My Little Bs Have the Big C

A Breast Cancer Blog For Young Women

A 10 Year Sentence

7 Comments

Photo from cartoonstock.com

Photo from cartoonstock.com

Chemo sucks.  Radiation sucks, too.  But one thing I can say about them is that they are administered for a relatively short time.  Their effects can last far beyond the end of treatment but the hell endured during treatment ends soon after the last dose is given.

To prevent my cancer from growing any further, I have gotten a mastectomy with axillary lymph node removal, five months of chemotherapy, three weeks of radiation and a year of Herceptin infusions for my clinical trial.  The next and, I think, final method of prevention is Tamoxifen, a pill I need to take every day for the next 10 years.

Tamoxifen is a form of hormone therapy that is used for women who have a breast cancer that is estrogen receptor positive (ER+).  When a breast cancer is ER+ it means that it feeds off estrogen like cookie monster at an Oreo factory.  Tamoxifen attaches to the attaches to the hormone receptor in the cancer cell and blocks estrogen from attaching to that receptor, denying the cancer of it’s favorite treat.

photo from riverpharmacy.ca

photo from riverpharmacy.ca

Image from Susan G. Komen

Image from Susan G. Komen

The benefits of Tamoxifen can last long after the last pill is taken.  According to an article on the Susan G. Komen website “findings from a large randomized clinical trial showed that taking tamoxifen for an additional five years (for a total of 10 years) further reduced the risk of breast cancer recurrence and death [60]. For this reason, there is increasing use of treatment with tamoxifen for more than five years, especially among premenopausal women who cannot take aromatase inhibitors.”  That is why almost all women with ER+ breast cancer will be offered the pill.  It can also be used as a preventative for women who have not developed breast cancer but are considered high risk.

Side effects of Tamoxifen can include hot flashes, night sweats, vaginal dryness, weight gain, disruption of the menstrual cycle, risk of blood clots, stroke, cataracts, mood swings, bone loss and risk of endometrian and uteran cancers.  Premenopausal women are advised to not get pregnant while taking Tamoxifen due to potential harm of the fetus so using those eggs I harvested and saved is out of the question.

I have been experiencing hot flashes since my third chemotherapy treatment but they were starting to subside with time.  Ever since starting Tamoxifen, my instance of hot flashes and night sweats have increased.  I have also been experiencing insomnia for the first time in my life and/or restless, interrupted sleep, likely as a result of the the discomfort from the night sweats.  I try to wear light pajamas to bed and we now use a fan with the window open.  This has lessened the severity of the night sweats however I still wake up clammy but very cold…and hot at the same time.

I don’t know how long these side effects will last.  I hope that I will not have to endure ten years of waking up in sweat soaked pajamas.  I don’t think I could live like that.  The question is, do the benefits outweigh the side effects?  Oncologists seem to think so.

So far, I have served a month and a half of my Tamoxifen sentence.  Nine years and ten and a half months to go.

If you have been on Tamoxifen, what strategies have you used to combat the side effects?  Do they change over time?

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7 thoughts on “A 10 Year Sentence

  1. My mom is on gleevec for her leukemia and will need to take it pretty much forever. However, she experiences symptoms of numbness and tingling in the hands and feet, extreme muscle cramping, nausea and indigestion, swelling to the face, eyes and feet and the most difficulty she has is with chronic diarrhea. Honestly, some days are better than others. Some days are just not so good. I think it’s important to give yourself a break. It’s ok to have not so great days. I think a big part for my mother has been accepting that she chose this option over others and this was by far the better choice for her. We, her family, also try to do whatever we can to support her – even when we know that we couldn’t possibly know what she’s going through. We all just keep trying, keep discovering, and keep persevering the best way we know how. But we also try to show grace for those days that just don’t turn out and pray for a better day tomorrow. Hope you find all the tricks and tools to have an abundance of strategies to carry you through this phase!

    • I guess I’m still getting used to the idea that cancer is a lifelong experience. I don’t think I really understood this until recently. I’m coming to terms with this and, as a result, am having some not so good days.

  2. I remember staring at that Tamoxifen container for a while before taking the first pill. I had my doubts in taking it — I was afraid of it. The uterus side effect was what scared me the most because 1) I hate GYN-related stuff and 2) I don’t have children.

    Luckily, I haven’t experienced any serious side effects. (I pray it stays that way.) I get my vaginal ultrasounds 2x a year to check the uterus and ovaries (not fun). The one thing that has affected me is the vagina dryness. A lot. I have tried using moisturizers but so far I’ve been allergic to Replens. Need to try a new one. Important to use the ones with no hormones, been told.

    I check my eyes 2x a year to check for cataracts — so far so good.

    My mood is all over the place at times, but OK, because I am a woman with hormones. I don’t do anything for this.

    Recently, my bones have been hurting a little, especially the knees. Could be related to Tamoxifen, hopefully. Doing nothing about it, yet. May request a bone scan if it gets worse.

    This year I will be approaching my 4th year on Tamoxifen (end of the year). I don’t know what to do about the 10 year thing…I might take a break after 5, if I am lucky.

    At least there is a treatment option for us. Good luck with Tamoxifen.

    • Yes, I am very grateful for Tamoxifen and the chances at survival it gives me. It’s just daunting to think about taking a pill for 10 years and the possible ramifications of that. Cancer just sucks all around.

  3. My sister cites caffeine as heat source.

    • I have a cup of coffee in the morning. Lately, I’ve been having one in the afternoon as well because of the lack of sleep. Maybe I’ll try to eliminate that afternoon coffee to see if it helps. Thank you for letting me know your sister’s trigger.

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