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