What to Expect After AI

SarahATL

Starting in 2021 I will officially be done with 10 years of Arimidex! I've been on some type of treatment for over 16 years, and I'm wondering what to expect on the other side. I'm specifically interested in what it's like to come off of the AI...like, How will I feel? Will I lose weight? Will my libido return? What else? My BC story is long..but quick stats are: dx @25 IDC Stage IIA (chemo, double mast, tamoxifen); dx @31 Stage IIIC on top of reconstruction (chemo, radiation, ooph, AI).

I haven't had any major side effects the AI as far as I know, but since I've been on them for so long, I'm just not sure what normal feels like

Thank you for your feedback!

Sarah

SpecialK

sarah - I did 7.5 years on Femara, then Arimidex, then back to Femara. I stopped when I did due to a combination of a BCI test result that indicated little to no benefit from continuing (done at 5 years, but I stayed on), and a dental surgery unrelated to the meds that required eliminating anything that could affect bone. It seemed like a good time to discontinue, and I had my MO's blessing and endorsement. I had a total hyst/ooph at 45 (diagnosed with BC at 54) for uterine fibroids too numerous to count, and experienced a pretty brutal surgical menopause. When I began anti-hormonals 10 years after that surgery I still had many hot flashes a day. I did not find that taking AI drugs made that worse, and stopping did not make it better. I did develop osteopenia due to my age at the time of the ooph, and it worsened on anti-hormonals. I did have six years of Prolia injections that began six months in and had much improvement in density. I am due for a DEXA scan in January but the one I had after discontinuing Prolia showed no loss of my improved density. I had some degenerated disk issues prior to breast cancer, AIs did make that feel a bit worse, and I had other bone/joint pain as well, but I have certainly gotten older as I took these drugs so I will never know what would have happened if I had never taken them. I do still have some bone/joint pain, but it is lessened and is age-appropriate I think, lol! I never had any issues with mood swings, anger, depression, brain fog, or any other emotional changes, so I can't speak to that. I did gain weight - 10/15 lbs - with treatment, and found the only way to lose it was an elimination diet. I have been off Femara for about three years and that still holds true - no weight magically vanished, and I will gain even if I eat in moderation. Exercise does not help me lose weight, but does help me maintain weight loss. My hair did thin, but again I will never know if that was coincidental or caused by the meds. Genetic testing revealed a propensity to thinning hair, so I will never know, and my hair did not become thicker after stopping the meds. I had wicked insomnia before and during treatment, and it continues after stopping Femara, it is just part of who I am apparently. All in all, I feel pretty good, but not vastly different than I did on the meds. I am glad I stuck it out for the duration, but also glad I don't have to take them anymore too. Wishing you the best - it is a bit of a feeling of flying without a net to stop, but that got better with time.

MikaMika

SpecialK,

I like reading your posts. Thank you so much! You are very kind and positive person and always share good recommendations.

SpecialK

mika - I happened to click on this thread and saw your comment, that is so sweet! I’m glad anything I’ve said resonates or is helpful to you! I also noticed it says California by your member name,I’m a California girl, I miss my home state!

ruthbru

I didn't have any real problems with Arimidex, but once I was done I gradually noticed the feeling of my overall mood lightening......I can't even describe it but I just felt 'lighter'. I don't know if it was medication related or just that I didn't have that daily reminder of cancer.

Springdaisy

Hello, December 14 I finished my radiation treatment. I will see my oncologist next week. I think he’s going to start me on Arimidex. Can you tell me about hair loss? I normally don’t have bad reactions to drugs although I was healthy so didn’t take many drugs before this stage 1 occurred, anyway, I really don’t want to lose my hair and I’m wondering what you experienced and is Arimidex or femara better for hair loss?

Thank you for your time.

letsgogolf

I have been on Arimidex for almost 4 years and have never noticed any hair loss. Didn't know that was a possibility with this drug.

DebAL

ruthbru, sorry if I missed it. How many years were you on AI? I'm only 2.5 years in. My original oncologist said 10 years. Offered no explanation as to why. Never really cared for her and have since switched. When I asked my new oncologist she did a calculation and said I'm low risk with low benefit to continue after5 years. She briefly mentioned maybe 7. I'll cross that bridge when I get to it. Just gave me a slight glimmer of hope. I'd love to have a lighter mood as you describe! Glad you are doing well

ruthbru

I was on for 5 years. I was only mildly ER positive & PR negative so both my oncologist & I felt like 5 years was enough (probably for the same reason as you, low risk & benefit). In fact he said he would NOT recommend 10 years for me....he said he would write a prescription for no longer than 7 years, and that would be more for my peace of mind than it actually being any real benefit.....that conversation was early on when I was freaking out about everything & thought I should probably take it forever. When the time came, I was more than happy to be done!

DebAL

ruthbru, I'm mildly ER pos and PR neg too. My oncologist also said no to 10 years but we will discuss 7. I'm sure its more for my piece of mind too. I'll just have to see how I feel when ( hopefully) I get there. I've settled in to taking it but it sure would be nice to see how I feel without. No plans to take any breaks in fear I wouldn't want to ho back on !! Congrats on doing so well. I hope to follow in your footsteps

ruthbru

Deb, you have even better stats than I did, and it looks like you are doing all the medically recommended treatments, so I believe that you absolutely will follow in my footsteps! (If you haven't added lots of exercise to your plan; do so, exercise is the most effective non-medical way to really reduce recurrence risk!)

SarahATL

Thank you @specialK for the thoughtful and thorough response! I appreciate the time you took. I'm officially off an AI as of January 1. I'm trying to be very mindful of my mood and energy levels to see if there's any changes....I sure hope so. @ruthbru -- your note about "lightness" makes me so hopeful as I frequently feel a sense of the opposite. I'm hopping to experience the lightness too! I'll continue to update y'all on how I feel.

RE: Hair loss. My hair has definitely changed since cancer. When it came back both times after chemo, it had a different texture, but I think that it was always as thick. (I used to have very course hair). I'm not sure if it was the chemo or the Tamoxfin/AI.

Many may be wondering why I did 10 years of AI. My age at diagnoses has a lot to do with it (25/31) and nature of my tumors. When I was approaching 5 years on an AI, my oncologist recommended a test (which I think was new at the because I got it for free) which showed probability of recurrence and whether or not I should stay on the AI. Its results paired with the current scholarship led her to recommend 10 years over 5. I just went through my records to see if I could find the name of and report from the test to no avail. I'll keep looking for my results because I'm so curious now! This would have been in 2014/2015, I believe. Luckily, I've tolerated it Arimidex pretty well in the ten years I've been on it. But, when you're on some kind of cancer treatment for over 15 years, it's hard to know what is normal.

I've read that the benefits of an AI extend for many years after you've stopped taking the drug too.

Sarah

Peregrinelady

Could it be the BCI (Breast Cancer Index) test? I, too, am doing ten years based on the results of this test. I am at year 6 and so envious that you are finished. I want to feel “normal” again. Please keep us posted on how you feel off of the drugs. Take care.

DebAL

sarah, congrats on being off the AI and please keep us posted!

Ruthbru, yes have always been an avid exerciser so I'm good there. I'm lucky enough to work in a fitness center too so no excuses!

I have a bit of brain fog too. Not sure if its a mixture of age, chemo or AI. Some days are better than others.

Looking forward to feeling lighter someday too!

ruthbru

If any of you want some exercise buddies, check out the Let's Post Our Daily Exercise thread on the Fitness Forum. A really fun group of ladies to hang out with!