Doing Well on Aromatase Inhibitors (AIs)

2FUN

when my eyes are dry they feel like I have onion juice in them. Gotta get me some eyedrops

cindyny

Meg101- I was just diagnosed w dry eye 5/11. Dr told me to get the same as you stated - Refresh Optive lubricant eye drops. Day 4 today, good so far.

miranda2060

Thanks for the tip, I just got the Refresh drops (the CVS generic version of same, actually). They feel good. A woman in my yoga class who also takes Arimidex told me to take the pill 20 minutes after eating to avoid the mild nausea I am experiencing.

DebAL,linked below is an abstract of a study on the effectiveness of AIs and Tamoxifen in preventing recurrence. I actually got my information from a couple of books by MDs: one is by David Chan, "Breast Cancer: Real Questions, Real Answers," and "Breasts: The Owner's Manual," by Dr. Kristi Funk, recommended by one of her patients on this board. Dr. Funk details a couple of trials, one of which showed that the AI cut invasive breast cancer by 65 percent compared to a placebo. Another study showed the AI cut breast cancer by 50 percent, dropping the cancer rate from 4 percent with placebo to 2 percent with anastrozole. "This might not sound dramatic, but that's over 4,600 US women every single year who don't have to deal with breast cancer."

https://www.ncbi.nlm.nih.gov/pubmed/23342281

An article I found:

https://www.medicalnewstoday.com/articles/297297.p...

debal

Thank you Miranda! May i ask , for those of you that did chemo how long after chemo before you started on AI's? Just curious if it was immediately or a few weeks later?

hersheykiss

Deb, my MO started me on the AI after chemo and radiation. It was 2-3 weeks after radiation ended.

muska

I started arimidex two weeks before I started radiation. 4+ years later am still on arimidex without significant side effects.

debal

Thanks ladies, I was hoping for permission to detox from chemo for a week or 2 before starting AI's but will do what I'm told!

bravepoint

I met with my MO just as radiation was ending and got the Rx for an AI. I waited to start though til I had a bone density done and felt recovered form treatments so it ended up being a couple of months.

denise-g

I've been on Arimidex for 5 years and 7 months! Had a lot of SEs for the first couple of years, but knew I had to stick it out. During the summer months, I have far less joint pain than I do in Ohio winters, plus I am more active.

My sister has been on Arimidex for 2 years. She and I can truly predict the weather as we know when the barometer moves. Within minutes when I am hit with stronger joint pain, I will call her and she has the exact same experience.

Although I would not recommend sisterly breast cancer, it is nice to have someone to share our pain and SEs.

But overall, we are doing great - both of us just had NORMAL Dexa Scans. That is truly good news.

All my best wishes and my advice - hang on. Often it gets better!

miranda2060

I met with my MO a couple of weeks after radiation ended, and she gave me a month to heal from radiation, get a bone density scan and think about the AI. My sense is there's really not a great rush to start the AIs.

Kimmer33

hi ladies!

I am joining the AI group this week, after a conversation with my Onc and a review of bloodwork - I was nowhere near menopause when diagnosed so they started me on tamoxifen right after rads but after 2.5 years am now post menopausal. To avoid any risk of uterine cancer we have switched to an AI this week, so waiting for the SEs to hit! I have experienced a good assortment of hot flashes and bone pain (feet) on tamoxifen but wondering how much more until I am done with these SEs! Hoping to get to know some (or all) of you and hearing some of your experiences!

Kim

debal

Denise, very encouraging you and your sister are doing so well. I'm glad to be starting in June so I will hopefully have 6 months on arimidex under my belt before dealing with the Ohio winters too ugh! Welcome Kim, i hope your side effects are minimal! I also wondered if most of you stick to the same brand/ manufacturer. Generic vs name brand and if you noticed a difference? Thank you!

2FUN

anyone out there do porly on AI first try, and then when you tried it again later no/limited SEs?

Runrcrb

yes. I started on arimidex. No energy, joint pain. Switched to aromasin. Now just joint pain - but less than arimidex. Notice a big uptick in pain if i dont exercise so i prioritize activity each day.

Polly413

Deb, I finished chemo the day before Thanksgiving and did not start leprozole until mid February. I did have a Dexa scan prior to beginning. I did not do radiation. My MO was not in a hurry to start the AL. I think he wanted me to have time to recover from Taxol which gave me some neuropathy in my hands but I was not worried because it is my understanding that chemo stays in your body for some months. So almost 3 months for me between end of chemo and start of AL. Having very few SEs. I am 73. Polly

Runrcrb

Debal,

I did chemo, did 7 weeks of radiation starting about 5 weeks after my last chemo. I started AI four months after my last radiation. My oncologist wasn’t adamant that i start right away but did want me started within a month after ending radiation. I took three weeks off between the two AIs when I changed. Also took 4 weeks off when i had DIEP as my surgeon wanted me off every thing for a period of time.

Meg101

I started Anastrazole about a month after all of my treatments were completed. So far in the month I've been taking it, I haven't noticed any side effects that can be attributed to the AI. I take it every other day. My MO said not to split the pill in half, but to take a whole pill every other day for about a month, then increase it to every day.

When I was in my early 50s I experienced typical menopause pain in my joints, especially in my wrists, thumbs, knees, back, and feet. When I became post menopausal the pain eased, my stress level dropped, and I began sleeping better. I still have occasional hot flashes, but those are tolerable. I wonder if the SEs attributed to the AI are actually the aches and pains of being in menopause. If my menopausal pain returns after I've been on the AI a while longer, I'll post about it so we can discuss menopause SEs vs AI SEs. It's possible those who experience pain while taking an AI may actually be feeling the SEs of menopause brought on by BC treatment including an AI.

debal

hello everyone, meg, great idea about posting about the side effects. I'm pretty active, a little joint pain here and there which is to be expected. I'm hoping to catch a break after the last chemo and detox before I start. This thread is so helpful just to know it's possible to get by with minimal side effects and there is the option to switch drugs if needed. Time will tell. Thank you all!

Kimmer33

hi Meg! Great idea about posting SEs, you might be on to something

smwusaf

Since the AI is really throwing me into beyond menopause with no hint of estrogen (losing hair, painful sex, dry skin, etc) I wonder if some of that will return to more normal once my 5-7 year sentence is up? I'm dealing with it all but I'm hoping this isn't making me older quicker, if you know what I mean.

Meg101

Hi Everyone!

My greatest fear about taking an AI is bone loss, hair loss, and loss of cognitive ability. If Big Pharma could find a way to prevent these SEs, I could find a way to handle the aches and pains.... well, maybe not. Losing our cognitive ability and/or having our female organs dry-up from the inside-out seems almost as bad as having a recurrence. We are expected to be willing to take a chance with bone loss, cognitive loss, and internal female organ damage in order to "maybe" prevent the possibility of a recurrence. Let that sink in.

Sorry for ranting, but I need to vent. I have remained positive throughout surgery, chemo, and rads, but this stupid little pill (AI) has put me over the edge. I'm not convinced the benefit of this drug outweighs the risks. This is not just about "QOL" issues. This is about our brain function, our bone function, as well as other bodily functions. Yet, I'm still willing to take a chance on this pill.... just in case it works to prevent a recurrence.

OK, now that I've verbalized the negatives, I'm hoping to get back to being more positive. But first I think we need valid information to make an educated decision about these Aromatase Inhibitors.

Does anybody have a link that states accurate statistics about the "rate of recurrence" for those who took (or are taking) an AI vs those who didn't? Hopefully we can find stats that aren't funded by the pharmaceutical or medical industries. However, even those stats will help if no other stats are available. I'm hoping the statistics will help guide us as to whether or not an AI is worth the risk.

Meg

Meg101

Hi Deb! I'm so glad you are doing well and that you are active on the BCO forums. I remember when you first started. I've been following your progress. Did I read that you use to be a nurse?

Runrcrb

Meg101 - have you asked your oncologist for accurate stats and studies on this topic? I would start there and when looking online, spend time in the National Institute of Health website versus plain old Dr Google.

I don't think AIs are impacting my cognitive abilities. Yes, I have some joint pain; yes, I struggle to loose weight; yes, I have as many hot flashes as i did prior to hormone replacement 8-10 years ago. I think my stage in life (middle age, post menopausal) may contribute to these symptoms too. Would I like to feel like I did 12 years ago? Absolutely. Regular (daily) exercise of an hour or more makes a huge difference in the joint pain so I'll keep that up. Sugar, wine, heat and stress contribute to the hot flashes so I just plan on that - and keep a glass of cold water nearby. The weight loss - still working but in the meantime, just buying some looser clothes.

Pattimills2017

Thank you for asking.  I just had my lumpectomy and sentinel node removal a week ago and saw my MO yesterday.  Stage II IDC.  Node negative, margins clear, Estrogen+, Progesterone+, Hers2-.  She requested Oncotype DX and now waiting the 3 weeks for the results.  So chemo is a ?.  Radiation is a definite and she wants to follow up with Aromatase Inhibitors treatment.  Reading the side affects I am terrified.  I need to hear some positive. 

Meg101

Runrcrb - Thanks for suggesting the National Institute of Health website. I'll take a look at it and if I find some good information I'll post a link here. As for talking to my MO about AI stats, my next appointment will be in 6 months so I'll have to wait. My MO loves discussing medical research so I'm sure she'll be receptive to my questions.

ruthbru

My personal risk reduction was 40%.....HUGE, and twice that of chemo (which I also did). I never, ever want to deal with a cancer diagnosis again and was glad to use all the tools available to make that less likely, including the non-medical risk reducers of daily exercise, keeping at an appropriate weight, limiting alcohol etc.etc.

Of the ladies I know personally who have taken AIs, or are taking them now, none of us had anything more than annoyance side effects (hot flashes, some achiness etc.). And yes, they go away once you are done (except the ones you'd actually have anyway as a natural result of the privilege of getting older). You have to remember that most people who don't have bad side effects aren't online talking about feeling fine (except some of us nerdy ones ), they are just out living their lives.

debal

hi meg. One more chemo to go then will start on arimidex. I agree with you about the stupid little pill. I never thought I would say it but chemo was so uneventful for me I'm dreading this pill more but willing to take the chance and see how it goes. (I'm a pre-op nurse; take care of lumpectomy, mastectomy patients, port placements etc. It's hard seeing other women go through this. My scarf gives it away but I'm glad to be able to answer any of their questions and help in any way I can) As runrcrb said it sounds like exercise must be a priority with these drugs

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Taco1946

I second trying another AI is the first one gave you too many SE's. I started on Teva arimedex about 6 weeks post Taxol (I had bad neuropathy and stopped after 8 infusions). Had brachytherapy before I started chemo. Had headaches in addition to joint/muscle issues. Switched to Femora seven months ago with minimal SE's. I haven't paid attention to brand.

I also second whoever said exercise is critical. I must admit that I have done minimal about changing my diet. At 72, major diet changes was a quality of life issue for me. DH also wasn't interested in a gluten free diet. He would have tried to help me if I'd decided that what I needed to do, but I didn't. I tried Atkins about 6 years ago and gained it and more back when I stopped. I've actually lost "a little" weight since I upped the exercise.

If you are just starting on the AI journey, hang in there if you can or work with MO about other options. I also remind myself that I had arthritis before BC and I am now 18 months older than when I was diagnosed. Much to MO's surprise, I had the bone density of "a thirty year old."

smwusaf

pattimills - here's hoping for a low number on the oncotype! the waiting sucks but if it's low I bet they won't recommend chemo since your nodes were clear..

I hate taking medicine but if it will keep a recurrence at bay I will adjust. My SEs are somewhat minimal but aggravating sometimes. It's just an adjustment to figure out how to reduce the effects on you own personal standard of living.

Exercise is key for me. Plus looking at my life as a whole has been good too. Diet, emotions, exercise, they all play a part. I've been reading a book called Anti-Cancer, A New Way of Life by Dr. David Servan-Schreiber. He is a brain cancer survivor and the book is all about integrating medical with emotional, diet and exercise. He does a really good job of explaining WHY some things need to change and I am realizing that if I slowly change one or two things at a time I can really get my family on board without their even realizing it. For instance, only buying meat from grassfed cows and chickens. They have no idea but now they are more likely getting a better balance of Omega 6's and Omega 3"s in their diet.

Meg101

Ruth - I'm glad to hear the good news about no recurrences for those in your group who are taking an AI. We hear so much about the negatives, it's good to know there really are success stories with these drugs. I haven't experienced any SEs yet on Anastrazole so I'll keep taking it.

Yesterday I browsed through some of the Stage 4 threads. Those women a truly heroic. They research new drugs & trials and post the scientific studies showing the mechanism of cell mutations and immunotherapy. Did you know if you are HERC+, immunotherapy works very well, but not if you are HERC-? The good news is your HERC status can be manipulated to become more receptive to immunotherapy.

If you want a more thorough and accurate explanation of new treatments & discoveries in the field of breast cancer, look at the 'Stage 4 Liver Mets' thread. You will be inspired.