Bottle 'o Tamoxifen

PamEP

Trying to get acclimated to tamoxifen, I think I increased the dosage too quickly (I am on no prescribed medications but this one) I took 10mg two days in a row after a bunch of days on 5mg and the SE's were awful.

Has anyone tried different dosing strategies when starting tamoxifen? And how about splitting the pills?

Wishing this were easier for all of us.

Dani444

I have been on tamoxifen for almost 3 years now. I am reading that others have brain fog and it is listed as a side effect. I am just wondering if anyone could explain what you would consider brain fog. I have felt like I have lost my critical thinking skills, can’t multitask at work as well as I used to, and simply forget things. This all started after rads and starting tamoxifen. I know I do not perform as well at work as I did before surgery and all that. I did not have chemo. I am so self conscious about this and also basically angry. I just had a particularly rough shift last night and just needed to vent about this and see if it is affecting anyone else

Beaverntx

Dani, that sounds very much like brain fog to me! Some days I feel as though my head is stuffed with cotton and thoughts or ideas simply cannot connect. Fortunately, I am retired so I can slow down and proceed carefully on those days, not a luxury you have at work. Sorry I don't have a solution to make it better. I do think sometimes increasing my water intake helps a bit.

Sampy661

Hi there.

This is an enormous thread so pardon me if my inquiry has been asked previously.

I’ll begin Tamoxifen in a matter of days and I’ve noticed some of the side effects commenters have expressed are similar to what I’ve experienced since chemotherapy rendered me menopausal or at least I have some mild menopausal like side effects.

My side effects are warm flashes when I’m trying to sleep I treat with Vitamin D and Sage Tea, dry vagina I treat with coconut oil, hip/groin/sacrum/buttock discomfort, not unlike a mild case of Greater Trochanteric Pain Syndrome and foot/arch discomfort very much like Plantar fasciitis. These issues arise in the mornings upon waking up and the evenings after working out. Fortunately my brother is a physical therapist and I’ve been able to manage my discomfort very well with specific exercises.

My medical Oncologist believes my issues are very mild and I’ve faired well considering my treatments and that they’ll reduce even further as my body becomes accustomed to the hormonal changes I’ve endured. He was sketchy regarding Tamoxifen side effects as he believes everyone is different and couldn’t elaborate whether it would enhance my current issues or if I’d have any issues at all - not much help but I suspect he’s a little frightened of me because cold capping didn’t really work that well and I tore him a new arse hole, cold capping was brutal.

So I thought I’d ask here - will beginning Tamoxifen exacerbate my chemo induced issues further or have I reached the pinnacle of potential side effects and it’s smooth sailing from here on end with just the few issues I currently have. I would appreciate anyone’s personal experience, especially if they had chemotherapy prior to taking Tamoxifen.

I’m 49, 5 foot 2ish, 52kg’s, don’t drink, former social smoker, clean eater, decent and varied exercise regime.

Thanks in advance.

Valsc

I started tamoxifen 6 weeks ago and I haven’t any side effects at all. I am post menopausal and am on Tamoxifen for 2 years due to osteoporosis before being switched to AI.

When does most SE start?

cassiecanada

Hey valscac- i am 2 years on tamoxifin and no

side effects yet- us post menopausal

woman have fewer side effects according

to my Oncologist - while some have none at all.

You may or may not have any. On the flip side,

we are at higher risk for embolism and

uterine issues- however, the percentage is

still quite small and doesnt outweigh, in most

cases, the benefits of lowering risk of cancer

recurrence/mets. That being said, i find it interesting that you will seitch the AI after 2

years . i have osteopaenia and didnt want to

take AI - still dont….

(i still havent put my stats in at bottom

and plan on finally doung that soon

Valsc

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

My BS and MO both recommended I stay on Tamoxifen for my full 5 years. They said since I was doing pretty well on it, why switch. They both also felt the increased SEs weren't worth the tiny improvement in recurrence risk. You don't HAVE to swap to an AI just because you're menopausal.

runor

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. 

Mymomsgirl

My MO said since I'm doing well on Tamoxifen then maybe I would just stay on it. Of course everytime I think maybe I'm going to get to menopause my cycle starts back up. My OB commented that I can't catch a break.

lala1

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.

Sampy661

Hello,

I've been on Tamoxifen for a little over two months and I've faired relatively well, reason being, I believe chemotherapy rendered me menopausal therefore I attribute my hot flashes and sore feet to chemo induced menopause rather than Tamoxifen - but I'm not sure.

I've tried my best scouring this thread and I've come across discussions regarding a sluggish GI, constipation etc and I'm not sure what contributed to my sluggish GI, is it the Tamoxifen, menopause, chemo?

I eventually found relief in FODMAP dietary needs which is reserved for those who suffer from IBS - a disease I've not been diagnosed with. Nothing else would work for me, not Keto, not the anti inflammatory diet, nothing except FODMAP - my GI track was stubbornly sluggish.

My question is, what's the likelihood I have to eat like this for the duration of Tamoxifen, or do you suppose my gut has sustained some “issues" due to chemotherapy? I completed chemo in August and the oncology nurses didn't really see a problem since I'm doing fine now - but my food is very restrictive - in comparison to how I was before my breast cancer diagnosis.

I want to eat like I used to, but I can't without enduring woeful bloating, horrible gas - I'll spare you the details. Before you ask, yes I exercise, yes I drink 3 litres of water a day, yes I sleep in excess of 8 hours a night. Am I still adjusting to the Tamoxifen and will things get better? Has chemo upset my GI, is this just a symptom of menopause - I MISS BRUSSEL SPROUTS!

Thanks for listening…

Salamandra

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.

Waves2Stars

Sampy, I felt like that at the beginning, too. The gas and bloating was pretty extreme. If I can stay “regular” I don’t notice it as much. The best way for me to do that is to throw a carrot and one or two stalks of celery into my mixer and pulverize it, then drink. Sometimes I add blueberries. I don’t even have to drink it every day, but at least four times a week. I get some afternoon gas from it, but it is way less than when I have constipation. I also take a high quality, as in found in the refrigerated section of the health store, probiotic a few times a week. Sugars and fructose seem to make it worse for me, thus the probiotics.

As for the cause, who can give you the definitive answer? My MO said to expect Tamoxifen side effects to be similar to taking the pill: water retention, reflux, weight gain, yeast infections, etc. I’m just glad I don’t have swollen breasts like I did on the pill. I would think chemo could cause inflammation in your GI tract, too, so maybe this will calm down once you have had a good chance to heal. Also, maybe think about having your gall bladder checked at some point.

I hope you feel some relief soon! Your poor body has been through a lot!

Sampy661

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