Tamoxifen and Stomach Irritation

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Veeder14
Veeder14 Member Posts: 880

I started taking Tamoxifen on July 1st and in addition to growing my lining 17 mm in 4 months, it caused my stomach/throat problem to get worse. I was having symptoms (burning stomach, mouth, burping, etc) after taking it one week but continued taking it anyways. I was taken off it in November prior to the hysterectomy surgery, and haven't restarted yet. I was already taking PPI medication and have a long standing problem with stomach/throat irritation however I could manage it pretty well in the last 13 years with modifying my diet and taking PPI medication as long as I didn't swallow any pills that irritated my throat and stomach daily.

For the past two years I've had melanoma surgery, then a lumpectomy, and most recently in December, a hysterectomy plus tons of Pet/CT scans, MRI's, etc., with contrast dye, tracers, some pain medications, anesthesia, etc, so my stomach/throat have really not had a break. I had an endoscopy in Dec 2017, and my 2016 flare up had healed. I continued to take stomach medication though but it doesn't seem to be enough to combat the irritation of the Tamoxifen. Even when I'm in pain I try not to take any pills even Tylenol because my stomach is so sensitive. I'm not sure what to do and the MO really doesn't have any solutions for me.

I've looked into alternative methods to taking anti hormonals such as a patch or IV or injection but there aren't any I'm aware of. Has anyone else had this problem and how did you address it?


Comments

  • Salamandra
    Salamandra Member Posts: 1,444
    edited January 2019

    I've had terrible heartburn and acid bit my doctor's are going back and forth on whether it's the radiation or tamoxifen. My MO scheduled me for a gastro follow up bit it's not until the end of January.

  • Veeder14
    Veeder14 Member Posts: 880
    edited January 2019

    Hi Salamandra,

    I'm sorry to hear your having heartburn. I know from experience it can be miserable. Do you have medications to take already? The main thing for me is to avoid permanent damage to the throat/stomach and decrease the symptoms, and still be able to tolerate anti hormonal treatment.

    I hope your doctor figures this out for you. If it's from radiation, at least it's time limited.

    The Tamoxifen is what set of my latest flair up. I wish there were some alternative ways to get anti hormonal treatment.


  • Salamandra
    Salamandra Member Posts: 1,444
    edited January 2019

    Thanks Veeder14. Yep, I've been on 40mg Omeprazole for a month now. It helped a lot, but even with it, it has been worse than I've ever had before.

    I'm really hoping it's the radiation and it will settle back down now that it's over.

    What did you find that helped you?

  • JosieO
    JosieO Member Posts: 314
    edited January 2019

    Hi Veeder,

    Forgive me for this stupid question, but given your hysterectomy, are you now essentially in menopause or not? I think the determining factor is whether you still have ovaries (which would still produce estrogen). I know you can have a hysterectomy and still have ovaries. So it comes down to the menopause status

    If you are in menopause, then you should be able to take one of the three aromatase inhibitors (Arimidex, Femara, Aromasin) with minimal side effects.

    The only other products I’ve read about for pre-menopausal women are:

    SERMs (selective estrogen receptor modulators) - tamoxifen is a SERM. The others are evista/raloxifine and fareston/toremifene

    ERD (estrogen receptor downregulator) - the product in this group is Faslodex/fulvestrant

    Sorry if this is info you already know. Just trying to understand what options you have besides tamoxifen.

    Prayers for your good health.

  • Veeder14
    Veeder14 Member Posts: 880
    edited January 2019

    Hi Salamandra,

    When I had my last flair up in 2017, this is what helped me. I took 80 mgs (40 mgs 2x/day) of Protonix (prescription strength, not over the counter), plus Sucralfate 3x/day, before meals, it coats your throat/stomach and is a pill luckily didn't bother my stomach. Plus I didn't swallow any other pills that could irritate my stomach like antibiotics. Sometimes not even Tylenol. I went on a strict low acid/bland diet, no citrus, spices, sauces, etc., very boring to eat. Also, small meals several times per day. It took 8 months to heal but finally did as checked by endoscopy.

    After being healed then I had the lumpectomy and more pain medication, anesthesia, etc., that kept me on the above until after radiation. Then I began reducing the medications as recommended by my doctor and felt fine. Then the next month I started Tamoxifen and it started irritating my stomach. So now I'm back to the 80 mgs and some Sucralfate and hoping it heals so I can start the Tamoxifen again but stay on the meds.

    Are you having radiation near your throat or stomach? I was just wondering why your doctor thinks the radiation could be causing stomach issues.

  • Veeder14
    Veeder14 Member Posts: 880
    edited January 2019

    Hi Josie O,

    There are no stupid questions~thank you for the information.

    I am in menopause and have been for 11 years prior to the hysterectomy surgery, and I did have my ovaries removed also. Even though it's been suggested I be treated with the Als medications, I do have severe osteoporosis so not wanting to because it causes so much bone loss, I can't afford to loose anymore. I would need to take medication to treat the osteoporosis also and I know I can't take 2 pills per day that irritate my stomach. It's a good thing I don't have any other medical issues that require medication because any pills that cause stomach irritation I can't take on a regular basis. As it is, I use topical pain medication because I can't take the pills. It's not super effective but saves my stomach.

    I have a referral to GI Clinic and will see if there is another PPI medication that is more powerful than Protonix.

  • JosieO
    JosieO Member Posts: 314
    edited January 2019

    Veeder,

    Just a quick bit of info to share:

    I had a bone scan when I started on Arimidex. I had not, nor currently experience any type of bone pain, nor had anything been noticed with my two fractures a few years back.

    So I was a little surprised when my oncologist told me my scan showed some “mild” (his words) osteopenia in my hip. His follow up comment was that he thought I could benefit from a product called Reclast as a type of bone builder. He said it is given once yearly as an infusion. Told him it sounded logical and that i’d consider it in 2019. (Not due to see him for a few more months, so expect some more info/discussion before I would get a scrip for it)

    Might this be something of benefit to you? I forget exactly what I read about this product, but I recall it didn’t seem as “scary” as some other bone building treatments

    But I do think that a good GI consult is appropriate. Even with no cancer therapy, you need to be able to take medications with as little issues as possible.

    Continued wishes for success.

  • Veeder14
    Veeder14 Member Posts: 880
    edited January 2019

    Hi Josie O,

    Thanks for the information and wishes for success. Why was a bone scan ordered? Was it to look for fractures? I've had the DEXA scan but never a bone scan. I wonder if I should ask for one.

    In the past I've been to a Rheumatologist when I was treated for osteoporosis with Forteo. Then the doctor wanted me to follow up with a yearly infusion and I choose to use Prolia monthly so if there were side effects it would only last the month.After having teeth complications I quit.

    If you get a year's worth of medication infused into your system and you have side effects then your stuck with it for a long time. But if the medication doesn't bother you then you don't have to hassle with taking pills or other injections of bone medication.

    I'll follow up on the GI consult. The hospital is so busy that I haven't been able to get in for 6 months but I have a wonderful primary care that's really helpful with ordering medications.

  • Salamandra
    Salamandra Member Posts: 1,444
    edited January 2019

    Thank you Veeder!

    My radiation was right breast... I'm not sure how near the stomach it go. But the nurse I asked about it said that she hears from a lot of women getting radiation on their breast that they're getting heartburn. I don't know. Now basically just waiting until Jan 31, I'll update if I learn anything helpful!

  • JosieO
    JosieO Member Posts: 314
    edited January 2019

    Veeder,

    Forgive my sloppy use of terms. I did have a Dexa scan as well, but everyone called it a bone scan, so I do out of bad habit.

    Agree fully with your monthly vs annual approach to bone building drugs. I continue to research around all of those products, figuring i’ll hope to get a treatment that helps with minimal side effects. The fact that ReClast is an infusion struck me as maybe less damaging to your stomach.

    I’ve had a ton of dental work done, and am sensitive to the thought of messing up my teeth, so I agree with you on the monthly Prolia. I have a few months to consult with my dentist, get his input

    Sheesh-it’s a constant options juggle, isn’t it? Only good thing is that there are now so many breast cancer survivors that more attention is given to these side effects and treatments.

    Glad you have a great primary care-this GI consult is the type of need where a good primary care helps a lot.

    (I thought I had a good primary care, but when breast cancer made its appearance I found that my primary care let me down big time😩. So after my cancer treatments (with my outstanding team) ended, I set out to find a new, supportive primary care who would work with me. Took several months, but now I think I have a good one. Fingers crossed🤞)

    Continued thoughts and prayers for you.

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