Wanting to stop anastrozole, I'm at the end of my rope

@ Dolly

Your MO can give you some vaginal cream that is OK to use (I am on anastrozole and I was told from the start if dryness gets really bad I could use vaginal cream.) I would discuss that with your doc at your next appointment.

I would also discuss switching to another AI or tamox if anastrozole doesn't work for you at all.

Not sure lymphedema has anything to do with the medication though.

Best

Hi Dolly, I am hearing you. I took the AI drug Femara for 9.25 years and had lots of side affects along the way. In the end I just couldn't make it to 10 years and the oncologist suggested I switch to Tamoxifen, but that only gave me headaches, so I quit at that point.

I developed dizziness (vertigo) at about the 4-5 year mark while taking Femara and suggested to the oncologist that maybe it was the Femara. He said he didn't think so, however agreed for me to take a break off the drug. I had 6 weeks off the drug and I have to say that I was starting to feel somewhat better with less vertigo and less aches and pains, and the depression was lifting, but once I went back on it, the vertigo returned to being so bad I could hardly stand upright. This went on for 9 months. I eventually decided to give myself another break from Femara and had a 3 month break. This seemed to totally change the problem and all the vertigo went away. I felt that the 6 week break wasn't long enough to clear it from my system. After the 3 month break, I then returned to taking the AI up to a total of 9.25 years. I would suggest that you should not do this without the oncologist agreeing to having another break from the drug, but I found this was what helped me cope and get through the 9 plus years on the drug. Through all that time I would drag myself off to full time work each day, and looking back now, don't know how I managed to do it, but in a way, I think work helped me, as once I got to work, I had to focus on the job at hand, and not think about how bad I was feeling.

I do have lymphedema caused by the removal of 30 glands and then the radiation of the axilla on top of it, and have also developed a new disease called lymphangioma circumscriptum which I have had to have 2 surgeries for in the last 12 months, however this was not caused by the Femara, more that my lymphatic system was compromised by all the surgeries, removal of 30 glands and radiation. I have experienced all of the symptoms you have documented above, plus others like eye problems, but I have weathered it all, and try to just do one day at a time, and think that at least we are lucky to have a tablet to take, that might extend our life. I know it is hard, but I think about the end result of still being alive and around a bit longer. I now have very young grandchildren, with more babies on the way and I want to experience all those wonderful experiences, so feel that the tough time was worth it.

For me, I found the isolation that breast cancer brought was the worst, as I live in the country in Australia and was travelling to a capital city for all my treatment and appointments which was almost a 700 klm round trip (have done 75 trips) and had no one close to confide in. Hang in there with it, but I would suggest another chat with your oncologist to see what she can offer, and if you have any further queries, I am more than happy to help in any way I can.

I I can't blame you at all for wanting quality of life! Who doesn't! I really can't even imagine all the things you're going through! That lymphedema thing sounds like a major pain in the ass! Dollydeb, make your Dr understand your feelings, it's really not that big of a deal to switch to tamoxifen, millions of women do fine on it.AIs are just fractionally better. At least you can try it, or another med. Maybe you wouldn't have ALL the side effects. Even a small difference might help the outlook.When I first started anastrazole I hated It! Sweating , insomnia moody, aching joints. Esp insomnia which aggravated all the other symptoms. Used the Estrace, and tamoxifen for about 6 months, then back on anastrazole, seemed to help all the side effects. After awhile, symptoms seemed to ease off. Also took sleeping pills for awhile, sleep really helped. Make your Dr feel your pain!! There are things to help.🤗 Keep venting here! Love and hugs ,girlfriend

Dolly, from your history let me list the TOUGH things you dealt with in the past 2 years ( we were diagnosed about the same time) - this is MY list is, to remind ME to cut myself some slack, not that dissimilar from yours, apart from having only 😳mild LE.

1. Cancer diagnosis

2. Chemotherapy

3. Surgery Major and pretty life changing, to some disfiguring comes to mind

4. Radiation

5. Work loss, financial changes for lack of a better word

6. Time loss

7. AI - drugs that without a doubt have a side effect profile that looks sweet when compared to chemo but not so when compared to other medication lets say antireflux tablets

To be frank its a continuous wonder to me that most of us manage to keep pulling it together and smile, cook, clean, work and communicate with those that surround us in a loving way. So give yourself time to grieve and then start putting "the pieces" back together slowly - for me it took/takes all my strength and courage.

Change yor AI if you have too. My mother has had too and she is one tough cookie but the joint pains where horrendous. A colleague has switched from Aromasin to Arimidex and is now better on Tamoxifen ( the numbers between Tamoxifen and AIs are different but not as much you might think - ask for specific numbers on prognosis between them when you make your decision).

Ask for anti anxiety tablets if you need to. I needed sleeping tablets but I am ok now.

I find swimming or any kind of water therapy helps a lot with LE.

The oestrogen creams can be useful - I use coconut oil.

All of this to say - there are so many here who get it.

Its a crap shoot but you are not alone.( I had to laugh at your breast prosthesis story - I had a unilateral mastectomy no recon, small breasts so I use a rolled sock - and keep a trusty spare sock in my car - I am so busy with life and children I often forget I rush out lopsided....)

(())☺️🌷🐣

I'm so sorry to see your posts. I am on a different aromatase inhibitor with lupron and my symptoms are similar. I want to quit every day and then I remember my 3 year old. It is so unreal how much the hormone therapy has changed my ability to function...such a hit to quality of life.

I found this cream to help somewhat - https://www.amazon.com/Organic-Intimate-Moisturizer-Personal-Lubricant/dp/B0071Q5PL0 it's not 100%, but better than nothing. I also really struggled with sleep and have been taking 300mg of gabapentin. Again, this is no miracle but at least helps me to feel better rested most days. I hope either of these might help you a little. I had no clue a vulvar specialist even existed! Please do share if you ever get an appointment and find anything helpful. I'd love to know. Good luck to you.

exemestane was better on joint pain but I suffered severe dry eye also puffy face and weight gain. Good news when I discontinued exemestane the severe dry eye cleared right up. After anastrozole, after stopping it my joint pain improved. I have been off for almost 3 years and still have lingering pain. This medicines are brutal.

Hi everyone...just want to say its really sad that you are all suffering from anti hormone therapy. Yes, it does reduce recurrence rates by 50 percent if you can tolerate them! Many cannot. My doc at a major NYC university hospital told me 40-50 percent do NOT complete the recommended years of treatment due to side effects! I don't understand how it can be called an effective treatment with those stats! Also just want to mention that weight loss and exercise has been shown to lower recurrence rates by 40 percent. Both are difficult to achieve while taking anti hormones, especially aromatase inhibitors which are hard on the joints. We need better treatment options! Good luck to all navigating this complicated disease.

Hi Nickel, my eye doctor tried everything to help me. Not much relief it was my oncologist who said stop exemestane immediately. He was right.

The cream has really helped me. I felt like my skin was tearing when I wiped myself. The other thing that help is Osphena. It's a SERM, a type of estrogen that cancer doesn't see. I figure a little of the wrong kind of estrogen was better than quitting the AIs altogether which I was very close to doing.

Dollydeb - I so wish I’d seen your post months ago! I hope the exemestane helps relieve some of the SEs you had on anastrozole. I can’t understand why docs just brush off what we report for so long. There are alternatives out there with different SE profiles and we all know that there’s no way to tell which SEs, if any, will effect you vs someone else.

On the vulva issue: coconut oil can really help with the soreness. Sounds simple and it is. The sores sound like they’re going to likely need an antibiotic though. Seems like your MO or PCP could prescribe one for you. My GYN gave me Intrarosa for the dryness and atrophy that cause the pain. It’s the precursor to estrogen. It’s inserted daily and works just on the local tissues meaning it’s not systemic. I use 1/2 of one every other week or so and it gets the job done. Sex became a part of my life again and I was no longer uncomfortable using the bathroom. With the lack of hormones and sex drive i do still need extra lubrication when it comes to sex (especially at the beginning), but penetration overall is no longer painful or uncomfortable. DH and I did try a new lube over the holidays that i picked up on a whim (it was peppermint hot chocolate flavored). It was the bomb. Never experienced a lube like that before and it rinsed away cleanly with just water. Amazing! I can’t remember the name though. I left it at the condo we rented for Dec-Jan. We’re going back this weekend so I’ll get the name and post it then. I hope this helps!

I can relate to you ladies. I have been on Arimidex now for 18 months and it is a slug.

Sleep... its elusive. Sometimes all night no sleep. More often then I like. Doctors suggest sleep hygiene, taking Arimidex in the morning, pumpkin seeds. No sleeping pills. They say they are addictive and difficult to get off. I cannot function well without sleep though. I hope it gets better.

Then there is the heartburn. MO agrees its from the Arimidex. Suggests taking Proton pump inhibitors prescribed from my GP. My GP thinks PPIs are bad for you and won't prescribe them. He says there is nothing he can do. So I take TUMS (need calcium anyways) and Zantac and try to eliminate spicy food or empty stomachs. It takes the edge off.

Same as for the lady parts. Bleeding. Soreness. Somedays it hurts to walk or to lie down. I use Replens which stings. GP says there is nothing he can do because I can't have estrogen. He did suggest continue the Replens and try a vaginal probiotic. MO says to try coconut oil or olive oil and to use RePlens every days and KY Jelly everyday on top of that. If the symptoms do not improve, she will send me to a gynecologist.

And then the migraines - especially if little sleep. And now I am getting bone pain in my fingers and feet.

I feel old and tired; ummotivated. I am sure a bit depressed too.

So, I can relate and i feel for you ladies who really suffer.

Despite all this, I am glad I can take hormone therapy. Its just shy of 15 years since my stage 3 hormone positive BC, so I think this Arimidex is helping with my new diagnosis and helping abate recurrance from the 1st one. Thank goodness for modern medicine. I sure hope I keep it all at bay. I am only 55 (I can't believe I say only 55) and the sole breadwinner in our family. I want to live long enough for grandkids. I love life!!

Wallan

For any of you that have switched type of aromotase inhibitor, or switched from one to tamoxifen, have your side effects lessened? I’m doing Lupron injections with letrozole (femera) for 18 months and the side effects just continue to get worse every month. I’m at the point now where it’s really difficult to walk and to work. I want to just cease taking them and say no...but then I look at my 3 year old daughter and know that I can’t. Hasn’t anyone had luck with a switch?

DollyDeb, I hear your heart and your desires and my thoughts and prayers are with you as you make the decision for quality-of-life. I’m at the crossroads to continue another 6 months or stop at 4 1/2 years on Aromasin — it’s been a LONG 4.5 year journey. May God have mercy on each of us 🙏🙏