Tamoxifen and the myriad of side effects.........

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Emrach
Emrach Member Posts: 5
edited May 2015 in Hormonal Therapy - Before, During, and After

Hi, wondering if anyone can share some of their experiences of Tamoxifen.

I am 31years old, with no family history of cancer and was diagnosed with an ER+ Stage 2 Invasive Lobular Cancer in my breast. I had a lumpectomy Oct 2014 followed by radiotherapy and am currently on Tamoxifen. I am an extremely physically active person so to say that these tablets have slowed me down some what is an understatement. I am experiencing intermittent bleeding, which can be extremely heavy at times (im told this is normal). I am so tearful its ridiculous, when im not tearful I am angry. My muscles ache, my joints are throbbing and I seem to have an incessantly sore throat and glands in my neck which seem to go up and down daily, it seems like ive got constant mucus on chest? The hot flushes are like clockwork, as are the cramps. I have zero energy and feel very unmotivated about anything (which is not me) Are there any other people who have taken or are taking these tablets and can they shed some light on their experiences, when I have asked onc / gp and you tend to get told that its to be expected.....thinking maybe half the dose could be an option? There seems to be limited research / data on people in their 30s and their treatment. Hope someone can help..............:(

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2015

    Dear Emrach,

    We are sorry that you are having such difficult side effects with Tamoxifen. We are glad that you reached out to us. You may want to check out this link to our website that discusses Hormone Therapy in general. You also may want to visit the forum for those who areYoung with Breast Cancer. Keep us posted. The Mods

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  • politicomama
    politicomama Member Posts: 187
    edited April 2015

    I am about 1.5 years into Tamoxifen. I have the aches and pains, and just recently started having cycles again after a two year absence. Have you been to your OBGYN for the bleeding? Mine is overly cautious and although my blood tests came back that I am no longer in menopause we are still doing a D and C. I agree that there does not seem to be a ton of good research done on those of us under 40. I was 32 at diagnosis, 33 when I started taking it, and I am 35 now.

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited April 2015

    I was 52 & perimenopausal when starting Tamoxifen. I have no idea if I'm menopausal at this point. None of my doctors have offered to check hormone levels. I hear the tests are unreliable, so I haven't asked. The only reason I would pursue this would be to switch to an AI. Those carry their own SE risks.

    I've completed 3 1/2 yrs of Tamox. SEs come & go but overall have improved. The emotional SE has recently come back. I cry at anything remotely sad or even if someone does something remotely nice.

    I was told by my MO that I could reduce my dosage to 10mg(or 15mg). I did for a short while but went back up to 20mg. The only SE that was appreciably better, on the lower dose,was my pelvic pain/cramping.

    I'm considering taking 10mg for my last year. Perhaps it will make my current GYN issues slow down. Mostly polyp growing.

    I still work out everyday. I still run & just bought a new bike(so will be riding more). I also use my gym membership more than ever. My fitness has declined some since BC. My thoughts on that are if there was a lot of room for improving your fitness, you can probably do so following BC. But if your fitness level is pretty high, it will probably take a hit. I have no scientific studies to back this up.

    Hopefully things will improve SEwise for you. I get what you are saying, even though I'm 20yr older. Working out has always been important to me.

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  • Emrach
    Emrach Member Posts: 5
    edited April 2015

    Thank you will check that link out :)

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  • Emrach
    Emrach Member Posts: 5
    edited April 2015

    Hi, politicomama Thank you for replying, I have spoken to Breast Care Nurse who has liaised with Onc. as getting to see her is so hard. They are not overly concerned that I am bleeding on and off atm as its my first few months taking it, but I did see GP and he has referred me for an ultrasound anyway just to check downstairs!! I have a non-hormonal coil which has been there for a few years so again that may be contributing? Im not sure the trouble is everyone is different and all I know is that I was unable to get on with any hormone based contraceptive pill, so no surprise body is acting up!! I am also having a blood test to check calcium levels, full blood count and a U&E for a constant sore throat, im not sure what a U&E is? I do athletics and have always had tender joints in my feet but this is ridiculous its like they arthritic!! Again dr said lets see what the bloods come back like and take it from there, I do take supplements to try help. What do you mean by D & C?

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  • Emrach
    Emrach Member Posts: 5
    edited April 2015

    Hi coraleliz, Thats interesting about the dosage, I guess it maybe a case of trial and error, I need to give this time so my body can adapt and go from there. ....Im glad you are remaining fit though, however the motivation can be hard at times, I have always been extremely routine dependent, some may say slightly OCD so from having to interrupt my training regime with getting rid of this horrid disease, then try to maintain 'normality' there are times when you think I just cant do this!!!

    Are the polyp's growing caused by the tam, or is that something you were susceptable to anyway?

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited April 2015

    emrach- I never had a polyp prior to being on the tamox. My GYN tells me I will keep growing them as long as I'm on the drug. After having the polyps removed surgically, I grow another one or two. I get some funky bleeding & cramping(complete with PMS) but I think that's from my lining getting too thick. When I have my polyps removed, they always do a D&C. It's other name is dilation and curettage. Basically the lining is scraped away during surgery. Afterwards my bleeding & cramping go away for awhile.

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  • scvmom65
    scvmom65 Member Posts: 88
    edited April 2015

    I was on Tamoxifen for almost 2 years before being forced off due to having ovarian cysts. Since then I had my ovaries removed so I am in full blown menopause. The hot flashes are the same for me but less joint paint, less brain fog and I lost 10 of the 13 lbs I gained on it. I had my uterus removed prior to my dx due to a fibroid so I dont have experience with the cramping/bleeding, sorry.


    Anna

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  • Tiffcham
    Tiffcham Member Posts: 1
    edited May 2015

    So I started tamoxifen on April 1st (so its been a month). Since starting it I have felt just “off”. I know it can case a variety of side effects but to me something just does not feel right. It seems as if every few days I will have a day that I just feel like garbage. Like that beginning of a bad cold or flu where you have aches and chills and you are just exhausted. This seems to happen every few days. Then I go to bed early and when I wake up the next day for the most part I am perfectly fine. I also have times where I feel like I am short of breath. This also comes and goes. And it is not when I am trying to do something. I can be when I just sitting. Most recently, (yesterday) I coughed all day (feeling short of breath) and ran a 101.5 temp. Maybe I am on the verge catching something but so far this morning I feel ok.

    I share these thoughts with other BC patients and they tell me its just my body dealing with everything it’s ben through. Ok, I get that BUT I was diagnosed last April with Stage 2 IDC and DCIS, I was triple positive so I went through 6 treatments with 4 different chemo meds in 1 day (8 hour treatments). Then had my double mastectomy, followed that up with radiation. Still doing Herceptin every 3 weeks ( Until July). And during all that my body responded like a champ. I mean I had my days after chemo that I felt like crap but then I bounced back quick. My doc said I should be like a Poster Child for the drug companies since I responded so well and did so well through everything. So to just the thought “this is just a reaction from what your body had been through” is tough for me.

    Anyone have thoughts?

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