Wednesday, December 12, 2012


Who might Dr. Julie Gralow recommend as "good candidates" for a ten year regiment of tamoxifen?  You'll just have to listen for yourself.  Listen carefully.  Listen closely.  There are plenty of qualifiers in this chat.

For the metastatic patients, the very first part of our chat is about a study that showed some promise in early trials for first line treatment of metastatic disease using a combination therapy.  Again, it's important to note this was a very early trial but it could be a significant building block in developing more effective treatments for metastatic disease.

Before you listen to what Dr. Gralow thinks about all of this from a clinical standpoint, I'd like to share an email I received regarding the ten years on tamoxifen.  There are things that are obvious to most and then, there are those things that, unless they directly impact YOU..... well, they might not even cross your mind.  These are mighty powerful words. Discussion worthy.  Thought provoking.  Heart wrenching.  And why things should not be splashed across the headlines.

You will hear me tell Dr. Gralow that I began getting lots of email and watched the stories hit the news feeds..... These words, written to me, were on my mind.  Julie Gralow's words, spoken for all of us, are featured below.

"In all the ATLAS study coverage I read, reporters only mentioned the results—apparent extra protection against a breast cancer recurrence for women who take tamoxifen for 10 years instead of five years, the current standard of care—as a great thing. Toxic side effects are mentioned as asides, since doctors tend to think tamoxifen’s benefits far outweigh its risks. (My father is a doctor, and when I asked why his colleagues dismiss patient complaints about side effects, which can range from uncomfortable to disabling, he said, “It’s our job to get you from point A to point B.” Fair enough, I guess, but just because women rarely die from the endometrial cancer tamoxifen use can cause doesn’t mean they didn’t have MORE CANCER.)

That about 40 percent of women in the study who were supposed to take tamoxifen for 10 years stopped taking it early, according to the NYT’s story on the study (though my takeaway from the research was that there was about 20 percent noncompliance—not sure which one is correct), suggests that doctors (the ones quoted in newspapers) and patients (the ones who don’t want to die from breast cancer) are not seeing eye to eye on this one, even though their end goals are the same.

That’s not surprising. But I am shocked that I’ve yet to see any mention of one key factor that would discourage younger women from continuing on the drug, especially since study recommendations focus on premenopausal women: Taking tamoxifen for a decade essentially makes childbirth impossible. Women are not supposed to get pregnant on the drug, because it can cause birth defects.

I went on tamoxifen at 26, which puts me on the younger end of young. Many women can still have kids through their early 40s, but being unable to have kids before 36 would curtail my options in a drastic way. Most other “young” women diagnosed with breast cancer are in their 30s, pushing them over the 40 boundary after a 10-year course of tamoxifen. All this while, in real terms, the decrease in mortality from the extra five years worked out to about 2.8 percent. Being alive and living are two different things, and I’m willing to bet that many young women who want to be mothers, be it for the first time or again, will risk the 2.8 percent. I know I would."

That matters.  "Being alive and living are two different things...."   Indeed, they are.  Tamoxifen at 26?  Breast cancer at 26 (or possibly 25)??  It spurs me to work harder, to push for faster results, to be a fierce advocate for change.  This status quo and the same old story just ain't working for me anymore.  My MOM began a long course of tamoxifen in 1988. My MOM is having a PET scan today to follow up on her second diagnosis in 2007.  What has really changed?

And now.... the wisdom and calm of Julie Gralow, bringing the rhetoric down from a fever pitch to a dull roar.

(BREAKING NEWS ....  a little addition to this post because it's relevant.  Last night, I was pointed to by a few people on twitter.  This blog was mentioned, my name is in the article along with some of what I wrote about the hype surrounding this ten year plan.  I'm in an article that is on the government website in the National Cancer Institute bulletin???!?  Last paragraph.  And yes, I'm stunned.  And yes, I've finally been rendered speechless so it's a good thing this post was written before I saw that.  And yes, I'm glad that the article is about the precise thing I had lined up to talk about today.  Maybe there's something to that 12/12/12 thing?)

Back to our regularly scheduled program.... The Interview......

The You Tube link:!

No comments:

Post a Comment

Something to add? Do Share!