(by Susan; crossposted at Toddler Planet)

I am so, so tired.

Unbelievably tired.

Tired in my bones tired.

New mom, breastfeeding, up all night tired.

Dissertation-writing graduate student tired.

Struggling writer finishing a manuscript tired.

But without the baby, the dissertation, the manuscript.

Three weeks ago, my oncologist switched my hormone supressing cancer therapy from tamoxifen to aromasin, an aromitase inhibitor. Aromasin, like Arimidex, which you may have heard advertised on the radio or at the 3 day walk, works to prevent recurrence of hormone-positive breast cancer by blocking the production and circulation of estrogen. Aromasin is recommended for post-menopausal women, while tamoxifen is best for pre-menopausal women.

Like most steps of my cancer journey, I fall into the long tail of women who are neither or both, as I was pre-menopausal (and 34) when this all started, but, after 6 months of chemo, 3 years of tamoxifen, and the removal of my ovaries, I am now utterly and thoroughly post-menopausal (and 36). Which hormone suppressant should I take? Nobody knows. There are no studies.

There are no studies.

There are many, many women who have become menopausal through cancer treatment, including many of my IBC sisters, who don’t have any scientific guidance on which hormone suppressant to take. We don’t know whether tamoxifen, which ravages a woman’s hormonal production and causes all kinds of unfortunate side effects (I’m not going to get graphic; my dad reads this blog), or aromasin, which does the same and in addition strips women’s bones of their strength, causing 40 year olds to develop osteoporosis and all of us to be tested annually for early detection, causes untold aches and pains where none were before, and generally wreaks havoc, will work at all for us. It’s not been studied.

So, like the good girl that I’ve always been, I take my medicine, say my prayers, and hope that one or the other (or both) works, and my body can fight off recurrence for a few more years, until I’ve gotten some projects under my belt, published my book, written and published a follow up, raised my children, and checked off some more things on my “bucket list,” all the while knowing that the medication is only “probably” going to work for me, and my sisters in this pre/post menopausal gray zone.

Oh, and did I mention that it causes insomnia?

I have not slept more than two hours at a time, three to four hours a night, in almost three weeks.

But I’m a good girl, and I take my medicine … and pray.

Have you had this experience with aromasin or arimidex? What has helped?


14 Responses to Aromasin

  1. Susan,
    I have been on Aromasin for 3 years. My gynocologist wanted me to switch to Arimidex, I forgot why. When I asked my oncologist he rattled off many statistics as to why Aromasin is the drug of choice… for post menopausal women. One of the reasons being it is the newest. I forgot the percentages but when he told them to me I just said “OK” I will stay on Aromasin. I was never on any other drug after chemo so many of the things I feel I am not sure if it is the Aromasin or menopause, etc. Sometimes my bones ache, so I was told to take 2 Aleve liquid gels at bedtime and it does help. I also know I ache more when I do not exercise. Make sure you are doing weight bearing exercise. They do check my bones when I have my CT scans… I have already shown some loss in my spine. I take 1800mg of calcium daily and recently they upped my Vitamin D to 1000 IUs.The only problem is now I have been having bowel issues and they think it may be from too much calcium. The insomnia may pass… I only have it sometimes. I have stopped caffeine after dinner and I notice that has helped.I also am finding that names escape me more now than before… memory issues can be a problem too… but again that could be menopause too!

    • whymommy says:

      Oh, geez, I’m not doing any exercise right now because my scar tissue is so crazy that it’s bound my muscles right up and there are issues with my spine … but you’re right, it’s so important, and I’ll see what I can do. Thanks, Mary Beth!

  2. Laurie says:

    Susan, I have a friend who also experienced severe insomnia after starting aromatase inhibitors. She had to try two different drugs and the last one – worked. She sleeps now.
    So maybe talk to your doc about changing drugs, eh? xo

  3. Laurie says:

    p.s.: it was arimidex, in her case, that finally allowed her to sleep – but of course every body is different.

  4. imstell says:

    This is why I love our blog. In what other world can multiple women across the country answer a friend in Maryland instantaneously in a very relevant and technical way?

  5. spruce hill says:

    Sorry you are so tired! I can’t imagine not being able to sleep. Will they let you take a sleep aide? Just a thought. 🙂

  6. lorri s. says:

    I’ve always been on Femara (same family of drug.) I developed TMJ after chemo and was given cyclobenzapreen (name brand: Flexirol I think.) I take one in the evening. Knock. Out. Drops. I totally sleep through the night with it. It’s really a muscle relaxance, but it totally takes you into dreamland.

  7. You have described the fatigue perfectly Susan. I had it before I had cancer – but my long after babies. I’m now on Arimidex & avoiding plant estrogens like a good patient with invasive estrogen receptor positive cancer.

    The BUT is that I come carrying along the big bag of Fibromyalgia Syndrome which comes with many little surprises including causing the body to avoid – in any way possible – restful, rebuilding, healing sleep whether it’s through waking early, not falling asleep, or just not switching into the “correct” sleep cycles.

    I take ambien as one of a few drugs in my FMS bag of tricks BUT since being on Arimidex although I am sleeping, my fatigue level is like someone who’s taking care of triplets – alone. I’m exhausted if I DO take my ambien and DO sleep but am exhausted and off any kind of sleep schedule if I don’t. It seems like a lose-lose situation

    At this point I’m essentially homebound due to exhaustion and of course the accompanying lack of conditioning from not even being able to do everyday things. I’m too tired to write and often dont think clearly. Taking a shower is an accomplishment, as if we were back to 2+ years ago when I had my first surgery. I tell you all this not to garner sympathy but to explain why I’m not jumping in with suggestions and ideas like my normal self.

    Although Jane Poulson MD -also a cancer patient- wrote a bit about her experience with “cancer fatigue” she was generally ignored – and that was some time ago. My feeling is that this too is a syndrome and fatigue may not be it’s only symptom nor one thing responsible for causing it. But that’s just my gut talking. I’m hoping that at some point there are answers for all of us. And that they come soon for you, to give you lots of fun time with the boys.

  8. Paula says:

    Wow!! I thought it was just me!! This is my first time visiting this site. Am now 46–dx age 42– with a 5yr old boy- thought I was just being a wimp. Had hyster. 5/09 and switched from Tamoxifen to Aromasin. Have all the issues you mentioned here. Watching these people just bounce back and wondering what is wrong with me. At least now I know I am not alone!!! Thought it was my age.

  9. […] Aromasin « Mothers W&#1110t&#1211 growth […]

  10. M J Strack says:

    I am a 4 year BC survivor.I am 55 now.I have been taking Aromasin for almost 4 years. I had all the side effects you have mentioned. My oncologist alllowed me to stop the medication for 4-6 weeks. Then I would start back. My symptoms greatly improved and did not come back to the same areas. I have stopped twice and all seems well now.My first real problem was my heel then my wrist. Both very painful, but now both gone. I have always exercised, I know it’s hard but it really will help. good luck MJ

  11. Jennifer says:

    Yeah, I always wondered what the definition of post-menopausal is for people like us. Since, technically the drugs (chemo, Zoladex, etc) put me into menopause, should I be taking Tamoxifen or an aromatase inhibitor? Apparently it varies from doctor to doctor because mine is keeping me on Tamoxifen.

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