Bottle o Tamoxifen
Comments
-
I read often, but haven't posted because haven't had much to add. Couple of things after having read the last few pages. I'm at 3 weeks on Tamoxifen and no huge SEs yet. Some constipation, which is unusual for me, but that's it. Know it's early. I was very hesitant to take it because, like others, I've never had to be on any meds besides a very occasional antibiotic. I was reassured by by 2nd opinion onc because she could tell me about subgroups that experience the uterine cancer and blood clots, my 2 biggest fears. I don't fit any of the subgroup profiles. No guarantees, but at least reasuring. I was also concerned about mood swings/irritability because I'm a single parent (14, 16, & 20) & can't afford to be volatile. Good there, so far.
Peach fuzz - YIKES! I know it's minor given everything else we're having to deal with, but still, I already have to deal with too much facial hair. Can any of you appreciate this experience I had the other night? I was painting my toe nails, having to lean over a bit, squishing my rock hard saline foobs, trying to keep my glasses at the right spot on my nose (I'm 50 = bifocals) to see my toenails as clearly as possible. Entertainment in between coats of polish? Why, eliminating facial hair, of course! During which I noticed a zit developing & had to go borrow zit stuff from my daughter. Finally, I just had to laugh. Good thing my beauty comes from inside 'cause the outside is having some issues. My toes do look good.
Seriously, my bottom line on tamoxifen is I don't like it, but I'll do whatever I can to get to play with grandchildren down the road.
0 -
and from the woman I told you about who had huge hot flashes with T then found out she hardly metabolized it....
"Please, please, encourge T users to get the metabolizing test done, hot flashes are NOT an indication. These ladies may be taking T for nothing if they are poor metabolizers and getting subtherapeutic levels of endoxifen."
Take care all
C
0 -
Well, I took the first Tamoxifen pill this morning... then went to my therapy appointment and cried about it!! Oh, geez!!
0 -
Raili: The first one really is the hardest. Welcome to the tamoxitrain--we're here for you!!! (((hugs)))
TCK
0 -
Hi Raili,
Tears are all good! The way I am looking at T these days is "I have a chronic disease, which I want to keep in total abeyance. T will help me do that." Just another tool in our tool box to beat this thing - and it isn't forever. Soon, like me, you will be able to say, 8 months down, 4 years 4 months to go ;-)
We have all been there - and it IS tough and scary....
xo
C
0 -
and just an up date of something I wrote several posts ago. I have been corrected (thank you M)
Caroline,
Just checking in to the Tamoxifen thread and saw your posting about the endoxifen test. Actually, it IS commercially available.
Testing can be ordered from NMS labs with a prescription - http://www.nmslab.com/SearchResults.aspx?code=4311B Cost is $396 and requires a blood or serum sample.
0 -
I've been taking TMX now for almost 2 weeks and I am super thirsty. I'm not retaining fluids but I am drinking twice as much as I was before. I'll ask my oncologist about it. I read something about it causing excessive thirst but I don't want to get crazy. So far- peach fuzz and excessive thirst- OH my does the fun ever end??
0 -
So I attacked my peach fuzz with one of those "smooth away" pads -- aka sandpaper last night and it seemed to do the trick. We'll see if it comes back with a vengeance!
I'm in my 6-7week of Tomox, and my SEs are a little more obvious: more hotflashes, and heightened irritability, but that's been it. So far no joint pain, etc. I do stay thirsty, too, and I've tried to stick to something that won't make me retain water, etc. I am still losing a little bit of weight -- which is great, because the 'roids from the chemo had me a bit overweight! Oh, my face is totally breaking out though. I have some prescription stuff from the Onc -- really high price foam stuff -- that seems to help, but this is all over, right beneath the skin bumps, especially on my forehead. I've noticed some heart flutters, and the only reason I notice these is because I take a beta blocker for an pre-existing irregular heartbeat. I've only had it pound a couple times where it made me light headed; I simply sat down and let it run it's course. All these SE's are pesky, but for me, I can do it for 5 years if it means I get another 50 with my kids and grandkids!
0 -
So I attacked my peach fuzz with one of those "smooth away" pads -- aka sandpaper last night and it seemed to do the trick. We'll see if it comes back with a vengeance!
I'm in my 6-7week of Tomox, and my SEs are a little more obvious: more hotflashes, and heightened irritability, but that's been it. So far no joint pain, etc. I do stay thirsty, too, and I've tried to stick to something that won't make me retain water, etc. I am still losing a little bit of weight -- which is great, because the 'roids from the chemo had me a bit overweight! Oh, my face is totally breaking out though. I have some prescription stuff from the Onc -- really high price foam stuff -- that seems to help, but this is all over, right beneath the skin bumps, especially on my forehead. I've noticed some heart flutters, and the only reason I notice these is because I take a beta blocker for an pre-existing irregular heartbeat. I've only had it pound a couple times where it made me light headed; I simply sat down and let it run it's course. All these SE's are pesky, but for me, I can do it for 5 years if it means I get another 50 with my kids and grandkids!
0 -
OH YEAH! I had my first hot flash last night!
. We were watching TV and I was crocheting- all of a sudden it hit. I was drenched. I had to go upstairs and change into the lightest sleeveless top I own. So, peach fuzz, excessive thirst,weight loss and hot flashes. Still the benefits outweigh the S/E so far. I am also more even tempered than I was and a lot less irritable- Well the hot flash made me a little pissed off- good thing I was at home and I could change clothes. 0 -
I'm curious about this peach fuzz thing. None of the "official" stuff I've read about Tamoxifen says that might be a side effect. For those of you experiencing peach fuzz, did you have chemo? Is it related to that?
0 -
I'm another peach fuzz lady and in my case it definitely was NOT tamoxifen as it started before I began to take that. I attribute mine to chemo. I noticed it about a month after I finished chemo as my hair started to grow back. It seemed almost as if my head hair didn't know where to stop. It was on the sides of my cheeks near my ear and down to my jawline. Very fine and downy. Someone else had mentioned shaving it off. I took a small scissors and cut it close to the skin. It hasn't come back to any great extent. I still have some hair there but it's not so noticeable now.
0 -
i didn't have chemo and am more fuzzy- unless I am the same and TMX improved my vision- LOL!
0 -
Hi Girls....I guess I am going to start Femara in about 2 weeks, when this recent prescription of Tamoxifen is finished....I have 3 sample bottles from the Oncologist, plus one more coupon for $10 I think......... I'll try it....I'll see if I have those side effects I read about on the Femara thread. I still have a standing prescription for the Tamoxifen, & I'll go back on it, if taking the Femara is too hard! I'm much older than you gals, & all the Docs think the Femara would work better for me. At least I have a choice. I've been taking Tamoxifen since January 4th...And the only thing that bothers me now, is the having to take immodium AD every night! I haven't had a hot flash, or anything else that you gals talk about....maybe that's because I'm 72? So SOME things ARE good, Ha!
Have any of you taken, or know gals that are on Femara, that are my age? I think if we know what side effects we could have, that makes it easier to understand. At least all my tests so far are clear! I prefer not to do this again!
xoxooxxoxo0 -
OK Ladies I think I may have solved the PEACH FUZZ mystery! I went away with a friend of mine this weekend, when we were getting ready to hit the beach she was putting NAIR hair remover for the face...She has an autoimmune disease...so her hair has been falling out. She is taking BIOTINE supplements and said it causes the peach fuzz on her face so she uses the NAIR to remove it!!! I told her about this thread and she definitely thinks its the Biotine. She had had bouts of hair loss throughout her illness and everytime she is on the Biotine she has to Nair her face. I have since stopped taking it myself. I will be patient about my hair regrowth.
Does that help??? Have those affected been taking Biotine supplements??
0 -
and another comment about T metabolization and hot flashes - once again from my good virtual friend, MTG....
FYI
Posted in: Tests, Treatments & Side Effects + Hormonal Therapy - Before, During and After, Created: Mar 19, 2010 09:06 pm
Here is the study about hot flashes and tamoxifen. There is a modest correlation, but note the study conclusion in bold.
http://www.ncbi.nlm.nih.gov/pubmed/19153830
Women with reduced CYP2D6 activity have low endoxifen concentrations and likely worse long term benefits from tamoxifen. We investigated the association between CYP2D6 genotype and tamoxifen-induced hot flashes in a prospective cohort. We collected hot flash frequency and severity data over 12 months from 297 women initiating tamoxifen. We performed CYP2D6 genotyping using the AmpliChip CYP450 test and correlated inherited genetic polymorphisms in CYP2D6 and tamoxifen-induced hot flashes. Intermediate metabolizers had greater mean hot flash scores after 4 months of tamoxifen therapy (44.3) compared to poor metabolizers (20.6, P = 0.038) or extensive metabolizers (26.9, P = 0.011). At 4 months, we observed a trend toward fewer severe hot flashes in poor metabolizers compared to intermediate plus extensive metabolizers (P = 0.062). CYP2D6 activity may be a modest predictive factor for tamoxifen-induced hot flashes. The presence or absence of hot flashes should not be used to determine tamoxifen's efficacy.
Kristine Ashcraft, GenelexCheers all for a great w/end,
C
0 -
Has anyone heard or experienced hair loss as a SE of tamoxifen? I don't intend to freak anyone out as I know we are all so sensitive to any changes while taking tamoxifen? I have not started taking it yet but I have read that it could be a SE. I need to quit researching on the internet because everyday I find another SE to worry about.
0 -
I've been on T since February. My primary SEs are hot flashes (every morning about 3 a.m.) and joint pain. I have rheumatoid arthritis, fibromyalgia and some neuropathy in my feet from chemo -- I'm 52 but when I wake up every morning I feel like I'm 82. The pain does eventually wear off as the day goes on though. I also have depression and had to stop taking paxil and switched initially to Celexa and now to Effexor XR. Despite what I've read here and on other threads, the Effexor hasn't reduced the hot flashes, but it is doing it's job of lifting my depression, which, I think, is aggravated by Tamoxifen. I worry about women who may be in SSRI antidepressants that interfere with Tamoxifen, my PCP and other providers didn't know about this potential problem and switching or stopping SSRIs is not easy.
Re: PEACH FUZZ -- I have it along my jaw line & the sides of my neck. I finished chemo in January. I do take biotin, so maybe that contributes. If I'm in a certain light, the fuzz is really noticable. I did use Nair for the face, but it burnt my skin. I'm afraid to shave it. Any other suggestions?
Here's the kicker, as I said, I finished chemo in January and been on T since Feb. On Wednesday this week I'm off to the surgeon to schedule a biopsy for 1, maybe 2, lumps in my remaining breast. Nothing showed on mammography, ultrasound or MRI, but they're there for sure. This is similar to my experience last year when the lump I found was undetectable on a mammogram.
Of course, I'm praying these are B9, but if they aren't, I wonder if they were there last year too, and again, not visible on imaging. Perhaps chemo slowed them down, but, they are there nonetheless.
I urge ladies who are just starting not to get overly concerned about Tamoxifen SEs. Not everyone experiences them and worrying about them honestly does no good. (Trying to take my own advice here...)
Lottie
0 -
Lottie, hoping everything will be ok.
0 -
Lottie - hope all is OK as well...
Love from Canada,
C
0 -
Lottie ~ sending up prayers that they are B9 ! Will be thinking of you on Wednesday.
0 -
Lottie - sending good thoughts your way!! So sorry you're having to go through another round of biopsies; best wishes that it turns up NOTHING!!!!!
bcamnb, thanks for posting that abstract, its an interesting study. I'd note, though, that the abstract data only shows that hot flashes don't correlate linearly with CYP2D6 alleles. Those data don't say anything at all about hot flashes correlating with tamox efficacy. The latter is dependent on believing that CYP2D6 alleles determine efficacy and while there are many who believe strongly it does (e.g., as in the first sentence of that abstract), there are also many who don't, and there are data on both sides of the argument. My point isn't that CYP2D6 is or isn't important, just that these data only say something about hot flashes and CYP2D6 alleles, not hot flashes and efficacy.
0 -
CS,
I totally agree with what you have said. My point is that it used to be felt that mega hot flashes meant T was working - ie being well metabolized. My virtual friend with hot flashes+++, as I have mentioned, had to switch from T to an AI because it was discovered on analysis, she was an extremely poor metabolizer, and the stats for extremely poor metabolizers continuing on T are not great.
Cheers,
C
0 -
Do many oncologists do the the test for tamoxifen metabolites? I had the CYP2D6 test (I'm an intermediate metabolizer) but it was ordered not by my current onc but one I had gone to for a second opinion. My current onc is one of the ones who question the usefulness of the CYP2D6 test in showing the efficacy of tamoxifen.
0 -
Caroline - No problem, tx for your clarification. Sometimes I go into scientist mode and get more hacked than I should about what data say vs. what scientists say the data say.
MaryNY - Whether oncs test for Cyp2D6 or not is really variable. It's not standard of care in the US, meaning that there's been no concensus by formal medical bodies about whether its appropriate or useful yet. Nonetheless some (many?) docs do it anyway. Lots of people on this thread have looked into it in varying degrees and we don't all agree on what it means and what its good for. Probably the best recent summary I've read of the controversy is here: http://www.cancernetwork.com/cme/article/10165/1500011. They summarize various studies of cyp2d6 and BC recurrance, some of which show that women with two cyp2d6 wild type alleles (so-called "high" metabolizers) have fewest recurrances, but also some that show that those who had no wild type alleles (so-called poor metabolizers) have the fewest recurrances. Ack! The article points out that there are problems with most of the studies because they weren't originally designed for this analysis (people are going back and looking at old data and tissue samples). There are two key points on all if it: one is that the usefulness of the results depends on what you believe it means (e.g., which studies about Cyp2D6 and recurrances do you believe), the other is, even if you do believe cyp2d6=>efficacy, what are you going to do about the result when you get it? In other words, for a premenopausal woman, if you get the result of being an intermed or low metabolizer are you willing to suppress/remove your ovaries and go on an AI instead? If not, then does the test tell you anything actionable? Some docs put women on a higher dose of tamox as an alternative, but that's not been studied in a systematic way to know if it helps, though logic would suggest yes. I think i've hashed this topic to death too many times here and I think I'm going to swear off it. Do read the article if you're interested.
CS
0 -
You are SO good CS! a feather in your cap
C
0 -
Hi Ladies. I hope you don't mind me jumping in here. I used to be really active on this thread (hi to all my old friends), until it turned out T wasn't working for me and I had to switch to Arimidex. I'm the one who's been corresponding with Caroline.
MaryNY - If I may address your question - the answer is no, many oncs do not yet do the test for tamoxifen metabolites. As far as I can tell, the top 3 reasons seem to be: 1st) they do not know that these tests are commercially available so if their not involved in a study, they dont realize that the test can be ordered. 2nd) if you're pre-menopausal, Tamoxifen is basically the only option so why stir up problems if there is no solution. 3rd) Since Tamoxifen is the standard protocol many docs assume that the "standard" means best and frankly, it's also the safest from a litigation and "oops, sorry it didn't work" point of view.
cs7777 - You are absolutely right. Although CYP2D6 is currently considered the most efficient means of metabolizing tamoxifen into endoxifen, it is by no means the only way that tamoxifen is metabolized . (As I understand it - and I'm not doctor simply a pretty good researcher - that's one of the reasons they're studying increased dosages to see if at higher levels other metabolites kick in.) That seems to be why many oncs don't really worry about doing the CYP2D6 test - it's only testing CYP2D6 alleles not for example CYP2C19 which also metabolize T. With that said, the part of the test results that got me to take the rather drastic step of Lupron shots/ Arimidex is this: the results showed that my blood had "sub-therapeutic levels" of endoxifen,. In other words, no matter what the means of metabolizing inactive Tamoxifen into Endoxifen, my body simply wasn't metabolizing enough of it to get therapeutic benefit, read: Tamoxifen wasn't working for me. And yes, I was getting lots of hot flashes so for a very unscientific sample group of 1, I'm living proof that hot flashes do not correlate to efficacy.
0 -
I went to 2 oncs before deciding which one to use- each gave me a script for TMX- one ordered CYP2D6 the other didn't. In my case it was a 50/50.
0 -
Thanks everyone for your good wishes!!!!
0
