Bottle o Tamoxifen
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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
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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.
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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.
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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.
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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.
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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!
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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.
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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!
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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 over0 -
Well, I'm back on this thread after a year away...I have developed hypothyroid SEs...has anyone else had thyroid SEs??? My dermatologist diagnosed this as I have white patches of impetigo on my neck! ???TT
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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.
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I’m curious which generics you all are using and whether you’ve switched due to SEs? I’ve been on Mayne but was told by my pharmacist that they switched formulas (new NDC number). In the past I had bad SEs with Mylan.
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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
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Hello. I had my double mastectomy in June 2022, (Estro +, Prog + HER -), no chemo or radiation was needed, but started Tamoxifen in July 2022. Had Tram Flap breast reconstruction in Dec 2022. I'm 51 and still have my mensural cycles every month. I understand that the Tamoxifen is supposed to stop the estrogen production and put me in menopause. I've asked my oncologist many times on why I have to take this pill when I no longer have breasts and that one of the side effects is ovarian cancer! She's explained it it's the best treatment but I have my doubts. My mental state of mind has completely changed. Anxiety, depression with crying spells and feel this is the beginning to the end. Since my breast cancer diagnosis, I was medication free. Now I am bombarded with all the pills in my bathroom from vitamin supplements (black cohosh, Vit D....) anti-depressants, 3 medications and the one I fear the most, Tamoxifen. Sometimes I wonder if it's best I stop it. Can anyone explain to me why Tamoxifen is so important for the doctors to prescribe?????
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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.
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Seabreaze, Tamoxifen is prescribed to help prevent bc from coming back anywhere in your body. Here is a link which explains how it works.
https://www.breastcancer.org/treatment/hormonal-therapy/tamoxifen
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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.
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Betty,
No.. I don't think you are crazy at all. We are all different, and with breast cancer, there is no one right answer. I finished my last Tamoxifen this past September. I could have continued, but for my type of cancer, there was no statistical advantage to taking it longer. And while I am a different person than 5 years ago having gone through menopause while on it, for me, going off was good. I had lots of muscle aches and pulls and swelling in the legs from it. While I still have some aches, many of the other things I suffered has improved or gone away.
Has splitting the pill for a lower dose changed anything for you? And did you have anything else besides the mood swings in the beginning? I am always curious about people's journeys, espeically with Tamoxifen.
Isabel
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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 🎀
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hello everyone,
I start 5 mg daily of tamoxifen and was wondering if anyone has taken low dose tamoxife and what side effects they experienced?
Thank!
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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
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SadieSue09: I had hair loss before my cancer and saw a dermatologist who specialized in women's hair loss. He proscribed taking 1/4 of a 2.5 mg Minoxidil pill. My hair has grown back. Now that I'm on Tamoxifen, I don't know if the hair loss will come back, but I'm staying on Minoxidil.
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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.
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Hello, all! I've been on Tamoxifen since December 2023. It's my third line after Ibrance and Verzenio (both with Femara). I had progression after 5 years on Ibrance, so switched to Verzenio. After a year on that, I had more progression. Oncologist wanted me to start a clinical trial, but I wasn't willing to give up my winter in Florida… so she put me on Tamoxifen until we could decide on a trial in early Spring 2024. Lo and behold, on my January 2024 PET scan, I showed "diminished or resolved" on all tumor sites (vertebrae and pelvis)! Since we were both excited about those results, we decided to not rock the boat. My next scan is in July…
Anyone else here taking only Tamoxifen for Stage 4? I was diagnosed de novo with one bone met (primary was removed before Ibrance was started), and it's been seven years now. I'm feeling fine, no side effects to speak of, so I would love to keep Tamoxifen - as long as it keeps working!!
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