Bottle o Tamoxifen
Comments
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CS and BCinColorado, thanks so much for the posts. I really appreciate it. I downloaded that PDF, CS and it looks great. I will order the Anti-Cancer book too. And thanks for clarifying the dosing situation. I was getting nervous that my doctor prescribed one 20mg dose a day. I'll check out what you wrote re Vitamin D. I plan on reading all the pages but it's at 249 now and moving fast! Glad to hear the constipation went away after 3 months. Today marks one week and so far the constipation/ upset stomach is my only SE. Not sure if most SEs occur after more time..
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MaryNY:
No, I don't have any testing result to know how I metabolize Tamoxifen, I was just curious why I'm still having doozy hot flashes when I've temporarily discontinued it for my exchange surgery. My last period was Nov 3, 2009, first chemo Nov 5, 2009 and I started having hot flashes really quickly after starting chemo. Maybe my chemo-pause triggered menopause? I will be restarting my Tamoxifen and other vitamin supplements next week....I did chemo to kick bc, so I'm not going to wimp out on Tamoxifen, but I sure do hope I can relieve some of the side effects either through the timing of my dosages or additional supplements.
Which reminds me to say a big THANKS to you, CS for your very helpful and informative posts...I learn so much here!
Colorado: the morning of my exchange, my PS looked at me & said "so what are we up to now?" meaning saline ccs in my expander.....I had absolutely no idea, just drew a total blank...my husband piped in with the correct answer, bless him!
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Hi Psalm121, In the same place I found info on the pharmacokinetics of tamoxifen, it mentioned the elimination half-life of tamoxifen to be 5-7 days, and of one of its major metabolites to be about 14 days. That means that once you stop taking the drug, 7 days later the conc of tamoxifen in your blood will be about half what it was at the time of your last dose, and 14 days later it will be down to 25% of that amt, etc etc. The metabolite is eliminated even more slowly, since it has the longer half-life of 14 days. Since you've only been off the drug for about a week if I recall, you still have tamoxifen & metabolites in your system and so it's reasonable you're still responding to it w/hot flashes. That's assuming they are associated with the tamoxifen at all, and not still with your chemopause, which could be the case. I ho idea how you sort that out!
Speaking of hotflashes, my DH has told me that one of the best ways to cool down the body (referring to sports, but perhaps also for hotflashes) is to put a coldpack on the wrists, esp the left wrist. He says it's because the veins are v close to the surface there so its easy to cool the blood there, and that blood is circulating back into the core, so if you cool there it helps cool the whole body quickly. The palms are supposed to be similar. I can't attest to it for hotflashes but it does feel really good if I overheat with physical activity. Anyway, just a thought for trying to cool down - let us know if anyone tries it and it seems better/worse than other methods.
For the gal who gets up at night to get coldpacks (sorry, can't recall who!!), have you thought of getting a really small cooler like a 6-pack cooler for next to your bed and putting several packs in it as you climb into bed? Then you wouldn't have to get up at night, just reach over and grab one! (Yes, I'm really lazy!!)
Have a good weekend everyone!
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CS: Thanks for the input on the left wrist/palm! I'll have to try that if I get up in the night for a big train ride on the TamoxOTrain!
Psalm121: I talked to my breast nurse navigator yesterday and asked about the test for metabolizing Tamox and she said that the protocol was for women who were considered post-menapausal, which I am not yet. I guess it hasn't been proven yet in those who aren't. She still thought I might want to discuss with onco when I see him next, which will be July.
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I started tamox in Jan 2009. Became constipated right away! I immediately added prunes to my day, and that seemed to be all I needed. However, I still feel a strange full sensation a lot of the day, and after I eat I get full right away. I am now showing some uterine thickening so am scheduled for a endo biopsy in a few weeks. I am 53 so already had been on the way into menopause when this all started so no bleeding. Hot flashes!! that is another story! I was always a cold person till this, now I am known to strip while cooking -- cooking seems to bring them on, funny thing........my husband will suggest grilling, and I will throw something at him. the insomnia also played some funny tricks, I purchased a lot of shoes in the middle of the night online. both of those have seemed to subside a bit in the last month though, don't know why. the bloating is what is bugging me (gained a couple pounds too). but I am also scheduled for another full mammo in May so I am stickin' with it until I get through these next few tests!
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So ladies, I have been reading your posts for a long time and it is finely my time....today I take my first T..feel like a T virgin....wish me luck...any last minute advice? What to eat, what not to eat, vitamins, things to avoid or watch out for.
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Hey there, Michele:
I picked up my bottle and set it back down 3 times back in Feb when I was starting Tamoxifen! I'm still feeling like a Tamoxifen-newbie myself, but I sure do wish you well and no side-effects!
What is your dosage instructions? My onc told me he wanted me to have 20 mg daily, but gave my first Rx in 10 mg pills so that I could decide if I wanted to take one in a.m. and second in p.m. or the 20mg just once at a.m. or p.m. I will now be trying to take 20mg in the a.m., because the other two options have been keeping me up with hot flashes all night!
Thanks again, CS and bc! I have been off of Tamoxifen since April 1st and plan on re-starting tomorrow a.m.......Also, I guess I'm considered pre-menopausal still, as I had a period in Nov 09
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Michele ~ no advice here. I take mine in the morning (20 mgs) with my coffee. So far my hot flashes are about the same as they were before and I have less of an appetite. THAT side effect works for ME. I have a lump like bruise on my forearm now I am freaking out thinking "could this be a blood clot? or is it a bruise". I will keep an eye on it ! grrrrr.... every lump, bump and pain makes the mind race now.
Good day to all you Tamoxibabes !
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Are there any Ladies out there that wake up in the middle of the night-- say around 4-5 times to have to urinate? This happens every night like clock work!! Not sure if this is from good ol Tamoxifen or maybe caused from Chemo?
I have only been on Tamoxifen for about 3 weeks - HOWEVER have also been taking Prednisone for a few weeks due to a cough that I developed from RADS. Between the two-- some days I feel like I really need an ATTITUDE adjustment! LOL
About 10 years ago I had an Laparoscopy due to Endometriosis. I haven't had a period since Chemo Pause 7/09 -- But strangely enough the past couple of days I have been getting a little pressure on my rt. side down below my stomach that radiates around my back with a little dull ache that I use to get when I had Endometriosis. Could this be something to do with taking tamoxifen? Maybe I should schedule an appointment with a GYN to get checked out....
Loretta
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I am taking 20mg. But the info sheet I got with the meds said not to take it with coffee, so i am taking it with my supper since it is at the same time every day...
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I take my pills as 10mg dose in the am and one in the pm....7 and 7. Most have food with or shortly after eating and I usually take with water.
Psalm121: My BS told me they decide you are considered post-men after 1 year w/o one. I was about 9 months and had one right after mx in Jan but none since.
As far as getting up in the night, I don't know if it is the Tamox or getting older!
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Hi Loretta,
I sure don't know a thing about endometriosis, but I sometimes have pressure like you described with a kidney/bladder infection.....plus you are having more trips to bathroom in the middle of the night.....sooooo, yes, please do check with your doctor. Either way, they need to know and you shouldn't have to worry and suffer! Hope you feel better!
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Uh Oh....don't take it with coffee????? I've swallow mine every day since November with my morning coffee. Do you know why? If it has to do with stomach upset, that hasn't been a problem for me, but if it has anything to do with effectiveness then I guess I better start digging into the research end of things.
All these little details......who knew......
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Hoping everyone had a great weekend! We did! Now, back to the grind...arghhhhhh lol
Have a great week!
♥ Susie
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Echo I"m with you... mine gets swallowed with my coffee every am !?!?
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Well I only got up once last night which was a surprise! But my bones hurt today. I feel like I am walking like an old lady who needs hip replacement surgery today. Don't know if I just didn't rest enough this weekend since my daughter was with us visiting or if it is Tamox since it says it can cause bone pain. Anyone else have this happen to them?
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I was just about to take my T with coffee. Hmmm...
BC, Yes, yes, yes. I saw my onc friday and she suggested I try an "arthritis formula" OTC pain reliever. I'm walking like an old lady today too.
My onc said it's most likely from Tamox.I don't want to scare any newbies but I'm wondering if 5 years of Tamox can cause joint damage. I can't find anything about that on the net, but it worries me a little.
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Sparrow: I started to have joint pain (shoulders, hands) just after I began rads. I was three weeks PFC and hadn't yet started Tamoxifen. The neurooncologist I saw last week figures it's post-chemo arthritis. He said it can appear weeks or even a few months after chemo. If I had started Tamoxifen, I would be blaming that. Not sure whether you or others complaining of joint pain had chemo, but if so that's another possible cause.
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Mary, I'm sorry you're dealing with that!
That's interesting, I hadn't heard that chemo can cause arthritis.I didn't do chemo, just surgery and rads. I've never had any joint pain before starting Tamox.
I took Ibuprofen this morning and I feel a little better now.
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Hi Sparrow! Just found out something interesting.....My dear friend had BC about 10 years ago. A mastectomy, followed with just Tamoxifen for 5 years. She is doing great, & just had a bone density test, & her bones are great, the Doctor said! She had heard, & I have also, that Tamoxifen will "protect" your bones.....She didn't have the aches & pains during the time she took it. But then I don't have hot flashes either. She is even older than I....Ha!
So I guess 5 years down the road, we can all look back on this, & thank God that we are still Okay! My first mammogram on the "corrected" side is coming up soon...
Oh well... That's how we found the cancer in the first place....so anything we can do to protect ourselves, is good for me! I was thinking....do you guys with joint pain take Glucosamine every day? And a good Multi-vitamin? Just a thought.....I think it's helping me.....along with Calcium & Vitamin D3.
SOMETIMES I wake up several times during the night also! But then most nights I just get up once! Still taking Melatonin....maybe it helps! Have a gun day Tamoxibuddies! xoxoxoxo
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Hi ladies! just wanted to pop in and say I have been on Tamox for 1 year today! 365 down, 1460 left to go lol. I had hot flashes and woke up with night sweats quite a bit when I started and I did gain some weight, but after about a month, I didn't have any side effects anymore. I take my pill at night when I go to bed, they are on my night stand so that I never forget them. I am 34 and I still have my period, but I would say it comes every 6 weeks, instead of once a month. I am scheduled for my 1st endovaginal ultrasound next week to make sure everything looks good, but so far, I am happy with the Tamoxifen. I have not had the tamox metabolizer test, and I've read that you can't really go by side effects, I have seen high metabolizers have no SE and poor metabolizer have lots. Have a great day Tamoxibabes.
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Jilly: Congrats on finsishing your first year! So the hot flashes and night sweats only lasted a month?
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Hi Tamoxifriends! Well, my study nurse called me today to give me the results of my tamoxifen metabolism test and I'm an intermediate metabolizer---I'm pretty bummed about it but I am glad that I was able to enter the study and find out my result. I have to double my dose now--20 mg twice a day instead of once. I just hope that after I increase the dosage that I don't see an increase in SE's
. I guess only time will tell. Did anyone else have to increase their dose and if so how did it affect you?TCK
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Hey hannahbearsmom or anyone else who's commented about level of metabolization in the last few days, can you define what you mean? I assume you each had the CYP2D6 test. Correct? So do you mean that you were found to have 2 fully functional CYP2D6 alleles, or one fully functional allele, or none, and that the docs are labeling these as "high", "intermediate" or "low" metabolizers, respectively? Sorry if this is too technical...I'm just trying to figure out what they're measuring so I can understand what y'all are saying!0
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Also, if you're up for it, I'll encourage everyone to go to this thread and vote for Linda, who was pregnant when she was diagnosed with bc and now has a year old infant. We are voting for her to have a mommy-makeover! She seems to be in a neck-and-neck race and voting ends April 22nd!
http://community.breastcancer.org/forum/72/topic/751050?page=2#post_1803529
Go to the top of the thread for the link...and then you can vote there. (The video that's posted is a tearjerker...watch out!)
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cs7777: I was tested for CYP2D6 also. Results showed that I'm also an intermediate metabolizer, I think it said that I'm heterezygous for the gene. I thought there was one gene involved and that I had the dominant and recessive alleles for it, but from something I read elsewhere it seems as though there may be more than one gene involved.
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cs7777: The study nurse didn't go into detail about my alleles other than to say that it was determined that I am an intermediate metabolizer based on my CYP2D6 result. As far as the study I am enrolled in, the literature says that there is a 5% chance that a person taking tamoxifen is a poor metabolizer, a 50% chance of being intermediate and 45% chance extensive metabolizer.Those who fall into the poor and intermediate metabolizer categories are instructed to increase their dose to 20mg twice a day. Sorry I couldn't give you more info. I'll have to try to contact the nurse and see if she can give me more info.
TCK
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jillyg ~ thanks for your post....I guess there's hope that these T-induced hot flashes might end?? (I'm having a hot flash as I type...arrgghhhh)
I started on T in Feb 2010. I take it at night just before bed as I'd read some posts on this thread from others who found it was better to take it a night. I get some hot flashes during the day, but not too many and they're bearable. My sleep sucks though. I'm usually good until about 2:30 or 3:00 am, then the flashes/nightsweats start. I find it takes a lot of time to get back to sleep afterwards, then I'm awake again in a hour or so to repeat the process. I have sleeping pills but don't like taking pills...I may take one every couple of weeks to get a better sleep.
Does anyone have advice on sleeping better with T?? thanks
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Jilly: Wow....too much math to keep track of how many left! Congrats to you on finishing 1 year!
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bcincolorado -
Protocol be damned! The CYP2D6 test determines if the T is metabolized into endoxifen - the active agent we need. If you don't metabolize it, it is pretty much useless. Pre or post menopausal - I'd think most people would like to know if a drug is being effective if they are taking it every day for five years. To me - scary if it is not effective.... That's why I arranged for the test myself.
Take care
C
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