About-to-Start-Hormones Group

orange1

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

Anonymous

Unbelievable Peeps and Fairy,  I just don't get it - why don't the drs. check hormone levels !

I'm going later this month for a urine test to check my estrogen level - no other choice but to dole out the $.

Take Care Everyone! Hugs!!

elisabeth

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 

Makratz

My onc also wouldn't test, she said they are too unreliable.  Were I am premeno, there's only one option anyway.

Springtime

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...

fairy49

springtime! every onc is different much as plastic surgeons, if you go to the breast reconstruction thread, its amazing on how different all the recommendations are, for instance I had my exchange last Tuesday PS wants me in a surgical bra 24/7 for 3 weeks, some of the other gals were told to keep pressure off!, and it goes on and on......so I guess we just move on! I did own saliva tests for hormones, the interesting thing is, per my saliva tests I am almost post meno, but according to the one blood test my onc did in Jan I am pre-meno so who the heck knows LOL!! aaaahhhh!!

Lorraine ox

Springtime

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...

AllieM22

I had the test and was told I also am an "extreme" metabolizer of tamoxifen--which is good since I am pre-menopause so that's all I can take. Started taking it two weeks ago--and so far (hate to say this lest I jinx myself)--no SE's. So I am crossing my fingers. Also have read here sometimes they take a few months to hit.

I was wondering too why they don't test for hormone levels other than to see if someone is pre- or post-menopausal to see who still has high ER/PR amounts. I wonder who they recommend (or decide to) patients for ovary removal... 

peeps1111

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

Springtime

Allie,

I had heard where I go that they recommend ovary removal when there's a family history of ovarian.. Other than that, it seems up to the patient. I asked, and they were pretty sure if one had BC, that insurance would pay for ovary removal. 

Spring.

PSK07

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!

fairy49

Springtime, can you share with me your levels for Estridol, FSH and LH? I am trying to figure out from my results where I am as I had them done my self with salvia. Peeps! I take DIM also and then about 20 other supplements, seems like I add something new every week!

Lorraine

Springtime

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.

fairy49

Springtime, thanks! mine are LH 13.2, FSH 34.6 and Estradiol 8, I also did Estrone which was 21 and Estriol which was 9, Cortisol which was 13 burden (whatever that means!) DHEA 4, Testosterone 14 and Progesterone 50........I will find out next week what this all means! I am not sure from the LH, FSH and Estradiol if I am pre or post meno, any ideas? Sounds like you hit meno full on! Do you have symptoms?

Lorraine

Springtime

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...

fairy49

Thanks Spring! My onc said I was pre-meno but based on what I can see from my other tests I look to be more "in" meno!! I haven't had hot flashes at all, I get cold flashes??? I haven't heard of anyone having cold flashes!!

Lorraine

AccidentalTourist

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. 

bluegems

spring,

I would go with the oopherectomy with a family history. My dear friend who was 9 years out of bc, will start chemo, rads after her total hysterectomy last week. Cancer (stage 2, grade 3) due to tamoxifen. I firmly believe, that it should be an option to have the partial/total hysterectomy for postmeno women. I realize the chance of endometrial cancer is slight, but watching her go through this will be heart rending. She's angry that they didn't recommend removal when they found polyps (noncancerous) two years ago.

Fortunately, I had a partial hyster 2 years ago - before my bc. But as soon as I go menopausal, these ovaries are coming out.

Take care,

blue

mumito

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?

NancyD

Pam, I read you post and realized I FORGOT TO TAKE MY MEDS THIS MORNING. Damn, I'm at work now and won't be home until 6 pm. I should really bring a couple of my Arimidex to my office so I can make up for days like today.

Springtime

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?

NancyD

Spring...achy joints, and what seems like hayfever—sneezing and a clear, runny discharge from my sinuses. So I've been taking Zyrtec along with my Arim. I must have had something on my mind when I got up because I've never forgotten to take them before. They were right there, all laid out with a nice big glass of water. And I am in the habit of taking meds in the morning for years. First it was Synthroid, then it was Prilosec.

Springtime

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

PSK07

NancyD - I now have a bottle with 1/2 doses of Effexor in my desk. At least if I forget the night before, I'll have something to help quell the SEs.

One thing did occur as a result of missing the dose - I had one hot flash yesterday and at least 2 this morning. First ones I've had.  Tamoxifen obviously sticks in the body longer than Effexor!

Since I was a teen "cold flashes" have been part of my monthly repetoire.  They'd trailed off over the years - were particularly horrible during my late teens. Hot flashes followed by cold flashes accompanied by cramps that would kill. Since starting Tamoxifen, I have to admit that I've had more and wondered if they were an SE.  For me, they feel almost like a tingling in my upper body and I can feel my temp drop. I thought I was just weird!

NancyD

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. 

mzmiller99

I caught the tail end of an NPR piece on bc.  They were saying that a study was done that showed taking Fozomax after AIs decreased the chance of reccurence by a large margin...?  Did anyone else hear of this?

It seems they noticed women being treated for osteoporosis had a significantly lower rate of recurrence or mets, so they did a trial on it.  If someone knows better what I'm talking aout, please chime in.

I did hear that the drugs for osteo weren't approved for cancer treatment, but so many women taking AIs had bone problems that it isn't that hard to prescribe them.

It sounds like more good news to me!!

Susan

Springtime

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

Oh, gosh, you are all reminding me that I forgot to take my meds earlier!!  I'd like to get the tamoxifen metabolism test, too; costs about $300 on average.  If my oncologist won't order, I think I can get my PCP to order it.  I'll spend the $300 if my insurance won't cover, but oddly enough, I actually bought cancer insurance (thinking I'd never need it!!!!) a few years ago and they might pay for it.  I'm taking the tamox anyway because if it does work, I'd rather take the chance that I can decrease my recurrence risk in the meantime.  My onc has me take 1/2 in the AM and 1/2 in the PM, which seems to keep the symptoms down, but mine haven't been bad anyway (no worse and maybe better than regular menopause).

Traveler, I'm sorry to hear about your mom.  Been there, done that.  It's really really hard.  You know, I have found that simple old Tylenol PM helps me sleep.  So does Benadryl.  So, you don't necessarily need ambien.  So does tryptophan (sp?).  All over the counter.

This has nothing to do with anything, but it's good news about something besides BC:  I just got a photo accepted into a juried art show, my first for 2009.  Art has been on the back burner for a while, so it's nice to get a little jump start.

MZ, I can't wear heels for LONG, but I can wear them as long as I don't have to walk far or stand around endlessly.  I can do the average party in them or go out to eat and look glamorous!  LOL  It's all the ballet training I had.  Gave me strong feet and high arches.

mzmiller99

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!!

KAK

Susan, your daughter was lucky you were so supportive of her. 

I'm at a seminar this weekend in NH for rehab clinicians (PT's and OT's) on how to help        people with cancer, with the big focus on BC and lymphedema.  Learning some good things, met another PT who's a survivor, and the upshot may be that my boss at work and I are going to try to start a multi-disciplinary homecare team to help post-op patients, etc. and so forth.  We meet again tomorrow.  Feels good to be learning how to help other people like us.  One funny thing was that today, our instructor spent the afternoon focussed solely on BC, and was talking about different types and stages, etc., and then going through all the treatment options and all the doctor visits you have to make and all the decisions you have to contend with, and all my colleagues were groaning and shaking their heads in sympathy, and it was exhausting just to sit there and listen to it.  And I thought, "yeah, and it's even more fun actually experiencing it."  It was  a backwards kind of validation for what we have all had to go through with this disease, and a good reminder to pat ourselves on the back for dealing with all the crazyness with any sanity intact.