Quitting tamoxifen early

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Panmars
Panmars Member Posts: 299
edited October 2015 in Hormonal Therapy - Before, During, and After

Anyone out there decide to quit tamoxifen before the 5 year mark? If so, did you experience any mood changes after quitting? I decided to stop treatment 2 months ago ( after 2 years on it ) due to extreme side effects. I was pre-menopausal when I started, but had my ovaries removed after 6 months on it, due to the tami causing multiple recurring cysts. Also had extreme joint inflammation which required daily prednisone to control. And everyday I felt like I had the flu. It got so bad recently, I could not continue. My oncologist felt it would be ok to stop, as I have a very low chance of recurrence, plus no ovaries. And since I stopped, physically I feel 110% better. But my mood? Not so much. Cranky, irritable, unhappy. WTH? Is this normal?

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  • Crescent5
    Crescent5 Member Posts: 442
    edited July 2013

    Well I would think your mood problems are from the ovary removal. That's instant menopause, and it's not easy on the body.

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited July 2013

    Are you ok with the decision to not take anything, or are you worried about not doing the full 5 years? Could that be affecting your mood? Surprised your MO did not want you to try an AI first since you are now menopausal due to oopherectomy? Did you discuss that?

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  • Panmars
    Panmars Member Posts: 299
    edited July 2013

    My ovaries were removed nearly 2 years ago, so I already went through the instant menopause thing. Not fun, but I got through the worst of it ok. I don't think the mood change is still from that. And I am ok with my decision not to continue the tami. It really was seriously decreasing my quality of life, and with three years to go, I'm not sure I could have withstood it. And the steroids I had to take to control the side effects were causing their own side effects, like increased eye pressure, among other things. I did discuss other drug options with my onco, and she seemed to think that the AI's would be just as harsh, if not more so. I did take everything into consideration and did not make the decision lightly. It made it easier that my onco was ok with it, and we carefully went over the numbers. With 5 years of tami, my recurrence risk is 6%. Without, it's 8%. I know what your thinking.....2% is 2%. But I seem to be one whose body never adjusted to the drug, and the SEs just kept increasing. 2% was just not worth feeling sick 24/7. So, that's that I guess. I did speak with my onco yesterday, explained what was going on. She said my body is adjusting to the changes of being off the tami, and to give it some time. Hopefully things will level off. Thanks for responding to my post. I have always found everyone here to be very kind and supportive. Thanks again.

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited July 2013

    So glad you are comfortable with your decision as is your MO. Helps ease the mind! Maybe your body just needs time to adjust. Sucks, but hopefully that is it. Be good to yourself in the meantime and hope things improve quickly!

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  • wenweb
    wenweb Member Posts: 1,107
    edited July 2013

    Panmars,  I came off Tamoxifen early, and my mood did not improve.  Mostly, I was unhappy and sad.  I agree with Crescent5 that it could be from instant menopause.  For me, it was a wake up call to examine my life.  I realized that all of the things I had "stuffed" deep inside me didn't want to stay there anylonger.  Certainly, getting a cancer diagnosis albeit, not life threatening, was cause to listen to my inner voice.  When I finally heard it, I realized it was shouting at me!!

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2013

    Hi Panmar - This whole thing is such a struggle. I always tell my husband to try living in my hormonal body for a week and then we'll talk! I recently started Tamoxifen, and noticed that Miss Bit*hy was in the house. Maybe it is still in your system?? (I'm grasping at straws.) The thing that has recently helped me was to increase my dosage of Effexor from the lowest 37.5 mg to 75 mg. I'm feeling pretty zen these days, and I love it. I'm looking forward to even moods sans meds after Tamoxifen and menopause.

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  • ShulerD
    ShulerD Member Posts: 2
    edited July 2013

    This is my 3rd drug, I tried Arimidex (Migraines on a daily basis) Femara, Muscle cramping, pain, high blood pressure. Now Tamoxifen, I have been on it about 3 weeks. The fatigue is amazing! The hunger is too! I had Gastric By pass to lose weight and it's very upsetting to see the pounds inch up! The blues have been chasing me for the last week or so and getting worse. Last night.. after discussing it with my husband.. no tamoxifen.. I called my Oncologist to let her know of my decision.. The numbers better be awesome for all this.. I am unwilling to go onto more meds to combat this. I am 3 years out from Chemo.. I am also very scared of blood clots.. my mom had many TIA's before her death. I hated to see what was lost after each one.. 

    I am POST menopausal. I have had a complete hysterectomy and oopherectomy almost 10 years ago.. hot flashes have not been a problem..

    One upsetting Side effect of Arimidex and Femara, was lack of libido.. and pain.. very painful.. we tried the gels AND condoms to help with that.. With Tamoxifen.. so far.. not as bad as Arimidex and Femara.. Keep searching.. I'm going to research doing this nutritionally.. 

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  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2013

    What a cute dog farmer...I am such a dog lover and that one is precious...I am in the Tamoxifen club too. I am getting worried about the SEs because there is a new post on this site from a lady who was just dx with diabetes2 because of Tamoxifen. That is flipping scary. Knock on wood though so far I havent had any debilitating problems with the drug. Sleep issues - but that is as much due to my son's partying as anything else and occasionally have joint problems but other than that no real issues...until the Diabetes dx. This lady is 2 years on Tamoxifen and had normal sugar levels until now. I realize this drug and in fact drugs in general affect people different ways but it is yet another SE to worry about. There is just no end to this. Panmars - I may go the route you are going if my sugar levels are up when I have my blood profile done in a few months. I had an Oncotype score of 11 with an 8% chance of recurrence WITH Tamoxifen. Like you the difference may be 2% or so but dont want to take on Diabetes on top of everything else. When do the SEs offset the value of the drug? I will discuss with my ONC beforehand of course. Good luck...diane

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  • MNSusan
    MNSusan Member Posts: 305
    edited July 2013

    I quit Tamox and the AIs early a few years back.  We were out to dinner with good friends recently and they talked about how much my personality changed while taking them.  I asked them how long it took until they noticed I was feeling better and they said it was a good six months.  They said they dropped us off after an evening out and said to each other, "Susan's back!"  I don't remember it being that cut and dry but I agree it was probably six months before I felt like myself again.

    I hope you feel better very soon.  {{{hugs}}}

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  • Panmars
    Panmars Member Posts: 299
    edited July 2013

    Thanks for all the input ladies! The past few days I have been feeling better, not so moody. I wish I had been one of those women that had only minor SE's with tami, as my preference would be to finish the full 5 years, but it was not to be. When the SE's outweigh the benefits, you have to make a choice. I'm starting to feel like my old self again, the person I was BEFORE cancer. Wishing all of you the best on this long journey. Hugs to all!

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  • MNSusan
    MNSusan Member Posts: 305
    edited July 2013

    Panmars, I just noticed you're in Shakopee.  I'm in Shoreview!  <waving>

    I was also one of those rare women that seemed to have each and every side effect listed.  Ultimately, I discontined the drug at four and a half years after having hives for six months, along with all the other s/e's.  My MO wanted me to take it again this time but finally relented after discussing risks v benefits and quality of life issues.  

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  • Panmars
    Panmars Member Posts: 299
    edited July 2013

    MNSusan, waving back! Yeah, the way I see it is that the extra 2% it gave me against a recurrence was not worth how horrible I felt every day. My MO agreed with me. And with 3 years to go, well, I didn't want to live that way. At least you made it through almost the whole 5 years. That would be tough with severe side effects.

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  • Chantal10
    Chantal10 Member Posts: 105
    edited October 2015

    I'm so unhappy taking tamoxifen. I've been on it now 7 months and have added 10 pounds. My eyes are dry, skin, everything! I just feel miserable. I just don't think the 2% is worth all these side effects, but I have young children and I would feel so guilty I think if I had yet another recurrence and I had stopped taking it. How are you doing? Thanks

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