Hi Serinity,I am new to Tamoxin(1 week) after rt mastectomy with clear margins and 4 neg sentinel nodes for last4-5 days I feel bloated and uneasy in lower abdomin.I have ahx of gastric reflux occasionally over the years but I have not felt it was acting up.Today I got an above the L eye headache while I slept I am not prone to headaches but my sinuses do drip and get congested often .I too do not know the cause of my intestinal distress but think it may be the Tamoxin.Ihope our side effects don't make us want to stop this med
I've had IBS - constipation my whole life. Before being diagnosed with Infiltrating Ductile Carcinoma Stage 1 Grade 2, lumpectomy, chemo, and radiation, I had my IBS fairly under control. I just finished year 4 of Tamoxifen and I quit a week ago because I was to my breaking point with side effects. I pretty much had them all, joint pain, low libido, weight gain, hot flashes, waking up at 3 a.m. But what pushed me over the edge was the extreme dehydration (I was drinking 10-12 glasses a day of water plus my green tea and still dying of thirst!) and the digestion issues (I was in constant pain and bloating, felt like I was allergic to all food). I tried everything; peppermint pills, align (and then some other brands of probiotics), giving up meat, the list goes on. I'm already gluten free and dairy free because of my IBS so that didn't help either. A week later and my digestion is so much better. I worry because my oncologist wants me on for ten years, but there's no way. And he doesn't seem to care too much about my side effects. I mean he cares but I just have to deal basically. I hope my decision is the correct one.
After a few months of being on Tamoxifen I started to experience bloating, constipation, digestive issues, and feeling like my whole metobolism has slowed to a hault. I felt like I had become allergic to food! Of course I was told that was all normal - which it wasn't. I stopped taking Tamoxifen after 5 years, but the symptoms continued to get worse, not better.
I was FINALLY diagnosed and wanted to share what I had learned! There's a fairly new autoimmune condition called Mast Cell Activation Syndrome. The doctor that diagnosed this also told me that Tamoxifen is now "implicated" in causing this and he has personally seen several cases. I'm being treated at Brigham and Women's Hospital in Boston. The link below is the first blog in a three part series that got me starting to think this is what I had. Thought I'd share for those that are interested:
Hope others find this helpful
I had the same gut problem on Tamoxifen. Yep, felt like I ate the sun! Well said! My doc also just was not listeniing. So I did some research on my own, and found that Tamoxifen can cause an imbalance of yeast in the gut. It suggested taking a supplement like Culturel or Align. It helps a lot!
I have seen here that some ladies have had issues if lactose intolerant as it can be included in the tablet ingredients itself. Others have found that changing the brand can help, if you haven't already.
I was put on Tamoxifen for stage 4 breast cancer. It's been not quite a year, and my guts are on fire! I feel like I ate the sun sometimes. Bloated, feels like gas is trapped, constant battle with constipation. I know it's the Tamoxifen, because I didn't take it for a week once, and my guts returned to normal. I try to tell the doctor this, and they won't listen. I know my body better than those doctors do, and I'm certain it's caused from the Tamoxifen.
im so glad I spotted this thread. I've been on tamoxifen since October last year and within weeks I had terrible bloating, indigestion and trapped wind. This has been followed by episodes of constipation and then the last 10 days I've had terrible cramps and what can only be described as IBS symptoms. I've never had any issues in the past so this has all been an unwanted side effect in my mind having seen this post.
Ive had peppermint capsules from the doctors but that's it. If I'd realised it may be down to the tamoxifen I'd have pushed more for help or guidance.
Peppermint pills, Yakut, cutting out majority of dairy, caffeine and roughage seems to have helped for now but this is going to be a long four years at this rate!!
Had to respond to your post!
I was treated at Dana Farber/Brigham and Womens too. I'd had Stage 1, grade 1, lumpectomy with nothing in the nodes, and radiation. I had never had digestive issues until I started tamoxifen - and everytime I questioned the side effects I was told "they're normal". I stopped taking tamoxifen after 4 years (waited WAY too long, but didn't want to stop something that could potentially prevent recurrence).
Finally got serious about treating the digestive issues (they were REALLY bad). Went for every test you can think of (endoscopy, colonoscopy, MRIs, etc) and was told nothing was wrong. Like you, I completely stopped eating carbs and felt better, but not cured. I tried the FODMAP diet, which worked for a while, but didn't really stick, and was also treated with Rifaximin for SIBO (even though my test results were negative for SIBO), which same thing - felt better for a bit, but it didn't really cure everyting.
So, I'm still making my way through this process. Latest thought (working with an amazing functional medicine practioner and a great nutritionist), is that I'm reacting to both high oxacalate levels in food and potenially "high mold" foods (which doesn't meant moldy foods, but foods that contain high levels of mold even though they are fresh . I am 100% convinced that this was caused by the tamoxifen, and because I didn't complain loud enough (and when I did was told the symptoms were just normal side effects) I continued on it for too long and did substantial damage to my gut. I would love to hear from anyone that is struggling with the same issue!
I have now been told to stop tamoxifen due to nausea, indegestion etc
But just for info I use Slippery Elm to ease gastric cramps, inflammation, spasms, this has really helped me before starting Tam.
It make a soothing slippery lining on gut.
I see a herbalist to help, she makes capsules for me as don't like powder.
I was getting dreadful spasms which now stopped.
I also got dreadful Thrush, pharmacist told me Tamoxifen does affect all ghe good bacteria in our bodies, I take the good bacteria stuff bit my body still overwhelmed with Tamoxifen.
I certainly cannot live so poorly, I was heaving and retching when laid down, felt absolutely worn out and depressed.
Whithin three days no nausea, indegestion , thrush going and feel much better
IBS and painful, painful daily gas/intestinal issues since starting Tamoxifen 2 years ago. Thank you so much for posting this topic and for the research - it has been really difficult to find information on this side effect and my medical oncologist claims to have never heard of intestinal issues and gas with Tamoxifen. I have never had these issues before Tamoxifen and as a personal test I stopped Tamoxifen for 2 months. Within days of stopping the intestinal issues completely stopped, and then started again the first week I began taking Tamoxifen again. I will happily try avoiding carbs - thanks for the tip. Anything to get away from the daily constant pain that sometimes keeps me from being able to exercise as hard as I would like. It has been remarkably frustrating being dismissed by the doctors who just tell me to take stool softeners. I respect my doctor's knowledge but I also respect the knowledge from my peers who share their experiences with Tamoxifen side effects. Many thanks!
That is really interesting, that it made such a difference to your daughter. I have to be honest, I am very new to FODMAP, having found out about it a few months ago, and I haven't yet taken the plunge and started the major work I know is involved ( of course I've downloaded the app though lol!) but I do feel heartened reading the results it has had for your daughter. I already know I am very intolerant to garlic, onions and raw peppers....but oddly if they are well cooked they are ok? I am fairly sure there are others things too that are setting me off , and I MUST get on with it.
Hi everyone, Charys is right about FODMAP, my daughter went to see a dietician at Queens Medical Centre Hopsital in Nottingham as they prefer to try this before surgery or examination procedures. I was sceptical but WOW it has worked. It is hard work as you cut out loads for 6-8 weeks but the. Reintroduce a food item at a time, if you react you cut the whole food group out and go FODMAP for 3 days and try another. Turned out Rebecca was intolerant to garlic and gluten.
she was asked by the dietician has anything stressful happened around the time 2 years ago and she said well - my dad had stage 3 bowel cancer and then mum got breast cancer so yes a bit stressful.
She he is doing great now as long as she cuts out the food which starts it off.
there are loads of recipes on line and we just use garlic infused oil in cooking like spat Bol and you wouldn't know there was no actual garlic in
i entirely sympathise with you, mine is still bad and I'm on a tamoxifen break!! there is also something called the ' low FODMAP' diet. If you look up online it will give the details, it is the original research by Monash University into foods that can trigger or make IBS worse. There are even apps for your phone or iPad too.
Ask him if a course of metoclopromide might help with the sickness if that's still a problem, Lansopraszole tends to be more affective than opmeprazole, but you might have develoved a histamine intolorance, in which case Ranatadine (Zantac) might be more effective.
Maybe a short course of Tranaxamic Acid might help if it only occurs around your menstrual cycle. Ask him about it next ime you visit
Try getting an RX for VSL3 ,needs to be kept refridgerated, but is one of the best probiotics around, you can buy it otc but it is expensive. Mebeverine might help with the IBS and bloating pain, or maybe Colefac. Peppermint oil only works for a few people. Imodium plus comfort with the simeticone is ususally good for bloating and cramping pain and reduces stool frequency. Do check with your DR, Pharmacist or specialist first though. Good luck
Thank you for your help! I have been on Tamoxifen as a preventative measure for 7 months and I have been having terrible IBS especially around my period. Happened right after I started taking it and my doctor said he had never heard of this happening. I am going to try to lower carbs as well and see if that helps.
Snap.......a lifetime IBS sufferer here, but generally coping fine with it and mostly under control. It's gone into over drive with tamoxifen ( 4 weeks on it now); huge amounts of wind, bloated stomach and bad bowel pain, 'going' hugely more than I used to .....you get the idea. I saw somewhere else about trying probiotics to see if that helps, so that is my next port of call. I would be interested to hear what they suggest for you.
I posted about stomach cramps a few days ago. I started Tamoxifen 2 weeks ago and after 4 days had terrible stomach cramps dashing to the loo and sometimes sick. Always around 5am. It made me feel tired and without energy all day. After a week I went to the GP and she said try stopping it. Within 2 days no symptoms at all! So a definite link. I am waiting to hear what they'll suggest next.
I too had excoriating IBS while on Tamoxifen and could find nothing about it on the web or from the nurses or doctors at the Dana Farber here in Boston, which is considered one of the finest cancer hospitals in the world. Go figure. That was six years ago, and I still see very little posted on the web about this common side effect of Tamoxifen. So I'm posting my experience on a number of boards in hopes of getting the word? Here is my experience and what I learned from it.
I have always suffered from IBS, but three months on Tamoxifen pushed it through the roof! What had been a chronic, manageable issue had become acute. I hit the web and found a promising description of Bacterial Overgrowth of the small gut. Stopped eating carbs -- my pain stopped by the end of first day.
After more research I discovered that Tamoxifen floods your gut with estrogen, just like when you are pregnant. Estrogen in your gut slows your digestion down so you can absorb more nutrician for your baby. And since normally your small gut is ALWAYS moving to push the bacteria in your food through quickly, making your small gut too slow can lead to the bad bacteria multiplying. Most of those bad bacteria eat carbs and create huge gas which leads to terrible IBS. So cutting off their carb supply means no more gas and pain.
I stopped the tamoxifen (I'd had stage 1, grade 1 lobular -- clean margin lumpectomy, nothing in nodes, low risk). After a a diagnosis of bacterial overgrow and a year of no carbs ( I lost too much weight believe it or not) I was working my way though useless antibiotics because the big gun I needed (Xifaxan 550mg) was $3,000 for a full dosage and BC/BS wouldn't cover it until I'd tried the cheaper antibiotics. Then I got a bag stomach flu which triggered a volvulus (full twisting of the gut) which is about 1,000x more painful than childbirth plus life threatening. Rushed to hospital in ambulance, gut untwisted on its own suddenly, many hours later, I was allowed to go home and meet a surgeon the next day. Had the surgery to correct a previously undiagnosed birth defect and finally got the Xifaxan to fix my bacterial overgrowth.
Turns out one of the main underlying cause of my chronic IBS was a partially mal rotated small bowel. This is a very common, undiagnosed birth defect. The much improved imaging we now have is making the diagnosis more common. A fully mal rotated small bowel is the birth defect that causes newborns to be rushed into surgery after projectile vomiting their first meal. My partially mal rotated small bowel created a narrowing in my gut which slowed my digestion down and lead to gas and cramping. The tamoxifen slowed it down even further, leading to the bacterial overgrowth and the volvulus.
And now my IBS is practically gone! I still have a cranky gut, which does cramp and spasm on occasion, but basically it's better than it has ever been and what issues I do have are totally manageable.
So Tamoxifen can easily trigger serious IBS in women taking this drug. Doctors and nurses take notice!! Anyone suffering can stop carbs for a day to see if carb sensitive bacterial overgrowth might be the culprit. FYI, even after a year of no carbs and an operation to fix the narrowing in my gut, I STILL needed the Xifaxan to kill the bacterial overgrowth. It wasn't until after a full course of Xifaxen that I was finally able to eat carbs again without pain.
To any woman struggling with IBS while on Tamoxifen, keep trying to get the help you need! The only thing more complicated than your gut is your brain, so don't get discouraged if the problem is multilayered. Good luck!!
I first took Tamoxifen in April and for the first month I had terrible bloating and indigestion, it gradually got better, however, I am permanently on Omprazole as I take tablets for arthritis that cause stomach problems. This last month or so, I have had constant indigestion - heartburn or worst of all terrible bloating. I had some fantasy that I had an ovarian cyst that was pressing on my stomach. But reading this I think it is probably the Tamoxifen. And, of course, I have put on a lot of weight since taking the tablets which does not help at all. I am going on a Weight Watchers Diet next week, so I am hoping that will help me.
However, it is great to read about Acidopholus - I will get some and try that as well.
You think once your treatment is over that it is onwards and upwards but I feel like I have aged 10 years, have constant digestive problems, tiredness and sore breasts. When is it all going to end?
Thanku for ur response and advice and yes I will ask one of the team the question.
Good luck with ur change of brand and I do hope it relieves ur SEs.
Probably someone medically qualified should answer your question but I don't think it would be a problem taking acidophilus while on chemo because it is just what you find in live yoghurt or Yakult/Actimel. Anyway it is probably worth checking with someone qualified just in case.
Good luck with everything.
I have just changed from CP Pharmaceutical's Tamoxifen to APS brand (on another thread some ladies said this was better). I will report back when I have taken it for a couple of weeks!
Hi Maude, LindaH and everyone
Have just read your thread and I too have been feeling queasy and bloated on Tamoxifen (been on it since dx on 1st Dec).
Really interested in the acidopholus you've both recommended, but can you take this while on chemo? - I'm due to start FEC on 21st Jan.
Many thanks ladies for this interesting thread
Just wanted to let you know that I bought some acidopholus after you suggested it and it has improved the symptoms of queasiness I was getting from the Tamoxifen - my stomach feels a lot more settled. I couldn't get to Holland and Barrett so I bought some from Boots, they were a bit more expensive but I am glad I got them now.
I ended up having to go back to gp today as pain was so bad this morning it scared me! He has also given me an anti-spasmodic which thankfully has made things a lot better. He said my symptoms sound like irritable bowel syndrome and to see how I go with these meds and go back in a couple of weeks.
I've been on Tamox almost three years now. I had very few side effects, just irregular periods and the odd hot flush until this year. Now all hell seems to have let loose - I had a monster heavy period then had to have a hysteroscopy and d&c - this left me anaemic so I had to take iron for 3 months. Thankfully that has corrected but now have more hot flushes and this terrible digestion. If it's the Tamox that's causing it I'm not sure I can put up with this for another two years. Hoping that it's just a one off and will be sorted by these meds.
I started Tamoxifen July 2007. The first few months were awful, my stomach was in turmoil all the time and indigestion like no body's business.
I also found that certain foods didn't taste like they used to and even though I was hardly eating - because I couldn't taste anything except spices - my stomach was still bloating, so I tried Acidophilus (Aci what I hear you call !! ) well, it's a stronger form of the good bacteria like you find in yogurt drinks, but it has millions more than in yogurt drinks, so I take one everyday and the bloating stopped within days and I feel fine now.
I bought them at Holland & Barrett about Â£6 for 100 capsules.
I was also given Omeprazole, but I only take one when I need them because they upset my stomach.
I do still get a little heart burn, but nowhere near as bad as when I first started on Tamoxifen.
The symptoms do lessen with time, so it does get better.
I also seem to be having almost constant digestive problems . But it may not be tamoxifen! I had tam + Zoladex for two years and since last year have just been on tam with nasty side effects like painful breasts and now this bloating, pain and flatulence ( not nice!)
I am going to try enteric coated peppermint oil capsules before I go to GP because I dread another raft of tests having had to have investigations for thickening of endometrium last year.
Hope the omeprazole works. How long have you been on tamoxifen?
i was wondering whether anyone has experienced digestive problems whilst on tamoxifen?
Over the last few months I've been a bit more prone to indigestion, bloating etc. I started to feel a bit sick when I took the tab in the morning so now take after dinner in the evening. For the last few days I've had terrible indigestion and abdominal cramps and nothing seems to help. The discomfort is more or less constant at the moment. I went to the GP and she says everything feels ok and has given me omeprazole to reduce the acid. On checking the side effects she said the Tamox can cause gastrointestinal disturbances but it wasn't specific what exactly they are.
It would be helpful to hear of others' experiences.