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Lobular Breast Cancer: Let's share and support each other
Breast Cancer | Last Active: Sep 23 5:01pm | Replies (556)Comment receiving replies
Has anyone with ILC stage 1B stopped Letrozole?
Have they taken anther AI or stopped ?
I am At 2 1/4 years point of Letrozole for a 3 months vacation.
What are the repercussions of stopping at age 77? At 3 years point point since lumpectomy.
Side effects made quality of life not happy, to say the least.
Increased arrhythmias, total exhaustion, leg pain, burning legs at night, developed neuropathy and Achilles Tendonitis last month of Letrozole.
Bone on bone arthritis in both knees and developed muscle weakness and hard to walk.
Only choice left to take is Exemestane .
Do not want carpal tunnel syndrome and lymphedema of legs or arms. I already have breast lymphedema and these these are known
side effects of Exemestane.
Do not want to end up in a wheelchair and continue to take an AI.
Maybe I am just looking at the negatives.
Have Aromatase Inhibitors Muscle and Skelatal Syndrome..
Replies to "Has anyone with ILC stage 1B stopped Letrozole? Have they taken anther AI or stopped ?..."
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@timely So sorry to hear about those side effects. I do think the docs should get together at the start and tell us more about our choices. I feel that "You'll have to take a pill for 5 years" is thrown out and no one is prepared for the side effects of losing estrogen. Dryness is one thing but what you are describing is something else. I too am ILC stage 1b. lumpectomy and 15 days of radiation. I'm on anastrozole and, knock on wood, so far have no terrible side effects. A friend of mine did complain about letrozole and was switched to anastrozole with better results. We are all different and our bodies react differently to these meds. I am leery of any of the prognostications that might be made on a mixed base of patients, ductal and lobular. I would like to see lobular only data. This cancer is diffuse. The cells scatter and travel and can show up undetected in the lining of our stomachs, brains, ureters. Creepy. And it does not respond well to chemo. I too am in my late 70s and I don't want to go out, fighting one of those dreadful situations. One of the articles I read said that Mammoprint, Oncotype do not apply to lobular. ??? And yes, I too would like to hear more about lobular on this thread which, thank goodness, is dedicated to it.