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Exploring other treatment options, rather than AI med
Breast Cancer | Last Active: Aug 31 12:36pm | Replies (36)Comment receiving replies
@deechase like many of us, you have a very complex situation with conflicting priorities medically. However, I am not sure why you did not have chemo with an Oncotype of 30. From the site:
"Patients with Recurrence Score results 26–100 significantly benefit from the addition of chemotherapy to endocrine therapy.2,3"
Of course when I was diagnosed the TailorX trial was not done yet and noone knew what to do with intermediate scores like, say, 18. Many intermediate score patients were having chemo back in 2014.
You were taking 4 times the usual dose. And as discussed on this forum, studies of letrozole showed that even 20% of that usual dose of 2.5mg was effective. So you were taking 20 times that.
It is mysterious why that would kick in periods. One would think it would mean estrogen suppression for sure.
Have you tried just 2.5mg alternating days to start? What grade and type of cancer did you have and how strongly responsive to estrogen?
Replies to "@deechase like many of us, you have a very complex situation with conflicting priorities medically. However,..."
I just went by my physician's recommendations that chemo would do more harm than good with the size (0.7 mm) and grade of my tumor PT1bN0M0 ER+ (91-100%), PR-, HER2-, grade 2 invasive DCIS, lymph nodes biopsied but negative.
Regarding the anastrozole, I was in a study that gave me 10 times the normal amount, and that was a huge failure. That is why they did not want me to be back on the med.
Also, as I did some research in PubMed, I found out that AIs are used to help infertile women actually be able to conceive. That raised some red flags for me.
https://www.sciencedirect.com/science/article/pii/S1521690X18301167?via%3Dihub
https://obgyn.onlinelibrary.wiley.com/doi/10.1111/aogs.13395
To answer your question, I have not tried 2.5 mg on alternating days because they did not want me to go back on anastrozole at all.
I just want to add that I was given the generic form once bc my pharmacist could not get my Meds… I bled from it. Immediately went to my Gyno, not the oncologist… she said generic drugs are not equivalent! She wrote my script for only non/generic so they cannot substitute. I never bled again. I wonder after hearing this if that may have been the problem . Just a thought♥️ I don’t know if the oncologist , “whom I love” would have picked that up so quickly… and maybe would have taken me off.
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Just thinking here...the various tests can be confusing. There's the OncotypeDX and another Oncotype Assay thing (forgot exact name). And then there's the huge difference between the OncotypeDX "Recurrence Score" and the same test's 'Risk of Recurrence (locoregional) Within Nine Years."
If it was her Recurrence Score that was 30, her "risk" score is likely around 1/2 of that, give or take a few points. And would not "recommend" chemo as having a good reward/risk benefit. But that number is based on stat data pool if taking 'tamoxifen or aromatase inhibitors.'
Not the easiest choice IF the drugs aren't tolerable but worth giving them every try before ruling them out I think. It's easy to say that as I'm not the person dealing with the conundrum but I like the middle-path of trying a few, at different doses...if they work, fine. If not, no regrets.