This Tamoxifen sucks!

Options
tacichon
tacichon Member Posts: 93
edited January 2015 in Hormonal Therapy - Before, During, and After

I have never been so miserable..red eyelids, watery eyes, bloating and constipation. I have been using  systane balance for the eyes, vanicream for the eyelids, and taking metamucil 6 pills a day for the constipation and eating huge salads. Do these symptons subside at anytime?? I have taken up step aerobics and work out  at least 5 tiimes a week.. I have been on TMX since 11/3.  I ready to quit it.

Any other stories out there?? I am so miserable

Terri

· Share on FacebookShare on Twitter
«1345

Comments

  • sweetbean
    sweetbean Member Posts: 1,931
    edited December 2011

    Hey there, I had SE's for a few months, but now they are mostly gone.  Still a little constipated, so I eat a ton of fiber.  Do your best to stay on the Tamox for as long as you can - it really does cut your risk of recurrence.   So sorry to hear that you are suffering this much - that really sucks!

    · Share on FacebookShare on Twitter
  • jancie
    jancie Member Posts: 2,631
    edited December 2011

    Terri - I also had bad SE's with tamoxifen so I switched over to Arimidex however, I am going back on Tamoxifen in 2 weeks.  I so don't want to do this!! 

    I take stool softeners every night.  Without those I would get so constipated.  Being on pain meds doesn't help with the constipation either.

    I just keep thinking just 3 more years of this crap hopefully. 

    · Share on FacebookShare on Twitter
  • tacichon
    tacichon Member Posts: 93
    edited December 2011

    Oh Sweetbean, Thank you what kind of stool softeners do you take to help with the constipation?

    Thank you and hugs,

    Terri 

    · Share on FacebookShare on Twitter
  • tacichon
    tacichon Member Posts: 93
    edited December 2011

    Janice, thank you what stool softeners do you reccomend.. The aerobics really help with the sore joints and night sweats..

    Hugs,

    Terri

    · Share on FacebookShare on Twitter
  • sweetbean
    sweetbean Member Posts: 1,931
    edited December 2011

    I don't actually take stool softeners, but I might start.  It only occurred to me recently that the constipation was caused by the Tamox.  I just eat TONS of fiber - broccoli, beans, etc.  To help with joint aches, I took Glucosamine/Chondroitin with MSM.  You can buy it at the Vitamin Shoppe.  It definitely helped.  I still take it, even though I don't have any more pain.  (I got my period back in November.)

    · Share on FacebookShare on Twitter
  • tacichon
    tacichon Member Posts: 93
    edited December 2011

     I heard miralox was supposed to be good to regulate you.. Mayo Clinic actually says TMX dehidrates you and that why the constipation..  I am definitely getting something. This is crazy..

    Wahoo, to getting your period back!!!

     Hugs,

    Terri

    · Share on FacebookShare on Twitter
  • tgisiner
    tgisiner Member Posts: 69
    edited December 2011

    Terri,

     I've been on Tamox for about 4 months now. I had severe abdominal bloating, stomach pains and watery eys when I first started, but now most symptoms have subsided. Do still have watery eyes but the bloating was the worst and its gone now. Hang in there. Hopefully it'll get better soon.

    Tammy :)

    · Share on FacebookShare on Twitter
  • cycle-path
    cycle-path Member Posts: 1,502
    edited December 2011

    Terri, have you tried getting Tamox from a different manufacturer? Some of the women here on BCO had side effects with the Tamox they got from one manufacturer but not from the drug they got from a different company.

    · Share on FacebookShare on Twitter
  • tacichon
    tacichon Member Posts: 93
    edited December 2011

    Tammy, Thank you so much!! I am using Systane Ultra for the eyes, and your right the bloating is the worst.. I received a few suggestions about the bloating and constipation which I am going to try. When did your side effects subside?  The best thing I did was get back into step aerobics, that has really helped the night  sweats and body aches.

    Thank you again!! I will keep you posted.

    Terri 

    · Share on FacebookShare on Twitter
  • jancie
    jancie Member Posts: 2,631
    edited December 2011

    Terri - just got back in.  I use the Target brand stool softener/laxative combination.  They work for me - I don't get diarherea  (heck can anyone spell that word right?)  with them but allows me to have good bowel movements.  I take them nightly.

    · Share on FacebookShare on Twitter
  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited December 2011

    Terri .. Tamoxifen caused me to have severe nausea and vertigo.  Sadly, I only lasted on it six weeks.  I had a small Stage I tumor.  I didn't make the decision to quit lightly ... I did a lot of research into my statistics for recurrence and survival and then opted for quality of life over the severe side effects.

    Wishing you the best,

    Bren

    · Share on FacebookShare on Twitter
  • eulabt
    eulabt Member Posts: 194
    edited December 2011

    For the first 7 months I had all the usual side effects. I was able to control most of them with diet and excercise. The hardest part for me was the bloating and weight gain. I am an exercise queen, so this really bothered me. At the 7 month point I got vertigo like symptoms so bad that I went off. I have been off for 6 weeks and it has helped, but not completely back to normal. Good luck.

    · Share on FacebookShare on Twitter
  • machfowler
    machfowler Member Posts: 33
    edited December 2011

    Tacichon, Sorry to hear about your troubles with Tamoxifen. When I started (in september) I had a terrible headache, dry eyes and insomnia. I was so miserable that by the third day i was barely functioning. I spent one work day with my head on my desk most of the day.

     I called the Onc and told him how bad the headaches were and he said to stop taking the pills. He wrote a new perscription for a 10 mg dose. I started those and didn't have any issues at all. (Minor hot flashes) I took that dose for 6 or 8 weeks and when I went back to see the dr. he said to just try out the 20 mg again. He didn't think I would have any trouble the second time and he was right. Now I am doing fine with it. In all my reading on this blog I never have seen anyone say that they tried taking a lower dose to get started. I don't know if that would help others but it sure helped me. Good luck, I hope the SE's go away for you soon.

    · Share on FacebookShare on Twitter
  • tacichon
    tacichon Member Posts: 93
    edited December 2011

    Machfowler, Thank you so much. I might try that I will call my Onc tomorrow. What bothers me the most is the bloating and being irregular I am trying miralax to get regular.

    I was told TMX is poison we take and it is.. that or a strong witches brew..

    Hugs,

    Terri 

    · Share on FacebookShare on Twitter
  • tacichon
    tacichon Member Posts: 93
    edited December 2011

    Eulabt, that is what is bothering me the most weight gain and bloating. I do step aerobics at least 5 times a week, that has helped allot. I  am going to give this TMX 4 months, my Onc said the SE's should stop by then.. We shall see.

    I am so thankful for this sight and everyone's input.. it is helping me!

    Hugs and Blessings

    Terri

    · Share on FacebookShare on Twitter
  • peggy_j
    peggy_j Member Posts: 1,700
    edited December 2011

    eulabt and BinVA, I'm curious to know more about your symptoms of vertigo. I recent had an episode that I thought was vertigo but the doctor Dx'd it as disequilibrium caused by a virus or something in the inner ear. Seems weird. Anyway, I don't want to hijack this thread so I started a separate thread on the topic. If you have any advice or experience you'd like to share, I'd love to hear it. thanks!

    Link to the new thread on vertigo/disequlibrium issues:

    http://community.breastcancer.org/forum/78/topic/780092?page=1#idx_1 

    · Share on FacebookShare on Twitter
  • B123
    B123 Member Posts: 730
    edited December 2011

    I was on Tamox for one month with a mid break and I couldnt handle it anymore, I tried it as 20mg and then reduced to 10mg, it did the same thing to me.  joint pain, heavy pelvic pressure, headaches and most of all severe severe stomach pains with diarrhea! WORST pain ever! Never never again! I am now going in for a lupron shot to stop the estrogen and will go on another med, hope and pray it works better for me, I dont think I stand for that again... worst pain in my life.  Good luck to you!!!

    · Share on FacebookShare on Twitter
  • Smithy
    Smithy Member Posts: 51
    edited December 2011

    Kefir is my #1 aid ...takes care of boating....you name it. This helps irregularity. My sister's boyfriend survived stage 4 bladder cancer - his bowels and digestion were absolutely destroyed. He swears by Kefir. That is how I learned about it. Kefir also helps with weight and energy...you can buy it at the grocery store - next to the yogurt. Kefir is 99% lactose free. Tastes good. A bit expensive but so worth it.:) it's an old world drink. It's been around for hundreds of years. It is a probiotic.



    My sister went to all my appointments with me. She had told my breast surgeon about her boyfriend and using Kefir...when we saw her for my second appointment she told us that she was hooked on the Kefir.

    · Share on FacebookShare on Twitter
  • SheChirple
    SheChirple Member Posts: 954
    edited December 2011

    Aw, jees, I am so scared of Tomax.

    · Share on FacebookShare on Twitter
  • Mandalala
    Mandalala Member Posts: 162
    edited December 2011

    I was miserable on Tamoxifen, too. I was on it for a week, and during that week I lost 3 kilograms because of nausea and diarrhea. The first days I had some joint pain which disappeared rather quickly, and I think I had some hot flashes too, but it was the nausea/diarrhea/dehydration/weight loss that made my doctor tell me to make a break in late October. I will start again January 10 to see if it goes better, but I am not very keen on it. OK, it reduces the risk, but it adds other risks (cervix and uterine cancer run in the family), and having to medicate against side effects seems to be a way into a vicious circle.

    · Share on FacebookShare on Twitter
  • eulabt
    eulabt Member Posts: 194
    edited December 2011

    Peggyj- my dizziness feels like my head is spinning, not the room. It is wierd and very hard to describe to the dr.

     Tacichon- I am a skinny minnie and have gained about 5 pounds. It doesn't sound like a lot, but my clothes are all tight and I refuse to buy a bigger size. I run 5 days a week and do Yoga 3 days. I am training for a half marathon and ran one is Sept. You would think with the amoount of running that I do, that I would be lossing...

    · Share on FacebookShare on Twitter
  • tacichon
    tacichon Member Posts: 93
    edited December 2011

    Shechriple, we are all here to help you!! This sight is great for experiences etc. All the woman I have met on this sight are amazing.. They know what works and what doesn't..

    Hugs and Blessings,

    Terri 

    · Share on FacebookShare on Twitter
  • tacichon
    tacichon Member Posts: 93
    edited December 2011

    Smithy, thanks for the tip on Kefir, I will definetly try it.

     All you woman are amazing!! Thank all so much for your response to my post. It is nice to know other women have symptons like me.

    Hugs and Blessings

    Terri

    · Share on FacebookShare on Twitter
  • tacichon
    tacichon Member Posts: 93
    edited December 2011

    Eulabt. I know exactly what you are talking about I do an hour of advanced step areobics 5 to 6 times a week, I even raised my bench up to 6 inches and have 2 lb weights on my hands. My clothes are tight and I refuse to buy more. I am not a skinny minnie, but average size 10.  My Onc says I will even out in about 4 months.. We shall see. Since I had allot of DCIS multi focal and my left breast was benign I am at high risk of getting this back if I don't take the TMX. I would think as modern as medicine is they would have some thing better.. but then again my radioligist technicians said "Cancer is a bitch" and boy am I finding that out! Good luck with marathon!

    Hugs and Blessings!

    Terri

    · Share on FacebookShare on Twitter
  • tacichon
    tacichon Member Posts: 93
    edited December 2011

    Tammy, Thank you so  much, I hope have the same results as  you do!! I am praying..

    Hugs and Blessings

    Terri

    · Share on FacebookShare on Twitter
  • eulabt
    eulabt Member Posts: 194
    edited December 2011

    Terri,

    This weight thing drives me crazy. I am a size 2, so most people would tell me to be happy, but this is not something that I chose. I run 25 miles a week and do Hot Yoga for 1 1/4 hours 3 times a week. Doesn't sound like someone who should be gaining weight:( 

    · Share on FacebookShare on Twitter
  • tacichon
    tacichon Member Posts: 93
    edited December 2011

    Eulabt, I understand you did not choose to be a size 2 my nephews wife is a size 2. Everything is relative. People tell me I look great and they don't see any weight gain at all, but I think it is more the feeling of the bloating and our clothes being tight. To me if I don't feel good, I  don't  think  I look good, that is in our heads. I am getting ready to raise my  step aerobics bench tonight to 8 inches!! I hope I don't kill myself.

    Hugs and Blessings,

    Terri

    · Share on FacebookShare on Twitter
  • tgisiner
    tgisiner Member Posts: 69
    edited December 2011

    Terri,

     I think things started getting better after about 2-3 months. Hopefully you'll have the same.  :)


    Tammy

    · Share on FacebookShare on Twitter
  • BettyBoo
    BettyBoo Member Posts: 72
    edited January 2012

    Terri, hope it gets better for you. I have stopped the tamoxifen after a month, my medical team doesn't know, that was 18 months ago.

    · Share on FacebookShare on Twitter
  • mari65
    mari65 Member Posts: 131
    edited December 2011

    I stopped taking Tamox and never started again. I have yet to tell my med onc.

    · Share on FacebookShare on Twitter

Categories