symptoms worsening... anyone else have this on Arimidex?

On Arimidex Four Years and Suffering From Severe Bouts of Diarrhea

I began taking Arimidex in March 2015 and my oncologist said I would be on it for 5 years. Well, over the last year and a half I've suffered from terrible bouts of diarrhea. It's not a daily happening. Sometimes I suffer for 3 days and then the symptoms clear up. Then, when I least expect it, the diarrhea rears its ugly head. Again, there's no specific timetable. The foods I eat have not changed in any way over the years of being on this medication, so I'm concerned. When I talked to her about this, she trivialized the diarrhea and said the benefits far outweighed the side effects. Next year will be my fifth year and already she's talking about taking this med for another additional 5 years.

Is there anyone out there who opted out of another 5 years and have there been any concerns of cancer returning once we stop taking this pill? Is there anyone out there who stopped this medication during the 4th year? Can anyone recommend a homeopathic or naturopathic alternative?

Also, I started out with osteoporosis and it is now classified as severe. My oncologist wanted me to started Fossamax and I said "NO" loud and clear. She was not happy with my decision but makes no more mention about it. Any feedback on these side effects/issues?

I had bad nausea that started around my Lupron injections (which I had for 3 months before starting anastrozole), it took doctors a few months to figure it out but I went on a PPI (pantoprazole, I think) and that seems to have stabilized it. I had an endoscopy that confirmed gastritis. GI doc think we can try to taper off the medication in 6 months or so, which was encouraging as I don't want to be on one for five years. After PPI she'll taper me down using over the counter meds like Prilosec. Sounds a lot like CindyNY's experience!

Can you stand to hear one more diarrhea story? Arimidex- severe diarrhea. Stopped for couple weeks. Started letrozole. More of the same. MO says “diarrhea is not a common SE. Go to your gastroenterologist. “. Stopped Letrozole. Diahrreah stops. Restart letrozole minus calcium and D supplements. Diarrhea resumes. It’s the freaking drug! MO says he can put me on tam knowing fully well that I have a thickened uterine lining and have had uterine biopsy( not fun!) I will not take tam due to risk of uterine C

wallan Your story resonates with me, for sure. I also have #1 and #2 breast cancer in my history, as you can see on my signature.

What the social worker pointed out sounds really good to think about. Going around Fake-Happy and Pretend Fine is exhausting. And, you pay a price for doing that, of course. Yes, those other people in our lives do NOT know what this really feels like. So, they say the wrong thing partly out of ignorance, and somewhat out of wishful thinking.

You said: "People at work say breast cancer doesn't kill anyone anymore." Oh, dear! I hate to rock their world, but they should read some of the parts of this forum if they actually think that!

I do think we have to be honest, with ourselves, and with our close people in our lives, and admit in a safe place how scared, angry, etc. we are.

Is your NP or PCP someone to talk to about depression? Sometimes we need chemical assistance to turn a corner, when we're in a negative self-talk spiral. For acute depression, sometimes we need BOTH the talk therapy guidance to re-train, and also medical/chemical assistance. There is actual re-wiring of synapses and learned behavior to unlearn, and chemical help/anti-depressants can sometimes put us in a better frame of mind to manage that retraining to build a habit for healthier thoughts and outlooks.

I don't love the sentence in your post about the social worker saying that "stress is bad for recurrence," because that sounds worrisomely as though she is implying that there's a magic answer for preventing cancer, and as though a stress-free life will prevent further problems. It also smacks a bit of 'blame the victim,' and seems completely inappropriate for her to have said. My oncologist has said that evidence is not clear about that being the case at all. People with very relaxed and stress-free lives also get cancer, of course! The list of possible contributing factors and their relative importance and interactions with our immune systems (+ genetics + environment, etc.) is very complex. A social worker is not a medical professional who knows about cancer, even if she is good at helping a person navigate the mental health stuff surrounding it. I don't think it's appropriate for a mental health provider to throw out causation assertions that can turn into worry-bombs in your head. I think her guidance should be reserved for supporting you as you manage your fear, anger, frustration, stress, etc., not speculate about your cancer in any way. That's my two cents on Boundaries, Staying In One's Own Lane, and Scope of Practice. Ahem and Grrr.

What you say about admitting that you're walking around with a more cheerful attitude than reflects your inner true feelings is so important. I have very dear people in my life who support me, and I have safe places to tell people the truth about my fears and anxiety about my diagnosis. But, there's a bit of Friend Fatigue that sets in, so we can't REALLY go around sharing EVERYTHING about how we really feel, or we drive those people away! So, we each really have to find our own magic balance of self-talk and self-care, combined with sharing with others, and getting guidance/therapy/medication if needed, and exercise, and also some happy things to look forward to, or whatever it is that provides us a stable-enough mental health platform to be functional and Living Our Life Despite Unknowns!

My own personal magical formula includes prioritizing daily exercise, and scheduling Fun Units. Examples: a concert, a phone call with someone I'm close to, a walk whether alone or with DH or with a friend or sister, a bike ride, a strawberry milkshake, a hike, a movie, a fun meal, music playing or listening, a distracting and fun show to stream, etc. Whatever floats your boat; everyone's list will be different, of course. I try to schedule/plan for one of these things per week. This gives me something to look forward to. The planning and scheduling of Fun Units makes me feel that I'm in the driver's seat, after so much stuff I haven't been in control of.

I just read Graciez5, sometimes I read a post and feel like I could have written it. I too had early detection, small size .6MM , low grade diagnosis. It will be 3 years this fall from diagnosis. Lumpectomy and accelerated partial rads. Since it was ER/PR+ HER2- and I am post menopause, I went on Aromatase very reluctantly. I did read and read at first, and retreated from reading for the last year. Now I am experiencing multiple issues, and question how much is from hormone therapy. I seriously like my MO but she does down play the SEs. I have lost at least 1/3 of my hair, significant bone loss and right now am on a third UTI and feeling extremely lightheaded. MO was talking about switching to Tamoxifen due to bone loss, but nothing I read sounds like it will be any better. Just not sure about continuing hormone therapy...

Wallan, I did not look into possible issues taking melatonin with depression, as they weren't in play for DH. Maybe ask your doc? Wallycat, DH did try DGL, but it didn't seem to help. He had been on a PPI, but dropped it when he read about concerns with long term use. I had not heard of using melatonin either until I did a deep dive on GERD treatments (which is also how I found the DGL), but if you google GERD and melatonin, there's a lot of good links.

Here's the first one that pops up: Melatonin eases GERD symptoms, studies show (https://www.pharmacytoday.org/article/S1042-0991(16)30687-9/fulltext)

Here's a recent study: Melatonin in Prevention of the Sequence from Reflux Esophagitis to Barrett's Esophagus and Esophageal Adenocarcinoma: Experimental and Clinical Perspectives (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6073539/)

vitamin D3 deficiency is related to depression, I've been taking a calcium supplement with vitamin D3, perhaps that is helping me. I am depressed at times, but I do not have depression. My older son has depression. Seeing a therapist and taking anti depressants has helped him immensely.