How long has letrozole worked for you ?

Living with secondary breast cancer Treatments and medical issues
41

Hope all goes well for you gail5, I have been on it a year and so far it is working :slight_smile:

42

Thanks Milo, thatā€™s encouraging.

43

I was on Letrozole for 6 months when I started to get really bad backache - I spoke to my surgeon and he has now put on Anastrozole which is not as strong. I have only been on it for 10 days and feel amazing, hopefully this will continue as the aches and pains of Letrozole were just getting worse.

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Hello All. Beryl - I was dx in 2006 and now have exactly the same mets as you. Am due for re-scans etc in June to check that the Letrozole is working. I was on Letrozole for 5 years, and it is only since I was advised to stop taking it that the mets have appeared. I was lucky in that the s/es were not too troublesome. So the good news is Letrole does work, and can do so for a long time! Hereā€™s hoping that it works second time around, and that it works as well for you all as it did foe me.

45

kitten-mad - hope you continue to feel better on Anastrozole.
Claire - good luck with the scans next month.

46

Thanks Gail,
Hope it works for you too!
The s/es do lessen over time, but that doesnā€™t mean the Letrozole has stopped working.
On the downside, I developed pitiyrasis which is a skin condition most commonly found in teenage boysā€¦
Donā€™t we just love hormones?!

47

Well Iā€™m not quite abandoning letrozole but having built up fluid on right pleura and being admitted to hospital with breathing problems, onc thinks it might take too long to work so we agreed to go on weekly taxol. Itā€™s a pity as would have liked a good break from chemo. Unusually she is happy to combine the two.

48

Sorry to hear you had a setback before the letrozole had time to kick in Gail, but if your onc is keeping you on it, presumably she is reasonably confident that you will benefit in time?

49

Claire I hope so.

50

I have been on LETROZOLE for seven months. I was Dx Oct 12. Lobular Ca in both breasts also bone mets and some peritoneal shadows.
i had a CT scan a couple of weeks ago and BCN rang with initial results since I do not have an Onc appt for about 4 weeks.
there has been -no new spread- The bone mets are either the same as before or smallerā€¦and the peritoneal infiltration is -ā€œalmost completely resolvedā€

needless to say I am happy. Side effects are stiffness in my legs and feetā€¦and other joints. ā€¦especially after sitting for a while and when i get up in the morning. I try to walk every day and am considering taking joint supplementsā€¦I also have Zometa and Adcalā€¦Onc said supplements wouldnā€™t make any difference but I am still tempted to try them. No S E bad enough to make me consider stopping Letrozoe Even Tho Onc says there may be others we could try.

51

Great news lynnq

52

Hi girls. Tamoxifen did not work for me either as I developed a recurrence. After treatment for that , I was put on Arimidex, but as I had severe side effects, only took it for 2 years. Then developed secondaries in 2012. Been on Letrozole since April 2012. Normal side effects, weight gain, hair loss (quite a lot), night sweats, very achy joints etc. BUT the latest CT scan showed that the bone mets are stable, not spreading and look as though they are calcifying, i.e. not spread further through the bones. I am also on Denosumab. So this is good news all round, and despite the SE I am going to persevere with the Letrozole.

53

Hi,lovely ladies,I was diagnosed in June primary and bone mets together. I was on tamoxifen for 6month but tumour markers went up by 100 every month so I was taken off that. Iā€™m now on letrazole &zolodex and have been for 6 weeks. Iā€™m having increased pain in mets and the lump in my breast has grown in the last two weeks to the stage I can see it poking out. Just got blood results today which has shown TM up again by 170! Is this normal,tumour flare or is this another treatment failing ? Really worried,I see onc next Monday,Helen x

54

Hi everyone,

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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.

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She now has pain in her right hip, but Xrays donā€™t see anything sigifcant that would cause it. The Morphine she is on does not touch the pain, but Advil (anti-inflamatory) does. She doesnā€™t feel itā€™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 didnā€™t mention she would be away) and the resident said if Tamfoxien doesnt work then she will be switched to a Chemo drug ā€œwhich is not easy to handle.ā€ The bedside manner of the resident was less than ideal (putting it nicely). She came into the room not really knowing about my momā€™s case. When originally diagnosed, they said there was no point in removing the breasts as it has spread. The resident said ā€œwhy didnā€™t you have surgeryā€? 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.

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So my questions are:

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  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 donā€™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!

55

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

56

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.

57

Hi Ardyrankinā€¦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!

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

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hugs,

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Moijanxx???

58

Meatā€¦hope you managed to chat to your onc?

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how did it go?

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i hope we havent put you offā€¦!

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i Ā see you havent returned to the forumā€¦do let us know how things go? We wont mind which section of the forum you decide to post on, it would be lovely to hear how things are going for youxx

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hugs,

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Moijan???

59

Good to read your comments about letrozole working well, just started on it only complaint so far is achy joints and a bit of weight gain.

Read so many negative things about it on other sites so was great to read something positive.

Hoping it works well for me

Lily x

60

Previous comment referred to a post from Lynnq

Lily