It is so good to be able to vent on here and get genuine understanding of just how difficult living with these side effects can be.
I was fortunate to cope reasonably well with Letrozole once the first few bumby months passed. That was until recently. After over 3 years on this drug (2 years on Tamoxifen before that) my body started to rebel. It became a bit of a vicious circle in that the increased and additional effects stopped me from doing the very things that had worked to combat my side effects originally!
I was not even sure that I could blame the Letrozole or whether I was just getting older. But last week was my routine check-up with my oncologist. Along I went with my list of changes and she quickly confirmed that they were indeed things that they see in people on Letrozole. I was a bit surprised because I genuinely thought that if I had been ok for 3 years then I should have continued to be ok with it. But it seems not. My body had just reached a point where it could no longer hold its own against the effects of long term Letrozole therapy.
For me the solution (I hope) has been to change back to Tamoxifen. I have the rest of this month off Letrozole to give my body a break and then it’s back to Tamoxifen. This was what my oncologist says is best for my particular situation. As we know, different things are best for different people.
Tamoxifen will be better for my bone density, better for my cholesterol levels and will not cause the tendon issues which had begun to plague my life. At only 53, these issues are really important. I actually said if it was a choice between the side effects and getting cancer back then I would take the side effects but my oncologist said it is not like that. Tamoxifen still gives me very good odds against recurrence but without some of the more serious quality of life effects and other health issues.
None of these drugs give 100% guarantees, as we know, but finding the one that gives the best balance of protection and quality of life is important. I had excellent quality of life on Tamoxifen previously, but that was before my ovaries were removed. I will have to see how I go with it this time. But I have my fingers crossed. I must say that I did not realise the pressure I was putting myself under to stay on Letrozole until my oncologist said it was best to finish with it. I felt very relieved but also quite emotional when I left her rooms. I am over halfway through my 10 years on hormone therapy so I hope this change will keep me both cancer free and in reasonable general health.
I think it is really important to have good communication with our oncologists and to listen to their expert opinions. I really thought I had no choice but to stay on Letrozole but for me there was another choice. Explore all options.
Take care everyone and wishing that we could all find ways to ease the effects. xxx
