This Tamoxifen sucks!

tacichon

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

jancie

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. 

tacichon

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

Thank you and hugs,

Terri 

tacichon

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

Hugs,

Terri

sweetbean

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.)

tacichon

 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

tgisiner

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

cycle-path

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.

tacichon

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 

jancie

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.

Bren-2007

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

eulabt

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.

machfowler

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.

tacichon

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 

tacichon

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

peggy_j

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 

B123

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!!!

Smithy

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.

SheChirple

Aw, jees, I am so scared of Tomax.

Mandalala

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.

eulabt

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...

tacichon

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 

tacichon

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

tacichon

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

tacichon

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

Hugs and Blessings

Terri

eulabt

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:( 

tacichon

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

tgisiner

Terri,

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

Tammy

BettyBoo

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.

mari65

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

rhonda2011

I just started tamox 3 weeks ago... i have a constant headache and muscle cramps that started in my legs and now in my fingers.   i dont want to be like this for 5 years