I'm a wreak. I haven't slept for 18 months, have had hot flashes every 45 mins (worse at night), joint pain, migraines, etc. EVERY side effect, I have it.
So I went in search of solutions and found a couple of academic papers suggesting it is OK to take up to 3 months off. Yes, it slightly decreases your cancer re-occurrence likelihood, but it doesn't change longevity.
Just wondering if there is anyone out there who has taken breaks?
Edited later to add more info:
OK everyone, Thx to Dr Google, I came across some information that has brought a lot of clarity into my life. This website allowed me to SEE the benefit of AI in my treatment: breast.predict.cam/tool. And, this YT explains how to understand the website and risks: youtube.com/watch?v=XixPPR0...
Based on my diagnosis, and the contribution to my statistical longevity AI provides, relative to the horrific QOL I'm expected to endure, I've decided to suspend taking AI. It just isn't worth it (to me). Especially when you take into consideration both the potential for injury to other organ systems due to low E2 AND the likelihood of improved cancer treatments (vaccines?) in the next 10 years, I can't see a reason to suffer any longer.
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I’m taking a break right now. Only because I’ve had progression to my stomach, so we’re waiting for some mutation tests. I feel free as a bird! It’s been 9 1/2 years and I’m hoping that I will get a bit more energy and feel human again, even for a few days or weeks. It’s important to feel like we can get our old lives back sometimes. I’m deeply grateful for all the medicines and treatments. But it sure feels good to get a little vacation from it all! Good luck to you!! I hope you feel like it does you good!
Wow. Good for you. Is exemestane the only med you are on? I’m only asking because I’m also on it along with afinitor. I’ve been using this combo for about 4 months and things have been great. Pet scan in September. I would love to give up the Afinitor and just stay on the exemestane. Btw I was suffering with insomnia and taking the hormone blocker at dinner time. I now take it in the morning and I now sleep at night. I hope this helps anyone suffering from the insomnia.
I’ve been on Afinitor with the Exemestane. I started on 10 mg Afinitor and eventually dropped to 2.5 mg. Held steady for a very long time, great labs etc. only real issue was mouth stuff, Peridex, Stanford Mouthwash #7 and an amazing DDS helped. Oncology took me off Afinitor because I had two small liver lesions a year apart (both taken care of with gamma knife radiation) and they wanted to try a “new med” but they left me off med for 9 months despite my asking to return to the Afinitor. While off Afinitor, I grew 3 new liver lesions and have had 10 rounds of gamma for those. After a major stand off with oncology I’m finally back on Afinitor and Exemestane. I’m not sure if it will hold after being off for so long but it’s definitely my combo of choice!
Magnesium helped with insomnia and I take the Exemestane and Afinitor early in the day. I put the Afinitor in plain gel caps (size 2 for my dose) that I get from Amazon to avoid oral contact.
So funny. I use the gel caps myself. I’ve never had a mouth sore. My only problem with afinitor is I’m always exhausted. I’m praying for good results. Thank you for your response.
Letrozole. I just don't see how I can function without E2. It is as if nothing in my body heals. I don't see myself being on this for 5 years as the symptoms are worsening.
I'm so sorry you are experiencing this. I had a lot of these side effects when I was on Anastrozole for 5 years when I was first diagnosed with breast cancer but have not had a lot of them on the Letrozole which I have been on for 4 years. Hoping that taking a break will help or that your doctor can switch you to a different hormone blocker with less side effects. Sending you hugs and prayers.
See how different we all are? I couldn't tolerate letrozole -- terrible joint pain -- and did better on exemestane. Which one are you on? Have you tried others?
Then fulvestrant is a SERD, also blocks hormones. I found the SERDs the absolute easiest to take.
You could look up the half life of whichever you are on, and give it time to get out of your system (double the half life), then try another one when you are clear and feeling better.
I had a month and a half break from all treatments at the start of my diagnosis...after being on Kisqali & Letrozole with Zometa and Zoladex monthly which I'd taken for around 3 months before a liver enzyme reaction.
All scans showed no progression and I've continued to remain stable after switching the Kisqali to Ibrance and retaking the other medications for the last 3 years.
I was diagnosed at 50 and the 2 hormone treatments... Letrozole & Zoladex...put me into an immediate induced menopause from which I too had all the symptoms initially!!
I started on the meds in June...that first summer was awful!! But now I find it pretty manageable....gradually the side effects have subsided, apart from occasional bone and joint pain and some tiredness at the end of the 3rd week of ibrance.
There is a view that we may not need the high doses of drugs we're given.
There is also a view that the dose should be tailored to the individual.
I do not know how you have put up with all those terrible side effects which have affected your quality of life so badly. And I'm appalled that medical staff have allowed this without giving you options before now.
I am realizing that not one of the "medical" staff has seen me walk in +8 months. While I have been describing the lack of sleep and general malaise, I think if they'd see how I move they'd have more of an understanding... Thank you for the suggestion to adjust the dose. I've already decreased my iBrance with no issues, so will look to lower the AI.
All the CDK4/6 inhibitors have stepped down doses. I have never heard of reduced dose of AIs. But confirmation of my finding that fulvestrant has fewer side effects than the AIs.
Why not get other meds? Sometimes there really is a reason. I wondered why a newly diagnosed friend was put on Verzenio immediately, instead of Ibrance or Kisqali, which usually have easier side effects. Turns out that her oncologist said that Verzenio is best for her particular mets (brain). Other times, there is not and it helps to ask.
I actually looked into the research in the link, added to my original post. FOR ME, and based on my diagnosis, it isn't worth the extra 2% longevity benefit over the next 10 years. It is also very likely we will have a "cancer vaccine" specific to our individual DNA, within that time frame, so I'm addressing the near term, torturous issues vs worrying about 10 years from now when I'll more likely be dead from something else.
It is a personal choice.
The long term health issues associated with low E2 include nearly every other organ in the body, as there are estrogen receptors in all of your cells. My life has been completely disrupted by the lack of sleep, body and joint aches, decreased cognition, weight gain, incontinence/vaginal atrophy etc. And, I'm expected to be OK with an increased risk of CVD, ALZ, Osteoporosis, colorectal cancer, etc.??? No thank you.
For some, longevity, despite the QOL costs, is the goal. For me, QOL and wellness which includes feeling rested when I rise in the morning and having good productive energy throughout the day is the goal. When I look at some of the older women in the clinic (and even "healthy" older women I see around town) they look miserable. I have no interest in adding more "sick years" to my life and would rather live a shorter life than continue to suffer for the next +5 years.
I’ve never taken a break from estrogen blockers, but I did change from Letrozole to fulvestrant when it stopped working after 6 years. I still use Evening Primrose for the hot flashes. My oncologist recommended it and the oncology pharmacist approved its use. I prefer the fulvestrant. It’s a shot once a month which means there are no pills to take. The side effects are much lighter than Letrozole and the clinical studies show that it is more effective.
Evening Primrose is a supplement you can buy and take on your own. Most doctors don’t recommend non-pharmaceuticals. Our MBC group is a wonderful resource for supplemental treatments to help ease side effects.
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3 years of bliss
Interesting read. 
Lupron
