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tamoxifen and digestive problems

61 REPLIES 61
scout1919
Member

Re: tamoxifen and digestive problems

If I’m put back on the Tamoxifen I will try and take it in the evening.

scout1919
Member

Re: tamoxifen and digestive problems

Hi Megan,

thanks! I had pneumonia this past winter and COVID in the spring so I was assuming that the shortness of breath was related to those illnesses. I also had severe constipation. I started spotting a week and a half ago and my oncologist took me off the tamoxifen. I am having an ultrasound this Thursday.

 

a few days after stopping the Tamoxifen I feel my breathing is better and I’m not as constipated. I’ve only been o  Tamoxifen for about a year.

MeganL
Member

Re: tamoxifen and digestive problems

Hi scout1919, 

How is your gynae checkup? 

I have been on tamoxifen for 3 yrs 3 mths, I still have shortness of breath everyday. N of cos constipation. Did u have any breast reconstruction(TRAM) being done?

My hair is abit thinner now after tamoxifen (I didn't have chemo so definitely is tam, I did chg brand of tamoxifen not to lose too much hair as 1 of the brand is really bad. But got eczema with another new brand).

 

MandyND
Member

Re: tamoxifen and digestive problems

Do you take it on an empty stomach? I've only been on it a week and my digestive system is a mess. I've never had reflux, GERD, and constipation. I'm a vegetarian and the clinical team was like take GasX and don't eat beans or tomatoes. I'm going to try taking it tonight rather than morning. 

Sweetpolly
Member

Re: tamoxifen and digestive problems

Hi I too take 2g of Prilosec prescription and can take 40mg to help digestion problems.blessings to all of you fighting this battle. Love and hugs!  Going to get my mammogram this month and praying it is negative. It will be 4 yrs for me. God  is good!  

Sweetpolly
Member

Re: tamoxifen and digestive problems

Hi I too take Tamoxifen at bedtime. I have been on it for 2 1/2 years. It does decrease symptoms I think when taken at bedtime. 

scout1919
Member

Re: tamoxifen and digestive problems

I have been on Tamoxifen for 12 months. I definitely am constipated and do have shortness of breath. I was not aware that it could cause these side effects. I just had some slight spotting for about 3 days, I am 60 and have stopped having periods about 7 years ago. My oncologist advised me to stop taking it and get an obgyn exam. I’ve also noticed my hair falling out.

Sweetpolly
Member

Re: tamoxifen and digestive problems

Hi, I am on Tamoxifen and found that if taken before bed side effects are less severe . Less hot flashes, stomach problems etc. I hope this helps you. I also started taking a probiotic daily. Hugs 🤗 

deamo5339
Member

Re: tamoxifen and digestive problems

YES! Very bad indigestion. The acid was coming up into my throat and it was bloody red. I am only taking 5mg now a day and feel better. 

lpjack
Member

Re: tamoxifen and digestive problems

Yes , I was diagnosed with BC-DCIS at 61 . I started taking Tamoxifen two months after my surgery. I’m now experiencing diarrhea and bloating for the last two months. The Oncolgist said it’s not from the Tamoxifen. Are there any suggestions as Gia as other meds or dietary remedies to remain on Tamoxifen? Oh I fail to mention I am also losing weight. 

elizabethkb
Member

Re: tamoxifen and digestive problems

Just read your concerns re tamoxifen. I too have been suffering from terrible wind - worse at night if I’m lying down, and shortness of breath. In fact, on the leaflet that accompanies my packet of tamoxifen I actually tick all boxes re the side effects! I’ve been taking it for 18months now. I can’t say any of them have got any better...probably slightly worse, but I’m determined to keep going for 10yrs 🤞🏻

so nice to have a forum to share our concerns. It makes you feel more ‘normal’ and aren’t coping alone.

MeganL
Member

Re: tamoxifen and digestive problems

Hi jnzops

Yeah, I too didnt have a problem with digestive before tam. Not sure why the doctors refuse to admit them (but I insist them to address my concerns on managing the side effects and discomfort as much as possible)...I have some shortness of breath after taking tam. Did u experience that? What kind of digestive problems do you face now? 

jnzops
Member

Re: tamoxifen and digestive problems

Hi Megan,

Thanks so much for your story.  I had stage 2 and mastectomy in 2017.  I've been on Tamo for 3 years and my digestive system (which was perfect before) is now a problem.  I too, have been told many times that my issues are not from Tamo, but I don't think it's a coincidence that after having perfect stomach and digestion my whole life, 3 months after starting Tamo I have these issues.  It's such a relief to speak to others who experience the same problems.  You start to feel like either it's in your head or you have another medical issue.  Thanks,  Nic  

MeganL
Member

Re: tamoxifen and digestive problems

Hi Berryq

 

i am 39 diagnosed BC on my 38th birthday (sadly not in time for the yearly mammo chk). I am stage 2, no spread to lymph nodes, oncotype dx score 13. Two cancerous tumours found in 2 diffrent surgeries. My story is kind of ridiculous. Have been taking tam for 12 mths. Got a series of side effects including digestive. Cos my oncologist only acknowledge constipation as side eff of tam the rest of the side eff I got a very hard time figuring, thinking  that they were a result of tram flap surgery. I am very glad I found this forum too and figured they are from tam. And to be even sure cos I stopped tam for 2mths all the problems including bloating constipation indigestion, they were gone. For my case it is quite hard for oncologists to suggest what adjuvant treatment is appropriate for me as my case is a bit not the tradition. What I know is they are thinking to push me 10 yrs tam(Sad) as I rejected ovarian suppression. I still trying some natural ways of dealing with bloating n gas instead of relying on famotidine. I try to walk a lot more and I realize I burped a lot lesser, tummy feels better. I have a step tracker watch and I try to walk as much as possible like 5000  to 7500 steps a day! Haha. I hope my suggestions can help you abit:) 

berryq
Member

Re: tamoxifen and digestive problems

I too have terrible bloating, gas and severe constipation issues since being on Tamoxifen for about 3months. I was diagnosed with BC DCIS non-invasive stage zero and I took 9weeks of radiation.  I'm really thankful that it was caught early during my 2nd mammogram at the age of 41.  My medical onco doesn't associate any of this to the Tamoxifen.  I'm so glad I googled this and stumbled upon this forum to know that I'm not alone.  I'm due to take the Tamoxifen for 5yrs.  I will definitely try some of things that I've read on here but will continue to take the drug.  In my situation the pro's out way the con's for right now. 

Suebrit59
Member

Re: tamoxifen and digestive problems

Hi Megan, let me know when you are officially a member and I will private message you. My oncologist never suggested anything for the reflux. He more or less doesn’t believe it’s the tamoxifen that’s causing it nor the Letrozole prior to that. But whenever I take a break from any of these medications things start to improve within weeks so I know he’s wrong and I’m right! My daughter however, who is a gynecological surgeon, does believe me and prescribed Omaprozole /Prilosec. I’m currently only on 20 mg a day but she says if it doesn’t help I can take up to 40 mg.
My oncologist originally told me that I probably would be on medication for 10 years. But recently he seems to be backing off that decision. My onca dx score was a 7 which means I have a very low chance of reoccurrence. In other words the Metastasis causing hormones of my tumor were low and so I have a very small chance of reoccurrence. With that said he is leaning more towards taking me off the drug in seven months time which I can’t bloody wait for!!

MeganL
Member

Re: tamoxifen and digestive problems

Hi PZKM

 

I have terrible bloating too from Tamoxifen, taking it about 10 months already. Heard your story I guess you have been through a great deal before taking Tamoxifen. I had 1 mastectomy, breast reconstruction, 1 lumpect (nodule discovered 1 month after mastectomy), and then radiation. I thought it was easy with Tamoxifen after the whole long ordeal.. but it is not.

I got shortness of breath everyday and indigestion/ bloating and constipation.... Oncologists and doctors similarly dismissed my complaints said is not Tamoxifen... oh yes it is. The doctor see my stomach ct scan and said my stomach is nothing but all Air (bloating with trapped air). I burped frequently also after taking Tam. The doctor prescribed me Famotidine to remove the trapped air and after taking i burped so badly that i almost vomited all the food and water.I agree the oncologists know little about side effects and not addressing any of our concerns..Frustrating it is!

And understandably depressing i know cos people around us will say you have done all the treatments, what are we still complaining about Tamoxifen...hmm...

I am also very worried tamoxifen cause some problems to my uterus also.. sigh.. hard to be a woman especially a woman with breast cancer, isn't it? 

MeganL
Member

Re: tamoxifen and digestive problems

Hi Suebrit

 

I think the system does not allow me to use private messages yet. I think i need to post many more messages around in this forum so as to have access to private messaging...hahaha...

Did your doctor prescribe you some acidopihilus type of medication to relieve your discomfort like bloating? And also any medication for your acid reflux?

I tried those acidopihilus/ yakult but it does not really work on me. The doctor then prescribed me Famotidine to remove trapped air from my tummy (He still could laugh seeing my ct scan that my stomach is all nothing but Air). 

Btw, did your oncologist suggest you to take tamoxifen for the another 5 more years after completion of 5 years? guess it is like their standard protocol....hmmm... Life with tamoxifen is hard to be honest...

Suebrit59
Member

Re: tamoxifen and digestive problems

Hi Megan, what’s your user ID? I keep trying to send you a private message but the system doesn’t recognize MeganL.

MeganL
Member

Re: tamoxifen and digestive problems

Hi Suebrit

 

Sorry for the late response. How is your reflux and indigestion? I didn''t have reflux but i can understand how annoying the side effects are when they are affecting our quality of life and there are more bad days for me ever since the diagnosis of breast cancer in Oct 2018. My oncologist agrees the constipation is due to tamoxifen but said indigestion is not. But the medicine instruction said that it does cause gastro-intestinal intolerance so there is no doubt to it. I just had constipation having a little more spicy food recently and i guess i need to avoid spicy food for the time being with tamoxifen. 

 

i did not have the luck to meet good doctors along the way (can share the long winding story next time) and i changed to another hospital to seek treatment in November 2019. My hair loss is improving (90 per cent of the hair came back in 3 months, stopped med for 2 mths) after I switched back to the old brand of tamoxifen and apply minoxidil concurrently (Not much information online to say if the hair will grow back after stop the med). Cos hair loss is a known side effect of tamoxifen my current oncologist at the new hospital dared not deny it. But it is not a common side effect here in my country and I always feel why am i the one? The previous hospital i was in the oncologists have never seen such case before and cannot help in any way on hair loss and i was very angry and depressed and tried to deal with it myself with the dermatologist. i feel unsupported in the journey.

 

My experience of shortness of breath is similar to yours but mine can worsen till i need to sit or lie down to rest sometimes. I visited another oncologist, a very experienced one in my country. He said that this is unusual but he did not dismiss my complaints immediately. He did not rule out the possibility it is caused by tamoxifen. He was not sure if it is an allergy/ side eff/possible i tend to have blood clots easier than others (he asked about my family history). He gotten the original form of tamoxifen ready just in case i have problems with the generic kind (can cause problems like shortness of breath) i am taking now. I do feel alot more assured with such doctors!

 

Hang in there u are almost done with tamoxifen!!! My onco suggests i take 10 yrs of tam cos i am super high risk.... hmmm...really jus by thinking of it it makes me feel down! Is there any way in this forum to private msg?

 

Suebrit59
Member

Re: tamoxifen and digestive problems

Megan, I forgot to say that I get shortness of breath too! It’s almost like a mild asthma attack. It’s usually followed by an anxiety attack and most definitely this is caused by the tamoxifen! I have read several studies, one or two pub med studies, which are scientific and they clearly state that tamoxifen causes multiple side effects some of which are anxiety, indigestion, constipation etc. So regardless of what our oncologist say we are the ones experiencing the side effects!.

Suebrit59
Member

Re: tamoxifen and digestive problems

Hi MeganL, I have taken several breaks throughout the four years and 4 months I have been taking hormone medicine for breast cancer. And whenever I do it takes sometimes a couple of weeks but the side effects subside. Then when I start the medicine again within a week they are back! The reflux and the burning mouth, indigestion, is most definitely a side effect from these drugs. My understanding is that the lack of estrogen slows our digestion down in Our intestines. This brings on an IBS effect, or actual IBS, which can manifest into indigestion and for me reflux and burning mouth. I simply don’t understand why my oncologist thinks that he knows more about my body than I do. Anyway I have eight months to go and can’t Flippin wait, message me if you want to chat we can share notes and support each other.

MeganL
Member

Re: tamoxifen and digestive problems

Hi Suebrit

 

I have finally found people who have similar experiences as me. I took Tamoxifen from last yr March and suffered from indigestion with lots of gas and burping and constipation. I tried to get around constipation by drinking more water than usual and take prune juice (i dont want anymore medicine) if it really gets v bad (it works for me). Some days i take vegetarian meals and it helps too. 

I did not know that the indigestion was from Tamoxifen and thought it was from the Tram flap reconstruction breast surgery. I kept asking my plastic surgeon on it for many months. I also asked him about the shortness of breath that i was experiencing. My oncologist said tamoxifen does not cause indigestion or shortness of breath. So frustrating! No one wants to own up. 

I thought it was my plastic surgeon problem until 2 mths ago i stopped taking Tamoxifen cos the hospital prescribed another brand of Tamoxifen and caused hair loss on me. I am only 39 and it is so distressing to a point of depression. I just restarted Tamoxifen again and the shortness of breath and burping and indigestion came back on the 5th day of taking and persisted. For 2 mths without Tamoxifen i have none of shortness of breath or indigestion issues. I dont know what the oncologist going to deny further. And make things worse she said they have never seen a single patient in the established hospital had hair loss from tamoxifen while my dermatologist was totally in disbelief!

 

Anyone has shortness of breath from Tamoxifen? 

Suebrit59
Member

Re: tamoxifen and digestive problems

Hello PZKM,

 Just a friendly acknowledgment of your post. I have nine months to go on adjuvant therapy having been on it four years three months. I have been through arimidex, letrozole and I’m now on tamoxifen for the final push to five years.  The reason I have been on three different types is a futile attempt to relieve my digestive issues.  I have experienced severe reflux from day one, in addition to many other nasty side effects.  I also have constipation and really hard stools that tear me apart if I don’t take magnesium supplements.   This coupled with excessive gas, and I mean excessive, and bloating has made my life absolutely miserable over the last four years! I could cope with the constant muscle ache, arms and lower back, the frequent urination, getting up four times a night to go to the bathroom, the mood swings, frequent sadness and brain fog  but the digestive issues really, really get me down!  Just the thought of a reoccurrence is the only thing that’s kept me compliant! My ONC pretty much refuses to acknowledge the fact that reflux is a side effect of these horrible drugs. I realize they are keeping the cancer at bay but I wish our medical staff would at least be sympathetic to someone who gets up every day dreading the next 10 hours! I take Prilosec, omeprazole, every day and it does help some but doesn’t negate the constant sore throat, burning mouth and feeling of despair every time I eat something. It happens to me despite what I eat but some foods I found do make it worse such as dairy products, wheat products, nuts and spicy foods. Sorry if I sound like I’m complaining I’m just trying to sympathize with you I understand what you’re going through! Reach out if you need to chat.

PZKM
Member

Re: tamoxifen and digestive problems

Hi all. I’m new to the forum. I was diagnosed with stage 3 invasive BC in May 2016. I had 2 lumpectomies, sentinel node removal, chemo, radiotherapy, herceptin & now on Tamixofen.

2018 Doctor thought I had ovarian cancer due to the symptoms most of you are describing. It turns out I had a large ovarian cyst but alongside that thickening of the lining of the uterus, as we all know is a side effect of Tamixofen. Due to heavy heavy bleeding I was advised to have a full hysterectomy which I did, but 1 ovary & tube was left due to endometriosis which I didn’t know I had. Just thought I had painful periods.

Now 2019. I’ve been suffering with bad chest pains, bloating, nausea, unable to sleep lying down sometimes. Doctors fobbed me off with indigestion but I knew it couldn’t be that. I buried myself again as I was convinced it had come back elsewhere!

Saw a Doctor this week who thinks it is gastroesophageal acid reflux & prescribed Omeprazole. Also to have a scan in 2 weeks time. 
I’m praying these tablets work as everyday is getting harder & harder to get through. I’m so grateful to still be here but bloody hell its hard everyday feeling like s@@t! Having to hide it as I know people think your ok as you’ve had & survived the treatment. Little do they know about the worst after affects. 😢


@francescat wrote:

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?

 

Frances 


 

meliaj
Member

Re: tamoxifen and digestive problems

Hi Princess Warrior,

I've been on tamoxifen for one year and I'm experiencing horrible bloating. I tried to find research on the effect of tamoxifen on gut flora and couldn't find anything. Can you point me to where you found this study on yeast imbalance and tamoxifen please? My doctors won't listen to me when I say it's the tamoxifen causing the bloating.

Thank you so much!

cyndeehere
Member

Re: tamoxifen and digestive problems

I was so relieved to read this thread because I thought”oh no, I have bladder or pelvic cancer!  I was diagnosed early stage 1 breast cancer not in nodes.  Had a partial mastectomy with radiation. I’ve been taking Tamoxifen for 4 weeks now and my stomach is bloated like a tick!  The pain in my lower pelvis area is unbearable at times.  I went to urgent care and urine culture was negative. I thought I may have had a UTI. Also had a pelvic and internal

sono, all is negative (thank god)!  Reading these posts has settled my mind, but not my stomach.  I feel like I want to just stop taking this poison but I don’t want to do the wrong thing!  I don’t think I will be able to do this long term! 

 

Cindy💕

Ellygale
Member

Re: tamoxifen and digestive problems

I just quit tamoxifen last week at 5.5 years. Dr wanted me to stay on for 10 years.  Sometimes I think we are guinea pigs.  I just read these posts and have now realized that tamoxifen is all my problems. Pain in guts, back. Tired all the time.  They say exercise. Who can exercise when they can barely function.  I quit just to see how I would feel. I will retire in 3 years and I felt like I am never going to make it. It was so hard going to work.  Now I feel like I have 500 times more energy.  Yay. I will make it to retirement.  No doctors ever linked tamox to any of my symptoms.  Had ultrasounds and colonopsy and nothin.  I was like what the heck.  What is wrong.  I went straight from chemo onto tamoxifen.  So I never knew if the side effects were from chemo or tamox.  Now I know.    I was just existing..... now that I quit I am actually going to live life like it’s supposed to be. 

Cindy A
Member

Re: tamoxifen and digestive problems

Thank you all who have posted on this forum. It has helped me understand what may be going on with my stomach. I have been on Tamoxifen for over 5 years after having Stage 3 B.C. and just recently quit when I started experiencing bloating and gas thinking it may be a sign of Uterine cancer which runs in my family and is a risk of Tamoxifen. I have had an ultrasound and nothing is showing up but that did not ease my worry. And my symptoms seem to have gotten worse since going off Tamoxifen so now I wonder if I should try going back on because they suggested I stay on it for 10 years. I have no answers yet but thought I needed to post and add to the growing list of people who have this same complaint in hopes of educating the medical community and of course others who suffer. I’m definitely going to start with trying to get my gut healthy again using strong probiotics. Thank you again everyone!
JackieJan
Member

Re: tamoxifen and digestive problems

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

dkkschnidt
Member

Re: tamoxifen and digestive problems

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.

Mookie
Member

Re: tamoxifen and digestive problems

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:

 

http://blog.katescarlata.com/2018/01/04/mast-cell-activation-syndrome-part-1/

 

Hope others find this helpful 🙂

 

JoanneNJ
Member

Re: tamoxifen and digestive problems

I have your symptoms entirely. Enormous bloated belly attacks me every day. On a good day, I look 5 mos pregnant, on a bad day, I look like I am about to give birth. I am 56 years old and people ask me " When are you due"?. I gave away all my beautiful size 8 clothes and am a 14/16 now. I am on tamoxifen for 9 yrs. 1 more to go. I am BRCA 2 so, it was important to stick with.

I reach so badly t9 food. I had the tests and am healthy. It's this trapped gfas and wind that hits me. It's now chronic. I no longer have good days w a flat belly.

After my oopherectomy I was put on anastrazole. It nearly debilitated me with stiffness. I handle the tamoxifen ok and the protection provides peace of mind. Definitely stiff but, perhaps age related to some degree.
rachaelb
Member

Re: tamoxifen and digestive problems

I stopped taking tamoxifen after 6 years, 6 weeks ago. I had, had constipation for about 9 months. Really painful. Almost as soon as I stopped the drug it improved.
Princess Warrior
Member

Re: tamoxifen and digestive problems

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!

ann-m
Community Champion

Re: tamoxifen and digestive problems

Hi Pink,

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. 

ann x

Pink
Member

Re: tamoxifen and digestive problems

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.

Beth123
Member

Re: tamoxifen and digestive problems

Hi

 

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!! 

X

Mookie
Member

Re: tamoxifen and digestive problems

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!  

 

Meri
Member

Re: tamoxifen and digestive problems

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

 

🙂

 

studiostudio
Member

Re: tamoxifen and digestive problems

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!

Charys
Community Champion

Re: tamoxifen and digestive problems

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. 

Bondgirl
Member

Re: tamoxifen and digestive problems

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

Charys
Community Champion

Re: tamoxifen and digestive problems

Hi Carley,

 

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.

 

william101
Member

Re: tamoxifen and digestive problems

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.

william101
Member

Re: tamoxifen and digestive problems

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

william101
Member

Re: tamoxifen and digestive problems

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

 

 

 

 

 

 

 

 

Carley Henderson
Member

Re: tamoxifen and digestive problems

I am getting probiotics today. I will let you know if it seems to help 

Carley Henderson
Member

Re: tamoxifen and digestive problems

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. 

Charys
Community Champion

Re: tamoxifen and digestive problems

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.