How tamoxifen has affected my life - Share your stories

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charmainejensenvoisine
charmainejensenvoisine Member Posts: 369
edited August 2015 in Hormonal Therapy - Before, During, and After

I was put on 'tamoxifen' after radiation therapy in April 2010 and how I wish when I went to the chemo info session in November 2009 that I had asked more question when the topic of hormonal therapy was brought up. The different side-effects of tamoxifen, particularly that of 'blood clot' was never brought to my attention.

On April 2012 I was rushed to the hospital in respiratory distress by ambulance and had to be bagged all the way there. I was diagnosed with an 18" severe DVT (blood clot) and of which dislodged and went through my heart and into both of my lungs. I was admitted into the hospital and was in ICU for 3 weeks and in Rehab for 3 weeks. I was suppose to remain in the hospital for 3 months, but was stubborn and just could not handle the routine in routine and conned them to discharge me with physiotherapy and homecare. BUT, two days after being in ICU my right lung collapsed and my heart A-Fib.

My life has been completely altered ~ I have occlusion of the veins in the lower left leg and some of the upper leg veins and collateral vessels and can barely walk, even with a walker it is difficult. I am waiting to get in to see a vascular surgeon and also an interventional radiologist. I also have a condition with my heart called ventricular tachycardia and a condition whereas the lobe of my right lung collapse from time to time. I easily become breathless.

There is a good chance that I will need a procedure done on my left leg (whether it be stenting, an IVC filter) I am not certain what they can do 3 years post thrombosis. My left leg from the calf to the pelvis is pretty much always swollen now.

The tamoxifen has ruined my life, but mostly not being informed of the side-effects by the nurse at the hospital is what really destroyed my life.

Is there anybody else that has or is experiencing similar with Tamoxifen and has their life been altered to this degree and what have you done about it? Would really like to hear from other people. Feel free to even leave me a private message if you want to.

Charmaine


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  • Traveltext
    Traveltext Member Posts: 2,089
    edited August 2015

    I haven't heard of such extreme reactions to Tamoxifen. Do you suffer from any congenital defects that may have contributed to your problems?



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  • DSW1976
    DSW1976 Member Posts: 118
    edited August 2015

    Charmaine,,  So sorry what you have been thru ....I myself find it hard to get any info except on alt med threads as to anti tomaxifan. I am deathly afraid of taking it more so than chemo, yet everyone and there mother wants to shove this drug down my throat and God help me if I say Im not sure I am going to be taking it I get the look of I am insane.  Dr.s will only keep saying risks our weigh benefits. Sorry thats not reassuring enough.  Your post came to me as I was waking up for my 3rd  5 min sleep nap at  night I was waking up from since I no longer sleep any more. This problem is top on my list this week my new oncologist was pretty adamant about me taking it since I have an aggressive cancer . My cancer is so aggressive yet they havent scanned me once to see if it spread even tho it already made it to one lymph node and I started having seizures yet I am suposed to take the popular pill that may cause more damage.   I wanted to say thanks for the post..... Im sure the pro tomaxifans will be defending it to no end till it happens to them all drugs are good.  



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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited August 2015

    Charmaine, I'm so sorry you've had so much trouble! When my oncologist was talking to me about Tamoxifen he said there were three major SEs to be aware of: blood clots, cataracts, and endometrial cancer. He said that the most common SEs he sees are: hot flashes, weight gain, and sexual side effects. I'm big into research so I knew that the "major" SEs are not as common as the "minor" SEs. However, there are A LOT of possible SEs, and what the medical community considers "minor" can (and often is) major to the woman experiencing them. I'm in the camp of "give it a try, see how it goes". I took it for 6 weeks and have now stopped. I'm not sure I will start again, actually, I'm still pondering my risk vs reward. I have a low chance of recurrence. My SEs were nothing compared to yours, but in 6 weeks I developed:

    • Damage to my retina (confirmed by my opthamologist) - a "rare" SE
    • Pain in my eyes, blurry vision, floaters - "rare"
    • Ovarian cysts (confirmed by my gyno) - a very common SE for premenopausal women
    • Severe pelvic pain a pressure (the cysts caused most of the pain, I think) - "rare"
    • Severe mood changes (I basically became a raging b!tch when I'm normally extremely unemotional)
    • Leg cramps
    • Severe joint pain (I have a connective tissue disease but my pain was very much increased)
    • Headaches
    • Dry, brittle hair
    • Difficulty concentrating

    I was reading an article the other day that said that more severe SEs for cancer-fighting drugs are accepted in the medical community. However, the people experiencing the SEs are really the judge of that, and many (from what I've read, about half) women stop their hormonal therapy early.

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  • charmainejensenvoisine
    charmainejensenvoisine Member Posts: 369
    edited August 2015

    Reply to 'traveltext'

    At the moment I am unaware of whether or not I suffer from congenital defects that may have lead to my clotting. I am however going to ask for my family physician to refer me to a hematologist, so that I can get a bunch of clotting factor tests done. I left my former family doctor in October 2014, due to the fact that he refused to refer me to a vascular surgeon and a hematologist and he allowed for my health to decline after the severe DVT/ bilateral PE.

    So this would be a good idea to look into.


    Charmaine

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  • charmainejensenvoisine
    charmainejensenvoisine Member Posts: 369
    edited August 2015

    This is your body! You do have the right to have more tests done to verify whether or not the cancer is spreading. If the doctors you have now are not whether to do more scans ~ you think the possibility could exist that you could start looking around for another doctor. I can personally confirm that it is not easy to find a new doctor ~ BUT you got to do what is in the best interest of your health. Legitimately you are entitled to another scan! Demand it! Worse comes to worse, contact the college of physicians and surgeons!

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  • charmainejensenvoisine
    charmainejensenvoisine Member Posts: 369
    edited August 2015

    Sometime in the next few months I am going to get a referral to an opthomologist to confirm whether or not there has been damage to my retina or not due to the chemo drugs and/or tamoxifen.


    Charmaine

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  • Jolyg
    Jolyg Member Posts: 1
    edited August 2015

    I have been on Tamoxifen for 7 months following my double mastectomy/reconstruction and 4 rounds of chemo. Thankfully, I avoided chemo induced menopause. At a recent gyno appointment, I was diagnosed with ovarian cysts - 1 on each ovary. I have previously had a hysterectomy for non-cancer related issues. Unfortunately, not just "Simple" cysts; they have "debris" in them - Hopefully just a hemorrhagic cyst? But no way to know via ultrasound. My Gyno wants to repeat the US in 6 weeks to see if they have changed in size. I am having minor, nagging left ovary pain. Nothing I can't live with. I would like to keep my ovaries if at all possible...I'm only 42! And no chance that I can be on hormone replacement. I have an oncology recheck next week and will talk to the doc about this, but I am finding that cysts maybe not that uncommon in pre-menopausal women on Tamoxifen...? I would appreciate keeping just ONE of my lady parts!! :-/

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  • edwards750
    edwards750 Member Posts: 3,761
    edited August 2015

    OMG you ladies have been to hell and back with this drug. I am so sorry. I was on Arimidex after my Rads treatments but was later DX with borderline osteoporsis so ONC switched me to Tamoxifen. I did know about blood clots being a possible SE and since I had one when I was 16 I questioned whether I should b taking the drug. Arimidex attacks the bones so it became the lesser of the 2 evils. However, my ONC said since I had had 2 children she thought the risk was diminished,

    I have leg cramps every now and then and difficulty concentrating and occasional hot flashes but that's about it. I am 4 years out.

    Drs make me sick with their cavalier attitude about what you should or should not be able to tolerate. Easy for them to say. Also I don't understand how a dr can refuse to refer you to another specialist. Who does he think he is?

    I had the Oncotype test done and my score came back@11 with an 8% chance of recurrence if I take Tamoxifen. There are lots of drugs out there. Surely there is one that won't cause such debilitating side effects. I guess Drs figure it's up to us to find out about the side effects beforehand. My ONC didnt tell me upfront either.

    Good luck.

    Diane

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