About-to-Start-Hormones Group

If insurance won't pay, the tamoxifen metabolizer test is only a few hundred dollars in case you want to pay for it yourself.

Hi All.  I empathize with your concerns Peeps and Lorraine.  I went off Arimidex and will now start taking Tamox, but I am so happy to not be on Arimidex.  I don't want to take Tamox, but damned if you do and damned if you don't.  I did want to tell you what my med onc said about both of these tests.  He is an incredible doctor and will do anything to help his patients.  He also completely admits to the side effects of these drugs - as you know many doctors deny the SEs.  Anyway - he said many of the tests are not accurate at all and some have false readings.  He also said it is almost impossible to check estrogen levels because there are so many different types and estrogen is produced in different organs in the body.  He said that estrogen levels also could be very different "depending on the day of the week."  I, too, asked to have my estrogen level, but finally went with his decision because he is so good to me and such an excellent doctor.

I know this doesn't help much, but I thought I'd pass on my experience.  E 

Fairy, how stoooopid! I will get results of my tamox. metabolism and all those other "menopause" tests today. My Onc did them. I wonder what that is all about? Why they didn't want to do it?

I am hoping all these blood test results will piont a clear direction - either Tamoxafen or an AI. I had period regularly prior to chemo, none since then, am 50. Sort of boarderline case I suppose...

Spring...

Hi All,

I just got test results back that show the Estradial and FSH/LH are consistent with post menopause. Also I am an "extreme metabolizer" of Tamoxifen. (which sounds scarey?)

I got to talk to the ONC end of March to find out what they'll recommend. I am assuming an AI? Anybody have any insight into this?

Spring...

Lorraine:

I am also taking some supplements, DIM and cat's claw along with a few others.  I did talk to a pharmacology breast cancer research expert today and decided that I would start taking it but I am going to start with 5 mgs. in the morning and 5 at night and see what happens.  he wasn't too keen on the metabolizing test.  I am all about quality of life so if the side effects are too much, I will be off it. 

Peeps

So after 2.5 months of faithfully taking the tamoxifen and effexor every night....I forgot last night. "Woke up" this morning (if you want to call it that) in a total and complete fog. The girls looked at me and asked if I was really going to work. That bad.

I felt like I could sleep for another 10 hours. Since I'm taking only 75mg of Effexor, and I have been thinking of upping it for the AD benefits, I took 1/2 of a pill this morning in hopes of staving off some of the worst SEs of missing a dose.

Funnily enough, while I've had extreme night sweats, daytime hot flashes haven't been an issue. Til this morning.  Whew! 

Peeps - isn't DIM kind of like tamoxifen? Can you take both?  What does cat's claw do?

Kathi - love the shoes. Doesn't matter what my weight or general health is - I can always find a pair of shoes that fit!

Lorraine, sure thing. Here is what my test results said with the hand written notes from the ONC office:

Estradial & FSH/LH consistent with post menopausal level: 

1. LH (mIU/mL): 22.2
2. FSH, serum (mIU/mL): 57.6
3. Estradiol: <15 (L) 

It also says I am an "extreme metabolizer" of Tamoxifen (Cytochrome P450-2D6 genotyping.

I also looked those "levels" up on the web to validate this was consistent with post menopause. And they were. I can't believe I went through chemo and full blown menopause from chemo at the same time. I was regular with my periods before chemo. I expected I would be "perimenopausal" but I guess chemo knocked it right the heck out of me! lol.

Spring.

Lorraine,

Let me know what you find out. I remember them saying as something goes high, something else goes low. I will try to look it up tomorrow! Yours are similar to mine. 

I was hot flashing all the time through chemo, and at some point I realize "vaginal dryness" was upon me!   I have been trying that "Replens" stuff. But hey, if you have to go through Menopause, you may as well do it through chemo. There was so much going on I had no idea what end was up. And now, a few months later, I am Post Menopausal??? Wooooo. May as well "Git 'er done" I say.

Spring...

Hi Lorraine,  I have had cold flashes for some weeks after starting Tamoxifen.  My husband complained that the house was boiling hot but I just could not get worm enough.  They did turn into hot flashes later although in my case this is fairly bearable. 

I have been on tamox for 11/2 months.Can't sleep more than 4 hours without a hotflash.  Take the tab in the morning.  Anyone find it makes a diff what time of day it is taken?

Blue, so the tamox gave her the uterine cancer? ugh. that is like a double whammy. makes me mad just hearing about it.

I am thinking of keeping the ovaries for a couple of years. My ONC stated that in the next 2 years research data will start pouring in about lupron shots vs. ooph. -- she said right now they don't have the data to say if on is better...

Nancy, do you have any symptoms on Arimidex? You take in the AM?

Mum, I thought I remember some taking the Tamox at bedtime?

I am on Synthroid... hmmm. seems a pattern here. lol.

I was on Synthroid for about five-six years. It was simply to try and reduce the goiter that had developed after 1/2 my thyroid was removed 30 years ago. It was the lowest dosage they make. It didn't help, so when my endochronologist left medicine, and I ran the presecription out, I stopped taking it. No problems so far.

The Prilosec was to counteract some acid reflux I had had for several months. It also took care of having to worry about eating certain foods, like raw onions. While I was taking it, I never had to pick through my salads and take out the culprits. I took it for  a couple of years. Just before I was dx with bc, I stopped taking it and things were fine (except for still having to watch for certain foods that set off heartburn). But when I started chemo EVERYTHING semed to give me heartburn, so I went back on it until I ended chemo in August.

Just about then, I started the Arimidex. I eased off the Prilosec. The about a month into the Arimidex, I started having the hayfever-like symptoms, so first Claritin was tried, then Zyrtec.

Since so many of those meds were best taken in the morning, I've been in the habit of doing it now for years. This is only the second time I've forgotten ANY morning med.

Hah! The sad thing is, I can't remember what was so-o-o important when I got up that I totally forgot to take them. 

Yes, Susan, there was quite a buzz on this. If you take Zometa (2 infusions a year) there were significantly less bone mets. Something about what these drugs do in the bone blocks cancer I think it is!

I will ask about this if I get on the AI. I will find out at the end of the month. 

Spring...

KAK - Woo Hoo for your picture being accepted!

Aha!  I was a ballet mom!!  My younger daughter was a natural with a size 11 foot!  OMG!!  The price of pointe shoes was stunning, and she went through them in a matter of weeks, unless they were performance shoes, which, I'm sure you know, would last almost one frickin' performance!!. 

 She went to the Boston Conservatory and danced with a small modern company in Albany.

 While she was home, I made most of her solo costumes and many company costumes.  One cool thing - for several years she and I worked in wardrobe for the NYCB when they did their summer residency in Saratoga NY.  It was a dream come true!

And when I come back to earth, I'm going to be able to do a cartwheel, remember a dance routine, and dance like my daughter!!