Could I be any more special?
I forgot to mention in my last post, I may be even more special than I thought.
On Monday, my oncologist informed me that doctors are now saying that some women with a certain genetic variation (involving CYP2D6....pronounced "sip-two-dee-six"....it has to do with how the body metabolizes) do not receive the full benefits of Tamoxifen. Women with this altered gene may be at higher risk of relapse when they are treated with tamoxifen.
One hint that Tamoxifen is not working is the absence of hot flashes, or not very intense hot flashes. Interesting news, since I'd been on Tamoxifen since April and experienced essentially no side effects. The hot flashes I experienced during chemo were very mild, and after I started taking Tamoxifen they were rare and very very mild. I just figured I was one of the lucky ones who didn't have a bad experience with Tamoxifen.
Since I've had my ovaries removed and am officially post-menopausal, I've experienced some really hot hot flashes. I can see that what I thought were hot flashes before, that was nothing! Perhaps I am one of those special women who don't metabolize Tamoxifen correctly. That would certainly explain the recurrence.
Although this CYP2D6 knowledge has been out there at least since 2005, it is still considered new. Doctors don't routinely test for this before prescribing Tamoxifen. There is a genetic test I can take to see if I do have this altered gene, but it is so new and expensive that my oncologist doubted my insurance would cover it. No matter, I wouldn't waste my money on it. I'm not taking Tamoxifen anymore anyway, and so it would only serve to satisfy my curiosity. Maybe it could rule out the CYP2D6 factor, but then I'd probably obsess over it all and wonder what the real reason is for my recurrence. I don't need more worry! And, I'd still be in the same boat I'm in now, not having much in the way of treatment options except for my new drug.
So I'll focus on the good news about being truly post-menopausal (and no, it's not the hot flashes part, although I am always chilly so it could be nice in the winter): I am now able to take Femara, which is in a higher class of drugs called "aromatase inhibitors", to help prevent recurrence. They don't give you these drugs unless you're through menopause, and they are supposed to be TONS better than Tamoxifen. And after my Tamoxifen experience, hypnotherapy and/or acupuncture would probably yield better results for me than that stupid drug! So I'll be happy with my Femara, and I look forward to a nice warm winter.....
On Monday, my oncologist informed me that doctors are now saying that some women with a certain genetic variation (involving CYP2D6....pronounced "sip-two-dee-six"....it has to do with how the body metabolizes) do not receive the full benefits of Tamoxifen. Women with this altered gene may be at higher risk of relapse when they are treated with tamoxifen.
One hint that Tamoxifen is not working is the absence of hot flashes, or not very intense hot flashes. Interesting news, since I'd been on Tamoxifen since April and experienced essentially no side effects. The hot flashes I experienced during chemo were very mild, and after I started taking Tamoxifen they were rare and very very mild. I just figured I was one of the lucky ones who didn't have a bad experience with Tamoxifen.
Since I've had my ovaries removed and am officially post-menopausal, I've experienced some really hot hot flashes. I can see that what I thought were hot flashes before, that was nothing! Perhaps I am one of those special women who don't metabolize Tamoxifen correctly. That would certainly explain the recurrence.
Although this CYP2D6 knowledge has been out there at least since 2005, it is still considered new. Doctors don't routinely test for this before prescribing Tamoxifen. There is a genetic test I can take to see if I do have this altered gene, but it is so new and expensive that my oncologist doubted my insurance would cover it. No matter, I wouldn't waste my money on it. I'm not taking Tamoxifen anymore anyway, and so it would only serve to satisfy my curiosity. Maybe it could rule out the CYP2D6 factor, but then I'd probably obsess over it all and wonder what the real reason is for my recurrence. I don't need more worry! And, I'd still be in the same boat I'm in now, not having much in the way of treatment options except for my new drug.
So I'll focus on the good news about being truly post-menopausal (and no, it's not the hot flashes part, although I am always chilly so it could be nice in the winter): I am now able to take Femara, which is in a higher class of drugs called "aromatase inhibitors", to help prevent recurrence. They don't give you these drugs unless you're through menopause, and they are supposed to be TONS better than Tamoxifen. And after my Tamoxifen experience, hypnotherapy and/or acupuncture would probably yield better results for me than that stupid drug! So I'll be happy with my Femara, and I look forward to a nice warm winter.....
posted by KT @ 9:49 PM
8 Comments:
At 10/13/07, 11:48 PM,
lahdeedah said…
Well, here's what is special, so special about you, KT:
1) You're a fabulous writer. I read all your October posts and plan to read more when I can.
2) We have a lot in common other than breast cancer: We both are from the South (I grew up in Atlanta), we both love the Indigo Girls and AC/DC (an odd mix, for sure!), we both read Anne Tyler, and we both love Shrek. I actually love Ocho, who is an animator for Dreamworks, but I still love Shrek :)
3) You're smart and you do your research. Like you, too, I'm on Tamoxifen. I have no hot flashes, or only minimal ones. My chemo threw me into abrupt menopause, and I haven't had a period for a year now. But my oncologist is keeping me on Tamoxifen because if the oophs crank up again, Tamoxifen won't help. Also like you, i had AC and a double mastectomy. I'm happy you're going on Femara. The stats for Tamoxifen + an aromtase inhibitor are encouraging.
4) I like how direct you are with your kids. I am direct with mine, even though I sometimes carefully edit my comments. My kids knew (know) everything. I'm a big believer in the truth, even with little kids. Actually, the hardest part for me has been recently...post treatment.
5) You have a little edge and little attitude, and I vibrate to that! I'm not big on religion, but I'm a big friend of God and prayer. I'll pray for your continued sense of humor and enough grace to get through the day.
Warmly,
Jill
At 10/14/07, 2:19 PM,
Jenster said…
Hey KT! I've been meaning to leave you a comment for the last week, but keep forgetting. I'm going to play the chemobrain card.
I had major intense hot flashes while going through chemo. They were better after chemo and while on Tamoxifen, but I still had them. Long story short - the chemo did not kill my ovaries like all the doctors said it would. So I eventually had to have a total hysterectomy this past July. I'm still on Tamoxifen, but am looking forward to changing after the first of the year.
Okay. After reading Jill's comments I think we all come from the same club or something. Seriously. Though I did A/C and Taxotere. I had a left mastectomy in May of 2005 and then a right prophylactic mast and DIEP reconstruction last December.
So much more I could say, but I have actual work I'm supposed to be doing on my computer. Blech. That's no fun!
I'm so glad I've met you two girls along with Sherry. What a great community we have. :o)
At 10/14/07, 8:57 PM,
Hedgie said…
Katie,
Thanks for visiting my site. You probably found me through Jill (isn't she great? she lives up the street). We are sharing the same boat on this merry ol' ride.
My kids are 5 and soon-to-be 8. They know everything and have come through this quite well. So says their therapist! My stage IIa was diagnosed in May '06 after I found the tumor. Bilateral mastectomy although only one side was affected; it was showing up as normal breast tissue and we couldn't take any chances. A/C, Taxol and Taxotere, radiation (2 sites due to micromets in two nodes).
Went to Commonweal in June of this year. They have a another program out near you called Smith Farm (I think, name may be escaping me). Check it out, really great retreat.
As Jill says, you're writing is tops. I learned a few things, too, which means you get a link on Hedgie's Haunts.
Libby (aka Hedgie)
At 10/15/07, 12:30 AM,
KT said…
Jill, Jenster, and Hedgie, thank you so much for your encouraging comments. I can't tell you how much I've enjoyed visiting your sites....Sherry's too....and have learned lots. You are the kind of friends a cancer survivor needs: Upbeat and fun, always looking for the bright side in order to make the best of our crazy situations. No "Debbie Downers" for us, thank you! ;-)
It is wild, how similar our histories are. There is another blogger out there, Jayne, same age and history. I need to add links to you all.
Katie
At 10/15/07, 1:03 PM,
Hedgie said…
Katie,
Comcast is refusing my email, thinks everything is spam. Must be a server thing, I've been getting this error for several days. I'll see if DH can figure it out, he's the computer guru.
Later,
Hedgie
At 10/15/07, 8:00 PM,
Jayne said…
Katie,
How nice it is to have found all of you through these blogs!
I wasn't a very good candidate for Tamoxifen because I was Er + Pr -. That negative PR component can make tamox. go heywire. That's why I had my ovaries removed - so I could take Arimidex instead.
(BTW I've been reading oodles about genetic testing lately. There is SO much going on in that field; it's incredible.)
At 10/16/07, 4:22 PM,
Jenster said…
Hey KT - I've given you an award. Come see it on my blog. :o)
At 10/17/07, 9:51 AM,
Crooked Eyebrow said…
I agree. You are a wonderful writer!
I have learned so much, just from reading your blog.
Post a Comment
<< Home