Anyone having nausea/vomiting with Tamoxifen?

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Joviangeldeb
Joviangeldeb Member Posts: 213
edited February 2015 in Hormonal Therapy - Before, During, and After

I've been on Tamoxifen for about a year now, after 1 year on arimidex.  I switched to Tamoxifen due to lower extremity pain and  not being able to afford arimidex. 

I battled nausea and vomiting really bad during chemo even with all the meds to combat it.  At one point, I was dehydrated and had to be given iv fluids at my oncologist office.  Then since ending chemo 21 months ago, I've suffered with nausea and vomiting on and off.  It started well over a year ago, so my doctor sent me to a surgeon, thinking I had diverticulitis. (I have a history of diverticulosis).  After the surgeon did ct scans of abdomen and ultrasound, they determined I had a non-functioning gall bladder, so I had it laparoscopically removed.  For a little while, the nausea went away, but came back.  For several months I suffered with nausea/vomiting, diarrhea, lower abdominal discomfort and fever.  It took 2 hospital stays and many emergency room visits for the doctors to determine I had C Diff, which is a bacteria that slowly destroys the gi tract.  I fired my gi doc and got another one, who has helped me alot. After tests proved the C diff was killed, I still was sick with nausea/vomiting, so the new doc suspected the C diff had destroyed the cells that break down lactose. Hence, I'm now lactose intolerant.  I've been off lactose completely and was doing much better but still got queezy alot in the morning and after lunch time.  It progressively got worse to where I couldn't work  full time because I'd throw up, my boss would make me go home until I got a dr's excuse that I was ok to come back.  They are afraid the cdiff might return because it can be contagious and we do surgeries on patients in the office. Anyways, so this last time, its been so bad,  the doc thought I had diverticulitis, but I had no diarrhea. I was off work again for over a week while testing results came back.  It turned out I didn't have any active infection,

Through all this, I'd mentioned a couple of times to all my doctors, (gi, internal med) if it could be tamoxifen or any of the other meds I am on.  I was told not likely.  But the more I thought about it, the more I started to suspect that it was the tamoxifen.  I take my pill first thing every morning.  After discussing this with my mom, she suggested I try taking it at bedtime, and see what happens.  

So today, for the first time, I did not take my tamox and I feel wonderful.  No nausea whatsover, no body aches, fatigue.  i have been unable to sit on the floor, difficulty climbing stairs, walking with slight limp, etc.  Today I had NONE of that.  I sat down cross legged on the floor with my coworkers today and we all cried tears of joy.  I couldn't believe it.  I didn't really realize how bad I'd been feeling until today. 

I'm going to take my pill at bedtime and hope for the best over the weekend.  If my symptoms return, I'm going to call my Oncologist's office on monday.  I'm scheduled for a scope down the throat on 2/12/10 but if it's proven it is the tamoxifen, I'll call my gi doc to cancell the procedure.

I guess I want to know if anyone else has had this problem and what the solution was?  Has anyone else taken tamoxifen at night, instead of the am, and has it worked to lessen the side affects?

I'm worried about not being able to continue if this time switch doesn't work.  The side affects were getting so bad it is interfering with my life, work, finances, mind, etc.

Sorry this is so long, but I've been through the ringer with this and get frustrated that it's taken this long to come to this conclusion with none of my doctors being able to properly diagnose me.

thank you,

Deb

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  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited January 2010

    Have you been tested for gastroparesis?  I ask because I have it and can have bouts of nausea and vomiting that last for months.  And its worse in the mornings.  Gastroparesis is sometimes known as slow stomach emptying.  The stomach takes too long to digest, particularly difficult to digest foods (my triggers seem to be standing oil, nuts and sometimes raw fruits and vegetables).  it can be controlled by a restricted diet until the symptoms go away.  Maybe you should google it and see if you think this might be it.  The test for it is a stomach emptying test where you eat some scrambled eggs with a trace amount of radioactive material and they track your digestion.  I called it Breakfast in Radiology.

     Gastroparesis is a form of neuropathy and i believe I got it from taxol, but my cancer doctors don't support the conenction.  Certainly no study has found a connection.  While I am on tamoxifen, I don't believe there is a connection.  I had two symptom-free years while on tamoxifen before the gastroparesis returned this past fall.

     Keep me posted.  I'm interested in what you learn. 

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  • Joviangeldeb
    Joviangeldeb Member Posts: 213
    edited January 2010

    Thanks for the information.  I'm going to ask my doctor about that.  I have been having trouble with diarrhea after eating fresh veggies and fruit, so I eat it cooked.  I also have gotten violently ill(vomiting) after eating tuna and mayo.  I think its the tuna cuz, I've eaten mayo on other sandwiches without getting so sick.

    I took the tamoxifen last night about 9pm and got so nauseated that I had to lie down.  It lasted for about 1/2 hour and then went away and I was able to fall asleep.

    Again, thanks for the info and I'll keep you posted. 

    take care,

    Deb

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited January 2010
    After being  nauseated from pain meds, my anethesiologist recomment Bonnine.  I was able to buy a big bottle of about 100 (chewable too!) from behind the pharmacy counter for very inexpensively.  I use it when taking my pain meds but also Tamoxifen and have had no problems.  You might want to ask your doctor or pharmacist about it to make sure it wouldn't interfere with anything else you take.  It seems to work for me just fine. Wink
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  • Abbey11
    Abbey11 Member Posts: 335
    edited January 2010

    Deb,

    Have you had a CYP2D6 test to see how your liver metabolizes tamoxifen?  The test results will classify you as an extensive metabolizer, intermediate metabolizer, poor metabolizer, or ultra-rapid metabolizer.  I believe that those who are poor metabolizers often have severe side effects to medications that are metabolized by the CYP2D6 pathway (like tamoxifen.) The meds are not metabolized effectively and overdoses can occur.  You might want to ask your doc about this test.  Best of luck to you!

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  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited February 2010

    I think its the opposite, that poor metabolizers have no side effects.  but recent studies have all of that, and the CYP2D6 into question.

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  • Abbey11
    Abbey11 Member Posts: 335
    edited February 2010

    Here's the description of the different types of metabolizers from the Mayo Clinic web site (below.)  Poor, or slow, metabolizers can have serious side effects.


    By Mayo Clinic staff

    The CYP450 test divides people into four main types:

    • Normal metabolizers. If the test shows that you process certain antidepressants normally, you're more likely to benefit from treatment and to have fewer side effects than are people who don't metabolize medications as well.
    • Intermediate metabolizers. Because you have at least one gene involved in drug metabolism that doesn't function normally, you may not process some medications as well as normal metabolizers do.
    • Slow metabolizers. If you metabolize certain drugs more slowly than normal, medications can build up in your system, with the potential for serious side effects.
    • Ultrarapid metabolizers. In this case, medications leave your body too quickly — often before they have a chance to work properly.
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  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited February 2010

    Thats info for CYP450, a different pathway.  

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  • Abbey11
    Abbey11 Member Posts: 335
    edited February 2010

    It's the same pathway.  CYP2D6 is a gene in the Cytochrome P-450 system.  So the test on Mayo's web site is testing three genes which can include varients that influence drug metabolism: 2D6, 2C9, and 2C19.  Tamoxifen is metabolized through the 2D6 pathway, so patients on tamoxifen can be tested for varients of only 2D6.  The web site healthanddna.com has a good explanation of the tests and when they can be useful. 

    Anyway, I don't want to get in a disagreement about test labeling; that's not going to be helpful to joviangeldeb.  But, I do think that there's significant evidence that those who do not metabolize a drug correctly become ill.  It's just something to ask your onc.

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  • daffodil45
    daffodil45 Member Posts: 76
    edited February 2010

    I had terrible nausea while on Tamox... and it got progressively worse. Disappeared when I stopped. It was like morning sickness, all the time. I could not function. I am now off of all hormone therapy. I take bi-annual infusions of Zometa, and get checked a lot. Quality of life is very important to me. Good luck!

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  • Beq1967
    Beq1967 Member Posts: 1
    edited February 2010

    I have been having nausea and vomitting as well and have not been on the Tamoxifen that long.  My oncologist acted like it was not a normal symtom and stopped it for a few days.  It started again when I went back on it even after trying it at bedtime and splitting the dosage.  I also have been getting severe headaches during the day???  Tired and feel extreme anxiety- I also have a loss of appetite and weight and my hair is breaking...

     Does anyone have those symtoms as well?  The only one that I have seemed to have is the hot flashes and that is what I was told I would have! 

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  • Joviangeldeb
    Joviangeldeb Member Posts: 213
    edited May 2010

    I found that If I take the Tamoxifen at bedtime, instead of the morning, I fair much better.  I have very little nausea anymore.  thanks to all that responded.

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  • linn56
    linn56 Member Posts: 210
    edited May 2010

    I have been on Tamoxifen 3 months now. I am a normal metabolizer. At first I split the tablet in 2 because I read on here that that made the side effects less. But it kept me awake at night. I have sleeping problems anyway, so couldn't afford to lose any more. Then I started taking the whole tablet in the morning. It does make me a bit nauseated. If I took it with coffee (normally I drink a cup right away, and eat after I have that), it's much worse. Now I take it after breakfast...and make sure it's pretty substantial, like a big bowl of oatmeal.

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  • sherridl
    sherridl Member Posts: 42
    edited May 2010

    I had severe side effects w/Tamoxifen, including nausea.  I had to take Reglan, which worked very well. I also had migraines, severe cramping, severe hair loss, blood pressure problems and lots of others.  I was just reading about people getting tested for metabolism - I was never given that choice - but it makes sense.  (I also had higher than normal liver readings at times, although I was on a lot of other medicine to counter-act the side effects).

    I switched oncologists when my original refused to admit that any of the side effects were from Tamo.  I found a wonderful one who took me off Tamo, then had me go back on it in slow increments. Even after the first year, I was never able to tolerate 20 mg. - I took from 10-15, depending on how I was feeling. She did reassure me that even though the recommended dosage was 20 - that was the dosage the drug company always used in testing, and that she felt that even just 10-15 mg could have the same effect.

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  • SandyAust
    SandyAust Member Posts: 393
    edited May 2010

    I have only just seen this post.  I thought I would add my experience for those who are interested.  I had nausea when I first started taking tamoxifen. It only lasted a few weeks for me thankfully. 

    I have done my five years and I have been off it for six months. I know find I am less fatigued. 

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  • Joviangeldeb
    Joviangeldeb Member Posts: 213
    edited September 2010

    Am so sorry its been so long since I last posted on this thread. I forgot all about it.  Just wanted to update has been going on.  The nausea and vomiting kept getting worse, so my oncologist took me off Tamoxifen for a trial run.  Was off for 1 week and it didn't help, so she put me back on it.  After another Ct scan, and and EGD wich was normal, my Gi doc sent me for a gastric emptying test.  I failed big time and they diagnosed me with Gastroparesis.  They put me on Reglan, but I couldn't stay on it because it made my blood pressure sky high and made my heart beat too fast, even though it helped the nausea somewhat.  My Gi doc referred me to a surgeon, and 3 weeks ago, I had a gastric electrical stimulator inserted. (Gastric pacemaker). Only had to spend one night in the hospital, and am back to work full-time for the first time since June.  I'd gotten too sick to work but a few am hours while fasting since the night before. I wasn't supposed to be working, but my boss thankfully, allowed me to go in a few hours every morning. I would fast from the night before, go home about 10:30am, take a phenergan, eat and than go to bed for hours, trying to keep my food down.

    Now, after the surgery, I'm able to hold down food in small amounts. I'm off the phenergan. Yeah. so it turned out not to be the Tamoxifen at all.  They don't know exactly what has caused the Gastroparesis, but I suspect it was the chemo because I never had any problem with nausea and vomiting until I went through it. 

    Take care everyone,

    Deb

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  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited September 2010

    I have gastroparesis.  I suggested you get tested for this earlier in the thread.  Mine is not as bad as yours -- mine is episodic and i control it through diet.  I will tell you that I have always believed chemo triggered mine as well, I didn't have it before either and gastroparesis is a form of neuropathy.  I am glad the surgery has helped and that you are feeling better.

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  • Joviangeldeb
    Joviangeldeb Member Posts: 213
    edited September 2010

    Thanks, Member.  I recall you telling me about it and I discussed it with my Gi Doc.  It's funny how they follow a protocal and what tests to perform in a specific order. I googled it and the protocal lists the gastric emptying test as after a ct scan, xrays, egd. etc. etc.  I just wish the gastro emptying test had been done sooner then it was. 

    Good to hear your able to control yours with diet. The best to you.

    Deb

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  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited September 2010

    Hm . . . they never gave me a CT scan.  They scoped me and then it was on to the stomach emptying.

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  • ims75
    ims75 Member Posts: 1
    edited February 2015

    Hello, I have been on Tamoxifen for 2 years now and am experiencing bouts of nausea again. This is reminding me of how I was when I first started the medication. Has anyone experienced nausea after a few years on it?

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  • Bcky
    Bcky Member Posts: 167
    edited February 2015

    I started Tamoxifen last month. The first few weeks I could barely eat. It was not nausea but more zero appetite and if I did eat I felt sickened by the food. I made a pot of soup and just ate of it during the day when I could. Bitefuls here and there out of the soup pot. I have found Gelato; yogurt; low fat cheese; fresh sourdough bread etc helpful. Real bland foods. Breakfast is cereal. It has eased up some. I also just nibble all day. I have not eaten a full meal since being on Tamoxifen. Small meals. Bland foods.

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