Lobular Breast Cancer: Let's share and support each other

@breeb Here's a study on Letrozole intermittent dosing.
https://pmc.ncbi.nlm.nih.gov/articles/PMC4740217/

@jmh22

Thank you for your info. Could you give references for the Letrozole studies so that i can show them to my oncologist. I’m prescribed daily Letrozole which complicates my osteoporosis and have to get Zoledronic injections.

thank you, I have been considering when I have a moment to seek other opinions. I tried a few yrs ago, but the other reputable Cancer Ctr. that another friend sees, could not accomodate me as a new patient. They were are stretched thin...

@rococo325 I see a very highly-rated oncologist at the (also highly-rated!) Fred Hutchinson cancer center here in Washington state & he prescribed 10 mg (half-dose) of Tamoxifen for me (stage 1a ILC). He is following the clinical trials currently being held on low-dose Tamoxifen & believes that research is pointing toward successful results with lower-dose Tamoxifen for early-stage breast cancer. It might be worth your while to seek another opinion.

I sing the praises of Lisa Moore's Brick House Bones to all my friends, relatives, and to my legion of young health care providers.

@wews I due to some lessening bone density in hips & spine was just advised to stop Anastrozole and am prescribed 20Mg a day Tamoxifen by the BC PA. who just just answers my question about Tamox. w/ --there is no data on lowering the dosage & it is the same formula for premen. women. There is a study done in August '25 at Dana Farber and it states the risk for post menopausal women to get Uterine , Endometrial cancer is higher. and that the drug does create create endometrial cell growth. So I am taking the best possible calcium supplent by Jarrow that is formulated to absorb more successfully and going to try this specialist's youtubes? on Bone bldg. called Brickhouse Bones by Lisa Moore.and get my Zomeda infusion this year.
I have 3 women in my immediate family who have had hysterectomies from fibrods.

I have found medication management to be more difficult than active treatment was. I was on Anastrozole and tolerate fine for about a month - just little teary. After about a month I started going sideways - paranoia, the "ugly" cry for no reason, nervousness etc. I am now on Letrozole and tolerating. I was also put on Verenzio (sp) and it came back up within 30 seconds. Next Kisqali which caused extreme headaches with vomiting. I am fortunate that I have a wonderful care team that will pivot to try to make adjustments. Wishing you all the easiest journey possible!!

I don't know what med your taking but studies show that AIs and cdk4/6 inhibitors can have dose reductions without affecting efficacy. AIs like letrozole can be changed to every other day. I take both letrozole and Kisqali. No problems with letrozole, but the cdk4/6 inhibitor Kisqali gave me neutropenia severe enough to reduce dose from 600mg to 400mg and finally 200mg where I still have reduced neutrophils but manageable. I wouldn't dose adjust any med without discussing with your onc but it is doable and certainly better than doing without.

I agree we have a specific subset of breast cancer. I hear the medical world say do a monthly screening for lumps, but our lobular cancer doesn't exhibit as lumps because lobular cancer doesn't grow like that. I have learned that I should check monthly for changes. I didn't go to medical school, so I need to know what to look for.
I've learned that the medications are prescribed as a one-size fits-all dosage, and not designed for our individual needs. When we have side effects, there's no adjustment of dosage. It's like it's our fault we have side effects, which is sort of accurate, but a dosage that is appropriate for each individual would reduce or eliminate them, or at least make side effects manageable. I've been told 50% of breast cancer victims refuse to take mediation, I believe it's due to the side effects with no consideration of how to reduce the effects.

Some people don't want to know. I don't understand that. For me, knowledge is power. I'm a pharmacist so I have a balanced view of meds and supplements that may be beneficial, but at worst, which ones are least likely to interact and cause adverse effects, or loss of medication efficacy. I read every new study, am encouraged by what's coming down the pipeline, and believe I am doing everything in my power to not only live, but to live well. I don't say this to put down people that don't want the details. To each their own and this is just food for thought.