This Tamoxifen sucks!

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  • Druanne
    Druanne Member Posts: 295
    edited January 2012

    I am not looking forward to taking Tamoxifen!!!

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  • Ceeztheday
    Ceeztheday Member Posts: 403
    edited January 2012

    I have been on tamoxifen since August 4th. I have gained about 5 pounds, but that could have been due to the holidays. Lol. My primary SE are hot flashes and night sweats. I wake up every 2-3 hours very hot and sweaty. If if does not get worse, I can deal with it, but it is definitely disruptive to sleep. So far, no other SE (fingers crossed).

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  • vickilf
    vickilf Member Posts: 95
    edited January 2012

    I stopped taking Tamox after 8 days. I had terrible stabbing pains again, which I had taking Statin drugs (cholestrol medication) and ended up with permenant nerve and muscle damage. Severe stabbing pains in my stomach, tired, felt crappy, no energy at all.   MY oncologist never mentioned people that are diabetic, high blood pressure it increases your change of having a blood clot. It's a hard decision.

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  • jennifer1
    jennifer1 Member Posts: 185
    edited January 2012

    I am not sure what shot.  Was in Tamoxifen hell when I asked about it, desperate.  In April I will be cancer free for two years.  By staying on these pills I continue to let cancer define me.  If it comes back so be it, will fight again.  If it doesnt great.  This is not advice for anyone but what I consider good for myself.  I do believe that they will fix bc in a couple of years so.  The se's from tamoxifen were so bad didnt want to go on.  The others al's I couldnt walk.  My cancer is low grade and I am going to check with doctor about return rate.  There is a good chance this is only adding a few percentage points.  Anyway its a New Year, happy one to all of you, and I promised myself to have a good one.

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  • tacichon
    tacichon Member Posts: 93
    edited January 2012

    June2268, Thank you so much.. I am going to keep on it as I have little choice. When I had my regular mammogram, last year my left breast was benign.. Every Dr told me I was at high risk. I can handle most of the SE's except for the constipation, that is horrible. I started miralax last Tuesday and was cleaned out by the weekend. So did not take anymore, but today starting to feel that stopped up feeling again... I just was to be regular..

    I am going to stick with it.

    Happy New Year. hugs and blessings

    Terri

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  • tacichon
    tacichon Member Posts: 93
    edited January 2012

    My side effects started after 3 weeks, mostly I noticed my eyelids very red and eyes dry. Then the constipation started.. I could not understand why I was so bloated as I do eat a healthy diet, lots of greens...

    Terri

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  • Eileenohio
    Eileenohio Member Posts: 460
    edited January 2012

    do you mean 4 MM vs 4 CM? I did not think that 4CM could be stage 0.   Just wondering. Wow,this Tamoxifen sounds wicked..I pray that I don't have to take it.  Hugs Eileen

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  • ProudMom_Wife
    ProudMom_Wife Member Posts: 634
    edited January 2012

    Just wanted to throw this out there. I too experiience SEs, but am learning to manage them.  One way was by accident.  I was starting to experience really bad joint pain, which kept getting worse and worse, and I was trying different things to address it, but didn't find total relief.  Then when I went to fill my prescription for the 5th time and my pharmacy filled it with tamoxifen from a different manufacturer for some unknown reason. Within a week my joint pain went away.  

    It has been mentioned on a few threads that some of the SEs (particularly joint pain) could also be a result of the fillers used by different manufacturers for Tamoxifen (since it is now generic).

    Try and switch manufacturers and see if it makes a difference. I now have a standing order with the pharmacy to only fill my prescriptions with Tamoxifen manufactured from a specific company. If I start having issues again I will try another manufacturer.

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited January 2012

    Jennifer, I just wanted to address this statement: "If it comes back so be it, will fight again.  If it doesnt great."

    I also asked my doctor why we couldn't just deal with it if it came back instead of doing lousy chemo now. The problem is, if it comes back, it is very likely to be terminal. As in, not curable, and extremely difficult to push into remission.  The stats on patients with mets is not pretty.  This is why, I believe, the doctors are not as compassionate as they should be on the SEs issue.  As I've said, constipation, back pain, and other issues related to these drugs can't really be compared to losing a life (per se, of course...these can be life altering SEs.)

    Just wanted to make sure you understood this.  I am not speaking down to you, I honestly didn't understand at the time of my diagnosis. 

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited January 2012

    Proudmom

    Which manufacturer of Tamoxifen were you on and which did you switch to?

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  • tacichon
    tacichon Member Posts: 93
    edited January 2012

    EileenOhio, yes I was stage 0, I trust my Dr and the pathologist on the diagnosis. Where did you hear 4CM could not be stage 0?

    Hugs and Blessings

    Terri

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  • sweetbean
    sweetbean Member Posts: 1,931
    edited January 2012

    Eileen, if the cancer is DCIS, it is considered Stage 0, no matter the size.  If it were invasive at all, it would be considered Stage II.

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  • ProudMom_Wife
    ProudMom_Wife Member Posts: 634
    edited January 2012
    gentianviolet - I was originally given Tamoxifen manufactured by Teva, then my pharmacy switched me for some unknown reason, probably just supply stuff, to Tamoxifen manufactured by Mylan.  Honestly within a week the joint pain was gone, so now they are only using that manufacture to fill my prescription.  I am not minimizing in any way the SEs from Tamoxifen, they are real and can be very severe in some people, but I think some of the SEs I was experiencing was a reaction to the fillers, or combination of fillers used by Teva, because once I was switched things got better in a very quick time frame.  Hopefully I won't develop any issus with the manufacturer, but if I do I will try another to see if it makes a difference.
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  • gentianviolet
    gentianviolet Member Posts: 316
    edited January 2012

    ProudMom -Thank you for this information.  I did call my pharmacy and asked them to fill my next Tamoxifen from a different manufacturer.  I am willing to give it a shot, maybe it will help, maybe not.  In the meantime I have doubled my fish oil and that has help diminish the pain by about 50%.  If I could get rid of all the pain I would be so grateful.......thanks again for the manufacturers names.

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  • Eileenohio
    Eileenohio Member Posts: 460
    edited January 2012

    thanks  for the info.  I did not know that..

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  • nanzy
    nanzy Member Posts: 13
    edited January 2012

      Anyone on tamoxifen and have knee , or joint pain? I have been on this drug for 6 months, and i am a little worried now.

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  • Mina1
    Mina1 Member Posts: 50
    edited January 2012

    I am so glad I found this thread. I can not think, concentrate problem sove while on Tamoxifen. My body feels heavy and it is hard to move. I am tired all the time, pelvic pain, weight gain, and have joint pain. I have difficulty seeing in my contact lenses. It is a misreable existence and i am just on 10 mg of Tamoxifen. I am scared to go up to 20 because of the side effects. There is no quality of life. This feels like /chemo brain and I never had chemo. Anybody else having cognitive issues?

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  • cycle-path
    cycle-path Member Posts: 1,502
    edited January 2012

    Mina and nanzy, have either of you tried taking Tamoxifen from a different manufacturer? Many women here have SEs on the Tamox from one manufacturer, but not on the same drug made by a different company.

    Check this thread: http://community.breastcancer.org/forum/78/topic/780358?page=1#top 

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  • tacichon
    tacichon Member Posts: 93
    edited January 2012

    I decided to go off the tamoxifen. I met with my my MO. She did acknowledge the side effects. After meeting with her, the next morning I just could not take that pill again. Well now I found out it takes 14 days to stop the side effects. I thought I had IBS, so I saw my PCP, as I had really bad bloating and gas and a clear vaginal discharge. Now I just have to wait for this devil of a drug to get out of my body!

    I have upped the greens and doing step aerobics 5 times a week, also taking organic flax.

    I would think after 30 years of dispensing this drug, they would have come up with something better..

    All of you women are amazing to me!!

    Hugs and blessing to all

    Terri 

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  • eulabt
    eulabt Member Posts: 194
    edited January 2012

    Terri,

    It took me 6 weeks to feel better off the Tamoxifen. I am one of those people that it takes for ever to get drugs out of their systems. I have been off for 8 weeks and have to decide next week with my Onco what my next step is.

    Eula 

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  • vettegal
    vettegal Member Posts: 287
    edited January 2012

    I have taken tamox now for 3.5 years. Trust me I cant wait till I take my last one july 1, 2013

    My dr wanted me to go on AI and I said NOPE and I came in with a folder of all the side effects and he said ok. I had an hysterctomy (complete). Yes I have bone pain, yes I am moody alot. I have these really bad cramps and diarrhea (sp) thought it was from me being celiac(gluten) BUT after

    reading these posts it might be a side effect of the tamox.  

    I do get the dizziness thing it almost like euphoria, most of the time it happens when I am out shopping with alot of bright lights....Cool 

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited January 2012

    Vettegal-I get the dizziness/euphoria you descibed. I was hoping it was temporary since I've only been on it for 3 months. I seldom drink, but occasionally if I have dinner at a friend's house, I might. My head really starts swimming when I do. Some days I'm afraid to drive. I don't think I can pass a sobriety test sober.

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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited January 2012

    I took Tamoxifen for 4 years and it really didn't bother me but it also didn't work.  Maybe it can only work if you feel rotten.

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  • vettegal
    vettegal Member Posts: 287
    edited January 2012
    Tamox kept my mother alive for longer then we expected also. She lived for 7 years in stage 4 cancer. When she was diag. she was already in stage 3b. huge tumor and 11 lymph nodes also had cancer in them. She lived for 15 years before she died june 2010.  We knew the cancer was going to spread but we didnt know where. The liver finally did her in.Frown
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  • kayfh
    kayfh Member Posts: 790
    edited January 2012

    A question:  If you are ER- why were you prescribed Tamox?  Kay

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  • kayfh
    kayfh Member Posts: 790
    edited January 2012

    Terri:  I went to your profile after I posted the one ahead and it indicates you are ER+ but the initial post says ER-.  MMMM  Kay

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  • DJL
    DJL Member Posts: 84
    edited January 2012

    I couldn't take the Tamox, so the Onco started me on Aramasin (don't have the bottle right on front of me, so I'mnot sure it is spelled correctly). The Tamoxifin made me have nausea and headaches all the time. The drug change has helped but now I am like some others have posted - dealing with weight gain. I don't feel like I am eating more, but I sure am putting pounds on the scale. I feel like my stomach is where it is all going and I never had a weight problem in that area before.

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  • vettegal
    vettegal Member Posts: 287
    edited January 2012
    I just changed health insurance at work and I was on the Teva generic of tamox. Now Walgreens does not take UPMC for insurance and I call Giant Eagle and they have Watson. SO, I will be letting everyone know if the side effects are any different. I have been on Teva for over 3.5 years and if my joint pain goes away and because I switched...I will be the happy person!!Laughing I start taking next weeek....will keep you all posted!!!
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  • vettegal
    vettegal Member Posts: 287
    edited January 2012

    Update: mylan is what they have. I will see what happens in a week! Will you keep you posted.

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  • cycle-path
    cycle-path Member Posts: 1,502
    edited January 2012

    Vettegal, I'm very interested in any changes you notice! Please keep us updated.

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