About three weeks ago, I made a pretty radical decision: I decided to take a “drug holiday” from Tamoxifen.
As you may recall, I was taking Tamoxifen because it is the typically-prescribed endocrine (anti-estrogen) therapy for hormone receptor-positive breast cancer in pre-menopausal women (which describes me to a “T”). The net-net is that Tamoxifen has been shown to reduce the chance of the original breast cancer returning and also helps prevent the development of new cancers in the other breast or elsewhere.
Side effects include: bone pain; constipation; coughing; hot flashes; muscle pain; nausea; tiredness; vaginal discharge; weight loss. As was the case with each and every one of my treatments, I had EVERY side effect…EXCEPT the weight loss. In fact, I’ve GAINED a good 8+ lbs. Go figure.
My biggest, most troublesome issues are/were the hot flashes and fatigue (not to mention the blow to my ego of having to let out my pants!). I had four to five BIG, drench-filled, disabling hot flashes almost every hour, day and night. The hot flashes resulted in an inability to think, sleep or function with any remote sense of efficacy. And since beginning Tamoxifen, all day, everyday, I have felt like a sack of potatoes tied to my sofa, yet unable to sleep.
So, basically, I haven’t slept in a year and a half. …and, for the record, I’m a DISASTER without sleep.
After 6 months on the drug, I had a bleary eyed conversation with my Oncologist about whether or not I really needed to take Tamoxifen. As you may recall, I’ve never been one to sit on the sidelines and do as prescribed without asking the tough questions, e.g., When is enough enough?
During an appointment with my doctor when I was asking this very question, he suggested that we use Adjuvant Online to assess whether or not Tamoxifen is right for me.
According to it’s website, the purpose of Adjuvant is to help (cancer) health professionals and patients discuss the risks and benefits of getting additional therapy (adjuvant therapy: usually chemotherapy, hormone therapy, or both) after surgery. These estimates (including the potential for recurrence and mortality) are based on information entered about individual patients and their tumors (for example, patient age, tumor size, nodal involvement, histologic grade, etc.) These estimates are then provided on printed sheets in simple graphical and text formats to be used in consultations.
So, we put in every bit of my data and Adjuvant estimated that the likelihood that Tamoxifen would prevent mortality or relapse within the next five years is 2%. WTF? That’s IT? This means that there is a 98% chance that without taking Tamoxifen, I would not have a recurrence. It was quite stunning.
You might say, “But isn’t 2% worth it?” My answer is no, not really (that’s how debilitated I have felt). As you may recall, because of my horrific reactions to chemotherapy, I stopped my chemotherapy before finishing my prescribed amount.
My doctor said that right now, in order to prevent a recurrence, I need to focus on being as healthy as I can possibly be…and this includes sleeping. He said that prolonged sleep deprivation has the potential to contribute to a cancer recurrence (he didn’t give me a % on that). He then suggested that a “Drug Holiday” might be worth trying to see whether or not it is the Tamoxifen that is the culprit for all of the side effects or whether it is because late effects of chemo are lingering.
After getting a corroborating consulting opinion (ALWAYS a great idea when making a big decision, btw), the HOTY (a/k/a Husband of The Year) and I had a long discussion about whether or not this is the right course of action for me. We both agreed that the holiday is worth the 2% investment.
After agreeing to this holiday, my doctor reassured my decision by saying, “If you have a recurrence, it will NOT be because of this drug holiday.” His reassurance was a Silver Lining to a difficult decision.
This situation further reiterates the need to have a true partnership with your physician(s). Having these discussions about your health is imperative. None of this is easy. Never has been. However, the Silver Lining is that there ARE options!