Bottle o Tamoxifen

my MO has indicated me switching to AI in 2 years. But I like the no SE of Tamoxifen. I was worried about having SE many others have experienced. So relieved. At least now

Lala1, I think that is wise and honest counsel. I am in the same situation. No improvement from an AI that I was willing to mess around with potentially worse side effects.  I will be done tamox in August 2022. I hope. Kind of excited. Kind of scared too. I know that's stupid. 

runor- Not stupid at all. Tamoxifen became a sort of security blanket for me. At 5 years I took the BCI test and found I got no benefit from continuing so my MO and BS both said time to stop and I panicked! My MO suggested I treat it like AA and do it one day at a time. He gave me a 30 day supply and told me to take it home, put it with my supplements I take every day but to just not take that one pill. It really was half scary and half fun! But with each day that went by that I didn't take it, I became more comfortable in all the other ways I was trying to keep myself healthy. My MO reminded me that eating healthy, exercising daily and keeping a healthy weight actually gave me almost as much recurrence risk reduction as Tamoxifen. So that's where I turned my focus. And one day I realized I hadn't thought about Tamoxifen in weeks....so I threw it away.

I had terrible acid reflex starting hormonal treatment. I had no idea gas could be like that. I treated it with prescription strength PPIs. It did eventually get better - I don't remember exactly how long but definitely a lot more than two months.

OTOH I had other tamoxifen side effects that never did get better.

I think it's not really possible to know except by letting it play out a while longer (and maybe doing some experimenting with the drugs), but if you haven't spoken to a doctor about possible help with symptom relief, it seems like it's at least worth a try.

Salamadra - Initially I did have acid reflux actually, long after chemotherapy ended which subsided with medication and hasn't returned since. I have discussed my issues with my GP and the oncology nurses, they feel since my blood tests came back within the healthy range they surmised I've developed food sensitivities. They couldn't guarantee I'd overcome them with time, they're not convinced it's a side effect from tamoxifen either, symptoms seemed to have escalated while on Tamoxifen I feel.

Initially I was treating constipation/diarrhoea with medication but quickly realised these over the counter medications were not a long term solution so I endeavoured finding my own solution which was FODMAP.

Waves2Stars - This is the thing, I can't eat celery anymore, it has mannitol, a substance the body converts into sugar that bloats me to uncomfortable proportions, blue berries are full of fructan, even small doses of fructans will send me into a downward spiral really quickly. Carrots on the other hand, I can eat to my hearts content. These are all foods I could devour without issue previously.

I've managed my symptoms by very careful food choices, I think steel cut oats has been a life saver but it's disheartening to have to avoid eating out, the other day I went to a food court at a shopping centre and brought my own cut lunch, like a peanut - incidentally, peanuts I can eat since they're low FODMAP. I swear people were looking at me

I may have to wait it out, I like the thought of having my gall bladder checked, my mother had gallstones so it has piqued my interest. Maybe chemo is the culprit, I hope these food sensitivities pass, in any event it's encouraging to read Tamoxifen is unlikely the cause. Thanks for your input guys, much appreciated, rant over

Hey trmtab,

I don't think it's the same thing but I had some off thyroid numbers on an unrelated blood test and when they followed up, they found antibodies that diagnosed me for Hashimoto's. But apparently that's something that I'd have had since birth that just isn't caught until it starts impacting numbers. Since then my thyroid numbers have gone back to normal and I'm just supposed to have regular follow-up testing.

I was feeling some fatigue and energy issues. The doc said she didn't think the thyroid issues could explain that (based on how close they were to normal), but based on some research I did start taking selenium and inositol supplements. I am feeling much better now, but I honestly don't know what to credit for that. I think it's also possible my body was just dealing with a heavy viral load and I've cleared it. Inositol and selenium are cheap enough that I think I will continue with them for now anyway.

Hi sg751,

I’m currently taking pills manufactured by Mayne. In the past I’ve used a different generic but can’t remember the name. All throughout my treatment though I’ve always had the same side effects-stomach upset, weight gain/inability to loose weight, thickened lining, dry skin and eyes, and being tired. I’ve got 1 yr and 2 months to go and can’t wait to get off this stuff

Hi Betty, congrats on 10 years! I was on Tamoxifen for 8 years and handled it fairly well. Towards the end I was getting some neuropathy (pins and needles in my feet) and I felt it might be the T. I also was excited but nervous to not take anything. Then, My MO encouraged me to try two years of an AI. I took a break between them, longer than intended maybe because I was so scared of the side effects of the AI, but actually it's been fine. So, perhaps, you could ask your MO about taking the AI for a couple of years, if you are in menopause. You are a little young so you'd have to make sure you actually are in menopause. I take Arimidex. I only have on more year so will have to decide whether to stop next year or not. 2022 was 10 years for me.

Hi all, I have been on tamoxifen for 2 1/2 years. I am 56 and still trying to reach menopause. My last period was back in September and I’m hoping to make it a full year this coming September. I wanted to ask about possible side effects of tamoxifen. Since I’ve been taking it, I’ve had very fast gum recession to the point where I may have to do some gum grafting. I also have had oral hygiene issues even though I brush, floss and use a water pik daily. The other thing I noticed recently was extra mucus in my right eye every morning and very dry eyes during the day.

Are any of you experiencing these side effects? Or is this just what happens during menopause?

By the way, I am only taking 5 mg daily.

Thank you.

thank you for your reply. Sorry it’s taken me so long to reply, I do t get a notification. Yes, everyone is different. I’m glad to hear you’re feeling better off the tamoxifen. The only thing I’ve notice since splitting in half is that I seem much more tired than usual- could be my imagination. Continued good health to you 🎀

Hi Sheila

I did low dose tamoxifen...as started (and now have stopped) taking only 1/2 a pill and then moving to a full pill everyother day until finally a full pill. Others told me that the gradual increase helped with SEs and I believe it did.

I moved to Tamox from Arimedex which gave me horrible SEs, major loss in bone density...my only real SE from Tamox was weight gain. Still working on getting that under control. TT

PetuniasNanny: I was on letrozole but the joint pain side effects were debilitating. My knees and lower back were hurting so much that I couldn't get up from sitting and it hurt constantly when I walked. I switched to Tamoxifen 20 mg for a month and then went off because I was having 3-4 unbearable calf, toe, and thigh cramps every night. I had an electrolyte test and my magnesium and potassium are in the normal range but my sodium is low. Doc recommended that I take 200mg of Gabapentin at night and drink some Gatorade or Pedialyte. I am doing a little research before I go back to Tamoxifen. I'm truly afraid of the side effects.