Bottle o Tamoxifen
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Dear All
Have been on T since November - hot flashes / inability to regulate body temperature are horrible. I'm sure I must appear a complete nut to anyone in the general public... mounding on layers of clothes, shivering, then minutes later peeling everything (well, almost) off, etc etc!
The ONLY way I sleep through the night is before bed to liberally soak a soft washcloth in the coldest water possible. I sleep with it on my forehead/eyes most of the night. Ocassionally I get a chill and take it off, but it tends to stay cold enough all night. Does make for some soggy spots on the pillow but well worth it.
Good luck... I still read the posts now & then. Its really difficult but I'm trying to hang in there. God Bless each of you who struggle with side effects.SIrenator
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Oh No !!
Have I totally got this all wrong ??
I have just read the piece below.
I HAD thought that if you were a poor metaboliser in the CYP2D6 test it meant that tamoxifen wasn’t necessarily effective and that you would, probably be having no or few side effects.
Now, my poor befuddled chemo brain is wondering if I’ve got that all wrong!
If you are a poor metabolizer this seems to say you might have a truckload of side effects. I’ve no idea if it means the drug is or isn’t working ! arrrggghhh
I now, officially declare myself totally lost and am crying out for help << hhheeellpppp>
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There are four phenotypes of CYP2D6: Poor Metabolizer (PM), Intermediate Metabolizer (IM), Extensive (normal) Metabolizer (EM) and Ultrarapid Metabolizer (UM). If a substrate of the enzyme is giving to the patient as a medication, and if the patient has reduced CYP2D6 or CYP2C19 activity, the patient will have elevated drug concentration in their body, and therefore severe side effects may occur
(http://en.wikipedia.org/wiki/AmpliChip_CYP450_Test)
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thank you
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Isla, Nope you don't have it wrong. Be careful of what you read on wikipedia, it can be great but it can also be incomplete, misleading or even wrong. Anything you read there needs to be verified with other sources.
In this case, the problem with the statement that you quote is that the writer assumed (w/o saying it) that a drug itself, as taken, is the active entity, and that once it's metabolized it is inactivated. This is true of some chemo drugs, for example. If one is a poor metabolizer, then a "normal" dose can actually be an overdose for that person (severe side effects, as they say) because too much of it builds up in the system since it's not metabolized and cleared at the "normal" rate.
In the case of tamoxifen, there is substantial evidence to say that the tamoxifen molecule itself has therapeutic activity but also that it's metabolites may have a lot more. So tamoxifen is actually a "pro-drug", while one or more metabolites are the active drug(s). It is still argued over which metabolites do what (and how much the tamox molecule itself does), both in terms of the good effect agst BC & for causing side effects. But the difference here is that one wants the tamox to be metabolized, so the interpretation of the normal, ultrarapid, etc from wikipedia are not appropriate, and which and the extent of side effects one will get hasn't been correlated to any particular metabolite or the native tamox molecule itself.
Hope that helps!
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CS: LOL! I hate those needles!
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Does anyone know what the difference is between Nolvadex and Nolvadex D? I am suposed to be starting Nolvaex D on Monday, but cannot find any info on what the difference is. Thanks
Cheryl
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Hi Cheryl,
I just checked my tablet box. My 20mg pills are Nolvadex D (tamoxifen citrate) and my 10 mg pills just say tamoxifen. (I take 30mg/day.) I think they are one in the same - just different manufacturers.
Cheers,
C
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Ok, I ran upstairs & took my first tamoxifen. Getting it over with. I call it damoxifen, damned if I take it & damned if I don't. Men would not take a testosterone reducing med for cancer. Makes me wonder, too, what Koryn said about reducing estrogen in the already estrogen reduced group.
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I get a Tamoxi-Break starting August 1. I'm having DIEP Flap reconstruction on August 25th, so my surgeons told me to stop the tamox 1st of the month.
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Regarding tamox being estrogen reducing...recall that it acts LIKE estrogen in some of the body and AGST it in others (like ER+ BC cells). It's funny that way. Actually some men with prostate cancer do take lupron, which in men reduces testosterone production. I think it's more like for 6 months not 5 yrs. Apparently it creates menopausal like side effects - bad hotflashes and weight gain and mood swings. It's about the only time men might understand what menopause is like for some!
An AstraZenica document states that Nolvadex is the 20 mg tablet and Nolvadex-D is the 10 mg tablet, but they're both tamoxifen citrate: http://www.astrazenecaindia.com/Products/Nolvadex%20abridged.pdf AZ was the original maker of Nolvadex (brand name tamoxifen).
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bcamnb & cs7777 - thanks for your replies regarding the Nolvadex D. Mine are 20 mg tabs and I just could not find any info out there on that - but I knew you ladies would know
I also remember reading that Tamox acts like estrogen on some parts of the body and against it in others - as cs7777 has posted.
BTW, I can't help but chuckle a little bit thinking of a man going through menopause, even if it's only for 6 months
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Wow - I just read that tamox can induce tumour flare and alopecia. I knew of alot of the potential side effects, but not those two. Wow - just wow. And here my peach fuzz hair is coming in so nicely - lol.
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I didn't think it cuts out estrogen, but stops it from feeding the cancer cells.
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That's definitely what it's supposed to do!
Re lupron-treated men & menopause, there's a touching and funny column by a man in that position here: http://well.blogs.nytimes.com/2009/06/02/my-brief-life-as-a-woman/ titled "My Brief Life as a Woman". Read it and weep. And laugh.
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It must have taken some courage for him to write that column - good for him that he did. My family dr. always says 'they' make women into men and vice versa when dealing with certain cancers. Now I know what he means. I never would've thought men could go through menopause symptoms - that's something else - lol. I hope he did well with his tx though.
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Well I've just marked one year of taking tamoxifen - on the positive side I've managed to lose 86lbs over the year and I hope I will manage to keep it off. I do suffer from back ache which recently has been wrapping around to my ribs but I don't know is this anything to do with tamox. I get the occassional hot flash - nothing too serious. I find I am dead from the waist down (if you get my meaning!!) but again I don't know is this tamox related.
In general I guess I can't complain and here's to year 2 of tamox!!
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yeah, Ainm! you are several months ahead of me. I also have v-low-back pain - unlike any pain/stiffness I have had before. I am convinced for me it is as a result of T. and as for below the waist......yup!
Cheers from across the waters in Canada,
C
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Ainm: Congrats on finishing a year!0 -
As well as the weight loss while on tamox - it's inspiring for us who are about to start!
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I TOO have the backache. IT is bad when I first wake up. Once I shower and get moving it gets better. I take my Tamox at night before bed ~ I swear I wake up in the middle of the night with a backache.
Ainm ~ congrats on 1 year and the weight loss. woo HOO !
Alicia
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Congrats ainm on finishing a year - WOOHOOOOOOOOO!!!!!! And on the amazing weight loss - good for you!!!!!!!
IsThisForReal, the author of that piece is Dana Jennings, and apparently he's come through his prostate cancer treatment quite well. He's been writing about the experience of being a cancer patient and recovering from it quite often for the NYTimes "Well" blog. You can find more of his pieces just by googling his name or going on the nytimes site and searching his name if you're interested.
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Oh, and I just realized, today is the end of 8 months of tamox for me. Only 52 left.......
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Hi All,
CS that hit my funny bone today....I'll have 11 months in on 08-10 so I'm ONLY 49 months away now. Piece of cake. LOL
Just back from vacation and a bout with sun poisoning... my fault. DumbDumb. Wasn't planning on "sunning" and then my daughter hours later asked if I wanted to sit by the water. Oops.
Bonnie
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Glad I can bring a laugh Bonnie! And that you're onlly 49 months from finishing! Sorry to hear of the sun p9isoning. I get that too if I stay out too long, even w/sunscreen. Hope you feel better soon.
At first I chafed at taking this little pill because I hate the idea of being on a medication, any medication. It finally struck me that this is my own little attack dog so I'm embracing it as my ally and friend instead of feeling like a sick-y having to take a pill. Took a while for me to get here but this attitude works better for me.
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CS ~ love your thinking ~ only 52 months left! You go girl ~
Catbird ~ woo HOO 49 to go.
I am only 4 months in...... I have a ways to go ~~
Have a good one all !
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50 months for me ----wahoo! We should all be celebrating each day a little closer to our goal
C
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4 days in for me, 1,821 to go! yeehaaa.
LOL - thanks for all your great words and advice, no problems so far - usual hot flashes which started during chemo are unchanged as yet - maybe they'll get better with time.
Lisa
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Lisa - I was counting days as well but I like the months WAY better ;-))))) Cheers from Canada (just finished writing an email to my husband's sister who is living in Perth at the moment. You have a great country! maybe we will get back for a third visit someday....
C
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I cound down the trips I will take to the pharmacy to pick up my prescription....only 28 to go. I get a two month supply at a time.
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Hi. I had an urge to take a picture of my tamox bottles and use it as my avatar. (I think I got the idea from cs7777?) I just started a new bottle. I've been saving the containers, not sure exactly why but I have some idea of saving them all and then doing some type of sculpture or who knows what when I'm done. I mentioned this on my first day of taking tamox but I'll tell it again: I was so anxious about taking that first pill and then when I swallowed it, I made a fist and said "Kapow!" and then drew it with a magic marker on the label. I've been doing it since.
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59 more months to go! I did this with all my others phases of treatment so I love the idea of doing it with the dreaded pill. So far no side effects other than constipation.
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