however Eribulin has been working well with me....have an mri next week to see if the picture fits the words!

 

hugs,

 

Moijanxx💚💚💚

Member

Re: How long has letrozole worked for you ?

I have been on Letrozole for 3 years - mets to liver - primary 1997 left breast - left mastectomy, chemo, radiation.

Just yesterday I got the good news that I was NED!

Praying that it continues to work.

Community Champion

Re: How long has letrozole worked for you ?

Hi Meat,

 

recent news has been that people do better if they stay on Letrozole for ten years now.

 

 

https://www.theguardian.com/society/2016/jun/05/breast-cancer-drugs-decade-study-aromatase-inhibitor...

 

 

I was on it after my primary and was told I could stop( after 7 years, about 6 years ago) but the bc came back a couple of years after I stopped. Could be a good idea just to ask your onc the reason for you stopping Letro?

have a chat with your bcn if you arent currently seeing your onc. She will be able to advise you.

good luck with that, Hugs,

 

Moijan💚💚💚

Community Champion

Re: How long has letrozole worked for you ?

Hi Meat

I just wanted to mention that this thread is in the secondaries part of the forum which means for us (with mets) that we are actually asking how long has Letrozole kept our mets (metastases) stable and/or reduced them rather than whether letrozole has kept BC from reoccurring. We will all understand your fears about what happens after you stop taking letrozole for treatment of primary BC and maybe there is a thread in the main section of the forum which also deals with those fears from other ladies in a similar position to you. However our fear is that when letrozole stops working for us it means we have to change to a different type of treatment to keep our mets at bay which is why this thread might not be the right one to attract enough replies to your questions.  I actually don't know the next option for you as the timescales for how long to remain on a hormone treatment have changed since I had my primary back in 2003 but, again, you may get more knowledgeable replies in the main part of the forum.

Good luck though and hopefully you will still get a few ladies helping you with your questions.

Nicky

Member

Re: How long has letrozole worked for you ?

I have been taking Letrozole for five years now, prior to that I was on Tamoxifen for five years. Breast op, chemo and radio therapy before that. Diagnosed in 2006. 

Tamoxifen caused bleeding from uterus, but Oncologist wanted me to remain on It because of high risk of cancer reoccurring.

 

i am due to stop taking the Letrozolevat the end of this month, but I am scared to do so.  I believe it has helped to keep me alive, and cancer free, all these years. Byes, my joints ache, yes, I've gained weight around the tummy, but both are small prices to pay.

 

what can I do? Are there negative side effects for remaining on Letrozole? 

 

Thank you. 

Community Champion

Re: How long has letrozole worked for you ?

Lynn
Thanks so much for posting ..it makes us letrozole ladies feel a bit more confident in the tiny pill we pop everyday .
Positive thinking xxxxx
Member

Re: How long has letrozole worked for you ?

Hi if anyone is reading.
I first responded on this thread in June 2013 to say that I had been on LETTOZOLE for 7 months and that it seemed to be doing it's job.

Just thought I would post again as I have now been on LETROZOLE for just over four years and it is still keeping me stable.

I have not had any more treatments. My joints ache, and I have put on weight around my middle....letrozole or  comfort eating???

Every time I tell anyone how well LETROZOLE is working I touch wood and say a little prayer so as not to tempt fate.

Hope anyone just starting out on Letrozole can get some inspiration from this 😀

Xx

Community Champion

Re: How long has letrozole worked for you ?

Hi Maria

The post from cmccallum05 was from 2015 so you may not get a response as I think she no longer uses the forum.  Apologies to cmccallum05 if you do, its just I havent seen anything recently.

Nicky x

Member

Re: How long has letrozole worked for you ?

how's your mom cmccallum05 ?. How are you?

Member

Re: How long has letrozole worked for you ?

rely on family for love, not doctors. Their science usually comes first, and they work hard.
Sister has bone mets after 8 years of being on tamoxifen. They might remove ovaries to put her on femara.
I stay strong by crying a lot....and spending a lot of time with my sister to the point of not working for extended periods just to be with her talking about life not her illness.
My sister will start taking medicinal cannabis for the pain soon. Will report.
Member

Re: How long has letrozole worked for you ?

Hi everyone,

 

Joining this thread not as someone on Letrozole. 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.

 

She now has pain in her right hip, but Xrays don't see anything sigifcant 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 emotionally 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!

Member

Re: How long has letrozole worked for you ?

I was on letrazole from end of chemo. 

Diagnosed primary, grade 3 stage 3 July 2006, mastectomy, axillary clearance, 15/18 nodes affected (something like that), chemo E-CMF, then rads and letrazole (from mid-Feb 2007).

Last July (2013) arm started swelling and hurting in heat, saw gp then oncologist, scans 'as a precaution' showed bone mets in spine.

In retrospect think they'd been there a couple of years maybe.  I already had pain in the same place (had early retirement from work due to RSI, shoulder and spine), knew it had got worse but stupidly, despite my mum having had the same, did not connect.

Anyway, oncologist had already said would not stop the letrazole after 5 years, since no knowing what would happen.  On new diagnosis changed to exemestane.

 

So I'd say the letrazole probably worked for 4/5 years

Member

Re: How long has letrozole worked for you ?

Thanks Vercors. My Onc told me my tumours 'chuck out' a lot of the right sort of protein to make the markers useful. I loved her technical terminology . Other people's don't. I am glad that this is the case with me as on this Iris trial she will see how I'm going after 6 weeks and put me on something else if needs be. Good I don't have to wait 3 months for a scan.
Member

Re: How long has letrozole worked for you ?

Thanks Ponsmuir, 

My onc explained that my tumour might not have the protein that they are using to monitor tumour markers. 

Member

Re: How long has letrozole worked for you ?

Glad to hear you're stable on Letrozole, Vercors. Long may it continue. My Onc has found my tumour markers to be a very reliable way of finding out how I am doing. It just shows how individual we all are, and how what works for one person may not for another.
Member

Re: How long has letrozole worked for you ?

I have been in letrozole since December 2011. I have had no progression since and signs of healing in my bone mets. My onc does not look at mytumour markers as they have never increased even when my cancer was active.
Member

Re: How long has letrozole worked for you ?

Hi,lovely ladies,thank you for your replies. Hopefully letrozole will kick in soon. I don't think I could copy with another treatment failing so soon. But I will like everyone else on here, you try to pick yourself up and get back the roller coaster .
Huge hugs and thank you,Helen xxxx
Member

Re: How long has letrozole worked for you ?

Hi Helen, 

I was diagnosed with primary and liver mets in April and have been on letrozole since beginning of August after chemo didn't work. I have never known my marker numbers other than normal or raised. My onc said letrozole takes about 8 weeks to work which is why I was offered chemo first. I still had a period for first 3 months! My markers were raised at end of chemo/beginning of letrozole but have since been 'normal'. Hope this helps

Annmarie xx

Glo
Member

Re: How long has letrozole worked for you ?

Was originally diagnosed in Aug 2010, as stage 4 from the onset.
Had a lumpectomy and then follow up scans which discovered multiple lung mets in both lungs.
Have been on letrozole ever since (virtually 3 1/2 years) and since Feb 2013 have been NED. Last scan was in Nov 2013 and again this was NED!! Next appt/scan wont be until around Aug. Long may it continue!!
Member

Re: How long has letrozole worked for you ?

Helen,
It's good to hear you have an Onc appointment coming up soon. Letrozole has stopped being as effective for me after a year and I am being put on another treatment. It will be great to find out what treatment plans are available to you.