Revisiting Tamoxifen’s Side-effects

August 13, 2014, was my one-year cancerversary of the day cancer was cut out of my body through bilateral mastectomy. At that milestone I began to question my decision of quitting the hormone blocker, for the simple reason that so many people in my family have had or succumbed to cancer. I began to fear my decision to stop Tamoxifen could be increasing my chances of cancer recurring.

I was happy to be alive on that anniversary, making it through the year of multiple visits to the breast surgeon, oncologist and plastic surgeon. I was content to sever the relationship with my breasts and not require chemo or radiation. But I began to fear death, a fear which I believe I absolutely, totally ignored during that year as I focused on becoming “whole” again.

I honestly never gave a thought to dying. Dying was an unacceptable outcome and I never entertained any thoughts about what life might be like for my husband and children if I were to die. I closed that path of thinking, sealed it with impenetrable, air-tight, thought-proof doors. But, for some reason, a month after my first cancerversary, on my birthday, all of my fears came rushing to the forefront of my brain and for the first time since my diagnosis, I feared death and decided that I had better quit gambling with my life and start taking my hormone blocker, Tamoxifen, again.

Tamoxifen is an estrogen blocker and should work well in preventing any recurrence of my type of breast cancer, it is the same drug that my mother took for the rest of her life when she had breast cancer. By the way, Mom lived to be 92. So, once again, I began taking Tamoxifen, convincing myself that there must have been other reasons for my side effects, which I had not documented.

TamoxRetinaDis

List of Tamoxifen side-effects
Disease of Retina of the Eye

TamoxCatrcts

List of Tamoxifen side-effects
Cataracts – Severe

June 12, 2014, I was diagnosed with a macular hole; that diagnosis was the beginning of three eye surgeries, the first, to repair the macular hole, the second, cataract surgery on that same eye – cataracts typically develop after macular hole surgery. The third surgery was to remove a cataract from the other eye. Note – cataracts are considered a “severe” side-effect of Tamoxifen. Cornea disease and blood clots of the retina are also possible severe side-effects of Tamoxifen. I can only pray that I do not suffer more eye problems as a result of taking this drug.

Feeling weak, vaginal dryness, weight gain, blood clots, stroke, high calcium in the blood, depression and high triglycerides are but a few of Tamoxifen’s other possible side-effects. Of these, I have experienced fatigue, vaginal dryness, weight gain, depression and through the results of a recent blood test, triglycerides that are off the chart!

Besides an unbelievable history of cancer in my family, there is also an outstanding incidence of stroke and heart disease. I was nearly blown into another reality when I saw the results of my recent blood test! That was it! I made my final, hopefully life-saving, decision to stop taking Tamoxifen. Weighing the odds of which disease to die from, as if I have a choice, I feared living life as a partially paralyzed stroke patient (like some relatives of mine) or a BLIND, paralyzed stroke victim.

guntoHeadI feel it’s almost like choosing my own death which is ridiculous, I mean, a plane could drop out of the sky and land on me in my backyard, or more than likely, I could die in a car wreck. But, if those things do not happen, I choose to make the most of my life in between now and my eventual, inevitable demise. I choose to NOT suffer Tamoxifen’s side-effects any longer.

I might still end up with cancer, I might still end up with heart disease, but, if it is due to my genes, that is out of my control, some day it may not be uncontrollable but for now, it is. I am supervising control insofar as lessening the chances of further and worsening incidents of Tamoxifen’s side-effects, by not taking the drug anymore.

Note to self: Remember! Mark this in memory that I have written this experience so that I do not forget “why” I have chosen to stop Tamoxifen.

Here is the Hormone Blocker Effects (in xls format, readable in Libre or Open Office Calc) document I compiled, comparing Tamoxifen’s side-effects to the other hormone blockers offered to women like me. I found Tamoxifen’s side-effects to be a shorter list than the other drugs’ side-effects.

BAR_LINE2

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23 responses to “Revisiting Tamoxifen’s Side-effects

  1. I quit all the hormone blockers — one after another. Tamoxifen was the last of the batch. They all made me sick. Meanwhile, the difference in statistical likelihood of recurrence of the cancer was insignificant.

    Do I worry? Yes. Am I scared? Very. But I also wonder how much all those drugs I DID take had to do with the demise of my heart three years later after the cancer. No one is ready to address my questions on that.

    Every drug has side effects. All of them. Whether they tell us what they are or not, who knows? But nothing is “free.”

    Liked by 1 person

    • I agree with you, the damage being done by these drugs are more frightening to me than the fear of cancer’s return, especially when the drug is affecting my eyes and possible heart issues. I’ll bet you are right to associate your heart problem with the drugs.

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  2. My onc took me off Tamoxifen when it gave me a blood clot and put me on Arimidex. So far I’ve had no problems and that’s been since April, 2012.

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  3. I understand — death is inevitable, anyway. Scary? I suppose so. After watching what my dad went through, I began to see death as no big deal for the dead person; hard for those who remain behind. I think that might be what we fear with fearing death, besides fearing the unknown, that we will cause pain to those we love.

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  4. I used to laugh at those ads on TV that listed all those side effects. But after cancer, having to choose and find the least horrible drug or treatment is just a matter of course now.

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    • No kidding! The only other drug I am on now, since cold-turkey stopping Tamoxifen, is Effexor, an anti-depressant which also had side-effects but nothing life-threatening like Tamoxifen, but, I’m tapering off of that too. Heck, it’s just not worth it.

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      • Effexor is the drug that finally made them put me down as allergic to ALL serotonin reuptake inhibitors. I don’t even know if it worked on moods … all I remember is that my head felt like it was going to split open and my brains would fall out.

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        • Holy sugar pills Batman! I wasn’t aware of that type of allergy and I am starting to wonder if maybe I have a sensitivity to them as well. I’ve gone down from 150mg to 75mg and in the evenings, I have had awful headaches.

          I know that the drug has done something to my moods, more like turning the “I give a sh**” switch off . It’s been like a hazy existence, hazy and lazy. My goal is to get totally off of it.

          Did you switch to a different “type” of antidepressant? If so, what was it and how did it work?

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          • Migraines are a serious side effects and apparently signal the potential for a stroke. I had the headache from hell the entire time I was on Effexor. I didn’t connect the dots. My doctor did. I can’t take any of that class of drugs. Whatever the mood swing issues, a migraine makes them seem minor. And I thought I’d like to not have a stroke.

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            • Did you cold-turkey yourself off of them or wean yourself and how long before your side-effects were gone?

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              • Cold turkey. The doctor was more afraid of stroke than withdrawal. But I had no withdrawal … just that the headache went away pretty much immediately, like within a couple of days. Not having a pounding headache significantly improved my mood. And THAT’s why I don’t take any of those drugs. When I first started on Prozac, it worked for about 6 months. Then it didn’t work any more. I went to the next one, and the next and the next, and the headaches started to show up. One every few days, every other day. When he put me on Effexor, the headache became my constant companion. I had no idea how I felt about anything except that pain in my head. So, now, I have some anti anxiety/sleep meds (Lorezepam) and some amphetamines (very low doses) which actually do make me feel a bit less down in the dumps and have pretty much no side effects in low doses. And I’m getting old, post menopause. Most mood-related problems are better when the monthly hormonal shift stops. Anyway, all women are psycho during menopause, so who can tell who’s crazy and who is *merely* menopausal?

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                • Thank you so much, Marilyn for giving me all of this information of your experience with these anti-depressants. Strokes are more frightening to me than cancer and insofar as depression, oh well, walking on my treadmill will boost my endorphins and I need to be happy with that.

                  I quit the Tamoxifen on Friday, also reduced my Effexor from 150mg to 75mg and have had headaches, not migraines, but just headaches, which is unusual because I never, ever get headaches. But, they come and go. I’m so tempted to cold-turkey the effexor. When I think about how it made me feel when I first started it, it was always a “foggy” feeling.

                  I’m post-menopause too, I don’t think, or didn’t think I was still under the influence of those god-awful mood swings! Man oh man, I was nuts!

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                  • Every time I hear a man talk about “male menopause,” I want to give dope-slap him into submission. Male menopause. Try REAL menopause. It was hideous and felt like it went on forever. I’m just glad I didn’t get suckered into taking hormone replacement. I got cancer anyway … maybe I could have gotten a much worse form of it. They prescribe all this shit … and THEN they discover the side effects. Meanwhile, they’re killing us.

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                  • Every time I hear a man talk about “male menopause,” I want to dope-slap him into submission. Male menopause, my left eyeball. Try REAL menopause. It was hideous and felt like it went on forever. I’m glad I didn’t get suckered into hormone replacement. I got cancer anyway … maybe I could have gotten a much worse form of it. They prescribe all this shit … and THEN they discover the side effects. Meanwhile, they’re killing us.

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  5. Hi there dear Swoosie, I don’t know much about this medicine/ hormone blocker than what you have mentioned here, neither do I claim to know much about what you are going through. I just came here after my unannounced break to check up on you and see what you have been up to. I’m sorry that you had such a hard time. All I can do is wish you well with all the decisions you make. Lots and lots of love and hugs your way.
    Zee ❤

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  6. Swoosie, thanks for the follow. I agree with your decision and I have both breast cancer and ovarian cancer, both advanced. And I’m fighting them both conventionally, have already done the poison, slash and burn techniques, each of which have left me in a much better place than I was before. But there’s something about long term medications which have to be carefully considered when side effects occur. I was supposed to take an aromatase inhibitor, similar to tamoxifen, which left me so sick that if I want any quality of life, this would not allow it. Like yours, this was an unheard of reaction. My doctor looked at me skeptically, “you got that sick?” So I might possibly live a little longer with my cancer being sick all the time? I don’t think so. I haven’t finally decided, still thinking about trying again, as maybe it was just coincidental I got sick (2x?)…lol…but good for you. There are worse things than cancer. I, too, would rather have cancer than a debilitating stroke. So much good luck to you!!!

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    • Arimidex was the first hormone blocker that I tried but the side effects were nearly immediate, so I asked to be switched to Tamoxifen which had been prescribed to my mother and she took with no problem for years! But, we each have to make our own decision of how we want to l-i-v-e, which is most important.
      Thanks so much for visiting! Keep strong!

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      • It is very frustrating, knowing that many take these with few side effects and particularly in your case, your own mother did, and we have to be the “weirdos” which I never, ever am. I’m one of those people that nothing bothers me…no allergies, hardly any side effects, no pain to speak of, and this eensy, I mean like a grain of sand sized pill brought me to my knees!!! Oh, well. Onward and upward….I’m trying to keep strong, just want this winter over…lol!!!

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