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

Winnie13

I'm almost at the end of radiation. 1cm tumor, no lymph nodes removed during my lumpectomy. I am er and pr positive, and 70 years old. I have decided NOT to take any pill. I know that decision is not a popular one...Anyone else decide against on of these pills??

Sjacobs146

Hi Winnie! Welcome to Breastcancer.org. Lots of women decide against taking anti-hormonals. But you should know that many women take them and have no severe side effects. Very few women post about things that are going well, they come here to vent. I am taking Arimidex, and while I have experienced some joint pain, that's about it. After roughly 3 years on it, even the joint pain is improving thanks to weight loss and regular yoga classes. I suggest trying them, and if youfind the SEs are too much, then stop, or switch to something else. Also, check out the thread called "Doing well on AIs".

Amica

I can very much relate to the posts on this thread. I'm on Letrozole/ Ibrance and I think most of my side effects are from the Letrozole because they persist even if I take a two week break from the Ibrance: extreme fatigue along with insomnia and disrupted sleep, nausea, horrible joint pain especially when I am trying to get relief by lying down, headaches, severe depression and anxiety, constipation and when I fix that with medications it often veers into diarrhea, horrible problems with dryness, whether it is my eyes, vagina, or rectal area. I go for a walk and return with a bloody rectum from the dry tissues rubbing and abrading (sorry for being so graphic.) I'm a mess and I can hardly stand it.

And my oncologist is so so dismissive. At my last appointment with her a couple of weeks ago, she was so dismissive of my pain, my severe constipation problems, and the fact that my vaginal tissue is inflamed and itchy, dry but also with a smelly discharge---she said I should see my family doctor! Like my family doctor is going to know anything about how to address side effects from cancer drugs. I hate my cancer centre so much but in Ontario, the cancer centre you go to is determined by your geographic catchment area, and I can't switch centres (i"ve tried.), unless I move.

I had one day of blessed relief from the pain when I gave in and took a Tylenol with Codeine, but that causes me instant constipation. The first time around when I had Stage II cancer the doctors had no problem prescribing hydrocodone, and now the opioids have such a bad name and reputation, no doc has even offered me a prescription. My first go round with cancer decades ago I can honestly say was pain-free, and that was because of the hydrocodone. What I wish the medical profession realized is that not everyone gets addicted. I was on hydrocodone for months at a time and I never got addicted.

I'm in despair and feel like I'm talking to a blank wall with my oncologist, and she's already my second oncologist at the same center, after I asked to be switched. Now I'm thinking it's not the individual oncologists that are the problem but the treatment approach at my cancer centre, or maybe the treatment approach in my province.

Lynn1234

Hi! I don't post often, but something came up that I thought would be important to share. I have been on xgeva/prolia for over 5 years now. This time last year I started having a pain in my right femur shaft. It showed up as a hot spot on a full body bone scan as well. Also had an MRI. The cortex was irregular and there was swelling, like a stress fracture.Went to two different Orthopedic Oncologists who both said it was probably from the xgeva, but were not certain. I was taken off of it for 6 months.In the mean time,before the follow up, my left femur shaft started hurting. Xray was taken and looked just like the right. femur shaft. At this point, they were more certain it was the Xgeva/prolia.

Because I was off of the Xgeva for 6 months, the femurs had time to remodel and heal. I am back on it, but need to follow up. I may have needed to get rods in both femurs to prevent a full fracture! this is an odd side effect of Xgeva/prolia-Atypical femur fracture. be on the look out!

If you are on Xgeva and your femur or hip starts hurting get an xray or scan right away!!!

DollyDeb

Hi Winnie13, I can say for sure I am doing better now on the Exemestane and I have been on it since early December 2018. I have had no real problems with the bone and joint aches that I did on the Anasrtozole. I have muscle spasms, but those are livable. I can take Advil and Tylenol for that and it works. I was using those every day and still felt like I had been through the ringer. I can honestly say to try anything before writing it off, at least that way you know for sure if it is worth the trade off of the added protection. Wishing you comfort and peace no matter what you do.

DollyDeb

Oh Amica, I am so sorry for the grief you are dealing with. Being told you need to "buck up" by your doc is so demoralizing. You hurt, it's real and you deserve to feel better. And I agree, the GP doc for this seems like a huge waste of time and effort. I got lucky, I have a great oncology team and they set me up with the right person. I saw a Vulva Specialist in Boston, she was wonderful. She started me on the following-maybe you can ask your doc about it? I has helped my very tender and tear prone areas to be much better.

1. betamethasone (augmented) 0.05 % ointment

Commonly known as: DIPROLENELearn more

Apply 1 application topically daily for 14 days, then 1 application every other day for 14 days, then 1 application 2 (two) times a week.

2. halobetasol 0.05 % ointment

Commonly known as: ULTRAVATELearn more

Apply 1 application topically daily for 14 days, then 1 application every other day for 14 days, then 1 application 3 (three) times a week.

3. estradiol 0.01 % (0.1 mg/gram) vaginal cream

Commonly known as: ESTRACELearn more

Place 0.5 g vaginally 2 (two) times a week. apply once daily for 7 days, then m/w/f

She deals with cancer patients and knows the specific problems we face because of or meds.

I hope you get the answers and the help you need soon. Sending much love your way.

Amica

thanks so much dollydeb---I printed your post out, and will run it by my onc. If she's not willing or interested in addressing side effects that I am having, there is supposed to be some kind of "Symptom Management" team at my Cancer Centre, that helps patients with things like pain, nausea, and other side effects, maybe they'll help. I do think it's very unprofessional of my onc to just tell me to see my family doc. The problems with my tissues are totally related to the cancer medication treatments and should be treated seriously by my oncology team, not a family practitioner. Today I dabbed some avocado oil on tissues that became sore and abraded after my walk--the frigid cold outside temps make it worse----not very scientific but I don't think it's going to hurt anything lol

Meow13

I asked my oncologist if he can tell if the anastrozole is working, he said no. If it doesn't come back I suppose you can say it is working, that is probably why the dose is the same for all sized people.

dtad

PKWGA...so sorry you are having serious side effects of the aromatase inhibitors. IMO docs should be more transparent about the potential side effects, especially the permanent ones. We need to make informed decisions about our treatments. The only way to do that is to gather as much information as possible and come to our own conclusions. Good luck to all navigating this complicated disease.

edwards750

I am so disgusted with the cavalier attitude of our doctors when it comes to side effects from the drugs. They believe we are whiners and not looking at the big picture which is the drug is apreventive measure to ward off a recurrence. Really? Okay walk a mile in our shoes. Doctors do make the worst patients.

My MO switched me from Arimidex to Tamoxifen after one year because I questioned her about Arimidex attacking the bones. I had osteopenia at the time. Duh. When I asked about SEs from Tamoxifen she pretty much dismissed my concerns. As it was I had joint pain non-stop but luckily only had to take it for the remaining 4 years. The only tests she ever had run were blood tests to see how I was dealing with the Tamoxifen.

Good grief we don’t have to be reminded we have BC but that doesn’t mean we aren’t entitled to a QOL. I disagree about seeing your GP for pain, etc that’s the MO’s job when you have cancer and in fact my MO told me to call her if I had continuous problems like for 2 weeks with Tamoxifen.

I think some doctors need to take sensitivity training courses instead of acting like charm school dropouts.

Diane

dtad

Hi everyone...I've said many times that my pet peeve is docs denying side effects of anti hormone treatment. I think they actually believe that if its not discussed it won't happen! As if its all in our heads! My MO at a major NYC university hospital did that to me. When I asked what the side effects were of aromatase inhibitors she actually told me there are none! Looking back I think that was the beginning of me looking into not taking them. Maybe if they were more upfront and willing to work with us than the compliance rate would be higher! Of course, I'm not saying they are all guilty of this, but it is a common theme on this forum. I also agree that it is the responsibility of the doc prescribing the drug to be transparent about its side effects, especially the serious ones and the permanent ones. We need to speak up for better treatment options. A 40-50 percent compliance rate is just way too high to be an effective treatment!