Needing opinions on different AI pain/SE perm/temporary

cshellsic

Hello all,

I'm seeking some advice and information based on your experiences and background for myself regarding AI's. First some history on me: I am 53. I've had osteoarthritis in both knees for 8 years. Two years ago I did a total knee replacement (TKR) in the right knee that is currently in need of revision already. The left knee is bone on bone and is getting very close to needing a TKR . Two years ago I was diagnosed with osteoporosis of the spine and osteopenia of the hips. This year's Dexa report showed that it was slightly worse. One year ago I was diagnosed with stage 1 ductal carcinoma in situ cancer of the left breast. I've gone through my lumpectomy, chemo and radiation. In January I had a pulmonary embolism (PE) /blood clot in the lung and I'm now on a blood thinner. This week I will be reducing my Xarelto down to 10 mg from 20. Due to the blood thinner I've had to get off of the NSAIDs for my daily pain that I experience from osteoarthritis in the knees. My last 6 months of daily actively and being able to enjoy simple activities has been impacted greatly. I had Reclast infusions for my bones back in November and last week (July). Normally it's given only once a year but due to my osteoporosis, the chemo, my age and the effects that the AI's will have on the bones I had it two times in one year and I expect it to continue that way. In June I started to take subcutaneous gamma globulin infusions (Hizentra) weekly to boost my immune system (low IgG) so that I hopefully will not continue to get 7 to 10 sinus infections per year with needing to be on antibiotics the same amount. I have had sinus surgery 2 x's. So that's my story - am I am sticking to it. LOL

Now that I've finished surgery, chemo and radiation and I'm handling the infusions for my immune system well I'm about to start taking aromatase inhibitors.

My questions:

1 - What is your personal belief or have you seen any studies that if a person experiences bone/joint pain due to AI does it cause temporarily or permanent pain? I was told that it is temporary and not damaging and that if I get off of the AI's it will stop. I was also told that if one AI is causing pain to stop and switch to a different one in hopes that the other one will not cause joint pain.

2 - My oncologist would like to start me on Femara and a different oncologist that I saw suggested Arimidex. Have any of you found that any of the three AI's are less likely to cause side effects? or that one causes fewer people to experience SE? I am only considering Femara, Arimidex and Aromasin. (Tamoxifen is not an option due to high risk of blood clots and i am post menopausal).

3 - Has anyone found a difference in taking a brand-name versus a generic for the AI's?

Thank you so much for any input. To be honest I have been crying every time I think about this and the thought of experiencing more pain then I'm currently going through with my knees and additional diminished mobility frightens me. I fought really hard to work this year through my treatment and was able.. I am widowed having lost my husband my husband 14 years ago to liver cancer that metastasized to the bones. I am very strong and not one who is easily scared but in all honesty I'm so scared that this is going to be a harder fight then the last year with the surgery, chemo and radiation. I just wish I knew if one AI over another is better but I think the answer is no. I am just concerned that if I am one of the people who gets SE that I will not be able to reverse side effects.

Moderators

Dear cshellsic,

Welcome to the BCO community. We are sorry that your diagnosis and subsequent treatment decisions have brought you here but so glad that you reached out to our members. It sounds like you have been through a great deal these past years and so no wonder you are feeling worry about anticipated side effects. In that you have not yet received a response here we are thinking that you may want to visit and post in one of the threads that is devoted to the specific hormonal therapies that you are considering. You can find more information and links to Hormonal Therapies at this imbedded link. At the bottom of the page you will find links to the various topics for those who are considering or actually taking the specific treatments that you reference. We suggest that you start with one other topic and post there and then wait for some responses before posting in a separate topic as it will get confusing. Be sure to mark your topics as favorites so you can best track your replies. Keep us posted on what you learn and what you need to make the most of our community.

The Mods