stop the madness

I will say that the anastrozole has so many side effects. My oncologist as well told me he has never heard about the bone & muscle pain. I am now getting a small dose of testerone & it certainly ishelping with side effects. Is anyone not taking hormone blockers & just getting blood work every 2 or 3 months to watch their estrogen levels?

Regards
Mary

@queenmary25
Joint and bone pains are one of the biggest problems with anastrozole. There are two other AIs that you can try. I went through anastrozole and letrozole before finally being placed on exemestane which, for me, has the least side effects. However, you won't know unless you try them. As far as the blood work though, I don't have it done until 6 months as that is when I also have my "bone glue" or Zometa infusions to help with possible bone loss from the aromatase inhibitor.

I have tried all 3. I then went to non generic Arimidex. It was a small bit of improvement, but within 4 weeks, I was barely walking again. It has been 4 weeks since I have been off, and I feel normal now. I sleep well, can almost use my hands but still cant bend my fingers, and have had no pain to speak of, other than a bit in my feet when I walk too much, ie shopping. I get my one year, and if I am NED, I will not go back.

@jeaniebean
I am so sorry you have gone through all of this like all of the rest of us. It is a very personal issue and decision we all have to make. Had I just invasive ductal carcinoma, I probably would think about going off of the AI as well, however, my second lesion is neuroendocrine cancer which is highly aggressive and very rarely presents in the breast first (it usually presents in the intestine or liver). So I require PET scans every 6 months as when it pops up elsewhere, the chemo then would be the same as for oat cell ca of the lung.

mari.. Just in case no one has answered your question yet the following explains what an Aromatase Inhibitor (AI) is. I had never heard of AI's until I got breast cancer.

Aromatase inhibitors stop the production of estrogen in postmenopausal women. Aromatase inhibitors work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells.

@jeaniebean
Jeanie - I was thinking about you on my daily walk. Have you tried knitting to help with your hands? I've been knitting dishcloths each night while watching TV...yes, it's crazy, I have over 150 now and will be either selling them or giving to family! However, it helps loosen up my fingers. Another thing is I use walking sticks on my walks and you tend to keep grabbing the tops with your hands so it keeps pumping the circulation. I still tend to have stiffness, but not as bad as without working the fingers out a bit. Hope this helps.

Thanks Trix. I do walk with stix! I used to knit long ago. Will have to pick up some wool and needles. Sounds like a good idea!

Has anyone looked im into balancing hormones naturally? These drugs scare me. At 60 I need a quality of life not misery and pain.

I use a DIM supplement now, and some vitamins. Everyone needs some estrogen for the body. I dont believe starving it is a good thing if this is what happens. I am on week 7 of stopping, and still not back to normal, but I am not the basket case I was and the pain is minimal.

Jeaniebean did you try different estrogen blockers? The reason I ask, is I am experiencing multiple symptoms that have become challenging to say the least. When I go to the Oncolgist appointment in a few weeks I’m going to ask to try a different one. I have been on anastrozole for 2 years now. With the pain in the joints and muscles pain waking me up, hot flashes which now just disturb my sleep, I’ve started with trigger finger which also wakes me up. I am a Yoga teacher and have my own practice which has gone through many changes due to the massive changes in my mind and body. Whew, no one has a clue what we go through when we get that cancer diagnosis and start our new journey through life. So Jeaniebean, what is a DIM supplement and how many estrogen blockers did you try? I am so thankful for all of you that share your stories. Don’t know why but that is hard for me.