Is there anyone that had estrogen positive cancer, without use of AI?

Thank you for such a well informed entry. I am one of those cases that was reported wrongly. I decided not to go with the flow and take drugs for five years just on the off chance that those drugs, with all their side effects, some long lasting, would prevent metastasis. I felt that I had to use subterfuge in order to keep on the good graces of my oncologist. Although none the three drugs prescribed ever passed my lips, they were all "discontinued because of side effects not tolerated". I quoted different side effects for each prescription. I am absolutely certain that I am one of many with similar stories. I do have metastatic breast cancer but absolutely do not regret those years free of drugs.

My onco and I are working very closely together. She actually has an interest in the reactions of women to these drugs. While we researched we found that it is only a 5% increase in chance for a better result. She is more interested in why I had this reaction. We have found through my geneology that arthritis in my genes, mother, sisters, aunt, father, uncles, etc. is brought to the forefront when taking these drugs, and only heightens these side effects in the drugs. We also found that the fillers used can have a dramatic affect, and if not tolerated, should consider a more pure drug, unfortunately not covered by most insurances. I see her every 6 months, along with my doctor. There are many studies out there, and I am fortunate to have an oncologist that realizes how strong these drugs can affect the body, while most only follow the studies in place and have little knowledge of other alternatives. The cancer may be at bay for a few more years, but the issues these drugs cause can create problems that make living with a decent quality of life quite difficult. I stand by my statement and I am very happy for you and others that you can tolerate these side effects. Good for you. Not for all.

Thank you for such a well informed entry. I am one of those cases that was reported wrongly. I decided not to go with the flow and take drugs for five years just on the off chance that those drugs, with all their side effects, some long lasting, would prevent metastasis. I felt that I had to use subterfuge in order to keep on the good graces of my oncologist. Although none the three drugs prescribed ever passed my lips, they were all "discontinued because of side effects not tolerated". I quoted different side effects for each prescription. I am absolutely certain that I am one of many with similar stories. I do have metastatic breast cancer but absolutely do not regret those years free of drugs.

I just want to say, to anyone contemplating an aromatase inhibitor, that I have found that any medication that affects hormones (Tymlos for bones is another one I take, the side effects change over time (and sometime even fade) as the body adjusts. People could perhaps start off alternating days, which my doctor approved.

I also think there are two sets of side effects to consider: the effect of the drug and the effect of estrogen deprivation. I honestly don't know if these are one and the same but I personally found that side effects changed over time and then lessened.

I started letrozole November one of 2021. At first, I experienced gosh awful hot flashes, hair loss, extremely dry skin, and depression. However, they have pretty much subsided now. My system has always been hypo glycemic (low blood sugar); however I’ve now been diagnosed as prediabetic. The good news is, for me, my last A1c test showed that my system has adjusted back down to just under the prediabetic numbers. My hair seems to have stopped falling out; my skin is becoming more moist. My points: it seems that my body is acclimating to the Letrozole over time and the side effects are calming down for me. My oncologist and I have discussed this. My choice is to hang in there and see where this all goes for me. By the way, I agree with the fact that this 80 year old body had very little estrogen in it to begin with. L O L

@joiful I have posted before about hormonal meds, both for cancer and for osteoporosis. I think that with meds that affect hormones, side effects change over time. Changes in hormones affect the body but not immediately. I had the same experience: hot flashes and other side effects that faded.

With my osteoporosis meds, also hormonal, this also happened: the fast heart beat and headache faded.

One option with hormonal meds is to start with a lower dose and move up as the body adjusts. For AI's that would mean alternating days, which my docs approved. The Femara insert actually states that 20% of the usual dose is effective.