Bottle o Tamoxifen
Comments
-
bcamnb: That's why I'm so bummed about being an intermediate metabolizer. I'd hate to take tamoxifen for years and it really not be doing any good for me
. I've already been taking it for 6 months--I guess I'll see what they say after I have my levels checked on the 40mg dose. I had ooph/hyster in Dec, so I guess I could ask to be switched to an AI. Thoughts anyone?TCK
0 -
Hello ladies,
I'm on my 3rd month of Tamoxifen now and just had a very sudden onset of intense Right hand bone pain. Did I mention intense! I can't even lift a coffee cup. I haven't been typing or texting more than usual but something is doing it.
I try to tell myself that bone pain means my bones are getting stronger but I'm about ready to throw that theory out the window. I'm popping ibuprofens like their tic-tacs. I guess I'll wait it out a day and see if it subsides. I did Have a weekend of rich foods and alcohol so maybe this is a by-product and I just need to get the purines out of my system.
If I've got no relief by tomorrow I guess I'll call the onc and see what she has to say about it. I am supposed to stop it one week before my exchange surgery (no date yet...hoping for early May) so maybe I"ll just stop it a little early.
Have a great day!
Kat0 -
TCK,
Have you done any research on Melatonin? (a naturally occuring chemical that governs circadia rhythms) What I've read about it is that it's can actually enhance the effects of Tamoxifen. Maybe if you had a catalyst to your tamox, you could be an extensive metabolizer...with sleeping well through the night as a bonus!
Just a thought...
Kat0 -
Soooo...I had a minor freak-out this morning.
I realized, after getting into my car and heading to work, that I forgot to take my Tamoxifen last night. I normally take it right before getting into bed, and I have been so exhausted...I remember setting my juice down on the bed-side table, and looking at the bottle...and then sleep.
*sigh* I've got to come up with a better routine. Last month, I looked at the bottle and couldn't remember if I had taken it that night or not...and was concerned about taking 2 in the same day.
I hate to get one of those daily pill thingees, they make me feel old, but I think I'm headed in that direction.
*pffft*
Alaina
0 -
Alaina: I hate the daily pill thingees, but without one I'd never remember. I bought the smallest one I could find and the tablets I take (Vit D, Ca, Vit B6 and Tamoxifen) just barely fit.
Hannahbearsmom: What do you mean by "after I have my levels checked." Is it possible for them to check for the amount of Tamoxifen metabolite in the blood?
0 -
hannahbearsmom, bcamnb, and all, regarding the CYP2D6 test and tamox metabolism: I read up some more on the tests and am frustrated to find that the state of the research is sufficiently muddy that there is no scientific agreement that the standard measurements of CYP2D6 alleles is a good predictor of tamox efficacy or even its metaobolism. I know that sounds crazy, but to quote one review: "Steady-state concentrations of tamoxifen & its metabolites [CS: which would be dependent on CYP2D6 enzyme action] have long been recognized to vary widely among patients, yet these variable concentrations have not been associated with clinical outcomes, and dose-setting studies have not shown that higher doses of tamoxifen improve the response [CS: they used only 10 and 20 mg/day doses]." They point out that of 10 studies of the association of variant CYP2D6 alleles and recurrence risk, 4 report no association and 6 report association. So, no concensus. Sigh. It's important that even so-called "poor" metabolizers based on the CYP2D6 test DO metabolize tamoxifen, just not as well. E.g., a recent study of Japanese women demonstrated that so-called "poor" metabolizers had half the concentration of metabolites in their blood as "strong" metabolizers, & the "intermed" metab had 3/4 the conc as "strong" metabs. Hannabearsmom, this is presumably what's behind your clinical study: double the dose so you can get to higher metabolite concentrations too, even if you metabolize tamox less than "strongly."
So why the mixed results based on the CYP2D6 tests? First, what it is: the CYP2D6 test is not measuring actual endoxifen & 40-hydroxytamoxifen metabolites in the blood, rather it's measuring which gene variants you have for the enzyme that metabolizes tamox. And, the standard tests measure only a particular set of variants of the genes, and if you have some other variants (that also metabolize well, but aren't being measured) you may be labeled a "poor" or "intermediate" metabolizer yet still have perfectly strong metabolism of tamoxifen. There are some issues with study design & interpretation as well, but this will get too long if I include that, so I'll stop. The bottom line is that because of the muddiness, there are no concensus guidelines for use of CYP2D6 genotype testing for deciding whether women should take tamox or not (or whether they should take a higher dose). My own onc doesn't like to do the CYP2D6 test and now I understand better why, but part of me still wants to know! I haven't yet figured out why they don't just regularly measure blood endoxifen instead of CYP2D6 genes, but I'll let you know if I do.
One related thing I learned is that there are common drugs for other conditions that are known CYP2D6 inhibitors, and recent studies now show they definitely interfere with tamoxifen metabolism and, importantly, its efficacy. There seems to be concensus that "when therapeutically similar agents are available, it is prudent to prescribe the meds that inhibit CYP2D6 relatively little." Importantly, the CYP2D6 inhibitors include common antidepressants including Paxil, Prozac, and Zoloft. (e.g., see http://www.drugpress.net/?r=p/1252864763#comment). Hopefully everyone here who's also taking antidepressants will have docs who've caught this important interaction, but I mention this in case some have missed it, and you want to bring it to the attention of your psych's and onc's.
Ok, enough science for the day (sorry so long...I share for those interested in this level of detail). Hope everyone's doing well on the tamoxitrain today!!
CS
0 -
cs7777: Thank you for staing into those muddy waters and making some sense of it.
0 -
Sure Mary. I'm a biomedical researcher by training and my curiosity gets the best of me when I'm confused or just plain ignorant about a biomed topic - just have to go read and see if I can make sense of it. Despite my background though, do know that I'm sharing just to provide general info for anyone interested. I'm not a BC genetics expert and shouldn't be taken for one!
0 -
CS, thanks again for the great info.
My onc feels the test isn't helpful and now I understand why.0 -
cs7777....you were right....I still have the aching in my joints and bones but it is more tolerable....I'm not gaining nor losing weight...the mood swings however... I just went back to work at the beginning of this month and my tolerance for people's BS is at an all time low. If I don't have a counseling memo in my personnel file within the next six months it will be a miracle. This is my second month on tamoxifen and I'm hoping the moods will improve as time goes on also. I've been on SSRIs in the past and don't like how they make me feel...kind of like there is a thick piece of plexiglass between me and everyone else...a sense of being removed from everyone. It will also kill whatever sex drive I have left. For now, I'll stick with the tamoxifen.....for future...counseling memo may result in SSRI, lol.
0 -
It seems like the bottom line is that, if I test as a "high" metabolizer based on the CYP2D6 test then I can believe it and take tamox knowing I'll metabolize it as much as anyone, but if I test as intermed or low metabolizer then the result is inconclusive and therefore how to act on it is fuzzy. For premenopausal women there's no pharmaceutical alternative to tamox, and therefore docs feel like denying women tamox because of an inconclusive result seems bad, even if there's no proof it will work either. For postmenopausal women, at least there's the option of AI's as an alternative so getting the result of intermed or low metabolizer of tamox could push a patient in that direction. I think this addresses the Q of someone else here (should you look into AIs after your ooph), sorry, I can't recall who wrote it. A good but quite technical discussion of all this is at http://jco.ascopubs.org/cgi/reprint/28/8/1273.
One interesting thing I found is a first short clinical trial using endoxifen itself as the drug, which would overcome issues with CYP2D6 since it's the active metabolite already. The results looked positive in terms of tolerance and safety. Hopefully longer trials will now be done, although they'll be too late for us already on the drug.
0 -
Hi TKC - I am also an IM as you might remember and I am taking 30mg.
What I have decided is to hang with T for close to two years and then get my endoxifen level checked (I know it is pricey but again, it will be worth it for me). If I am producing enough, then likely keep on for the remainder of the 5 years. If not, get an onc consult, and ask to be switched to an AI. T is SO MUCH better for my bones, which already tend to osteopenia (my spine). Had a follow up app't with the Breast Cancer Supportive Care doc yesterday. She encouraged lots of Vit D (she herself takes 4000), 30 min of brisk walking/6 days a week and upper body weights - in preparation for a switch if I need one.
Cheers,
C
0 -
cs7777: do you know much about raloxifene? As I was waking up this morning, there was a report about it on NPR, mentioning that it had fewer SEs than tamoxifen. NCI have an article on it - Long-term Follow-up Confirms Breast Cancer Risk Reduction with Raloxifene0
-
Alaina: Guess what I bought at Walmart this weekend? One of those pill thingies
. I decided that I was tired of every morning getting out all the pill bottles and getting out all the meds and then repeating in the evening. Soooo, I went ahead and got one. I'm glad I did cause now I have to take my tamox twice a day. I think it'll help me remember to take it again at night(sometimes I forget my Vit E and calcium at night). We'll see...MaryNY: After I have been on the doubled dose of tamox for 4 months they will recheck the endoxifen level in my blood. Apparently, it takes 4 months for the blood levels to become constant.
cs7777: Once again, very informative--I thought you had to have some sort of medical/scientific background!
KatRNagain92: Other than what I have read on here, I really don't know too much about melatonin. I'll have to read up on it a bit more though, I guess. Thanks for the suggestion.
bcamnb: I guess I will discuss with my med onc in July what her longterm plans are for me as far as tamox or an AI, especially in light of my being an intermediate metabolizer. We didn't talk about it at my last visit which is the only visit I've had with her after my hyster/ooph.
Sleep well all and keep cool, TCK
0 -
cs7777 thanks for all the insight! You always inform all of us!
I haven't resorted to a pill container yet. I move mine from by the alarm clock (morning) to the other side of my vanity (night) so I know right away if I took it or not. My vitamins and calcium and Vit C are all in the kitchen and I pack them in my lunch when I go to work each day. Since it is in my lunch bag, I can't miss them. I think it helps since my husband has to have meds at 7 and 7 so we do meds together! He has 2 pill containers though, a day and a night one. Then there is the insulin and all that drama that goes with that on top of it.
0 -
Well, I just remembered that you don't click on a link in the middle of a long post! Ha! I have lost ANOTHER one!
ANYway, you girls are so good with the information! cs7777....Yes, I read the same article about metabolizing Tamoxifen, & that the Cyp2d2 (?) test isn't as "useful" as thought. There IS another thread on here, posting the same thing!
But taking the Tamoxifen for 2 years, and THEN having the test, makes a lot of sense also. We just want to KNOW that it is doing us some good! I also read that the side effects or lack of, doesn't mean we metabolize the Tamoxifen well.
Okay....and Melissa, glad you made the move okay! And your new Buddies sound like a lot of fun! They keep us "young!" I am a little worried about SV....She emailed the other day...And she was in terrible shape....I wrote back for her to go to Emergency....I haven't heard back. I'll let you know!
Guess that's all.....gotta take my pill...
xoxoxoxo Jeannette0 -
I need the pill thingie but haven't gotten one yet. It's silly, but it seems like one more step into old lady land that I'm just not ready to take.
I try to take all my pills when I get up in the morning, it's the only way I can remember to take them. I have to take glucosamine/chondroitin 3 times a day. I'm lucky if I remember to take it it twice. 
When I saw my onc last friday they weighed me. To my surprise, I had lost 8 pounds since I last saw her without even trying. I was really happy about it and ran home to try on my favorite jeans. I haven't been able to wear them since last summer. I had a hard time zipping them up! (???) They should fit now, what is going on? Is the Tamox redistributing all my remaining fat to my tummy? :O
There was an interesting article on the accuracy of HER2 testing in the NY Times yesterday. Did you guys read it? Be warned, it's kind of disheartening.
http://www.nytimes.com/2010/04/20/health/research/20cancer.html?pagewanted=1
Other than that, have a nice day Tamoxibabes!
0 -
MaryNY, no I don't know much about raloxifene, sorry. I've done so much reading on tamoxifen since I'm on it and have a vested interest. I wonder if there's another thread on BCO about raloxifene, and/or some info pages on BCO? Good luck figuring out your questions on it.
bcamnb, I like your plan, and that you're really on top of all this. I'm just so convinced that we have to be our own strong advocates through all these decisions, and you're so doing that for yourself!! Yay!!
I'll second Sparrow's comment about the NYTimes article. Very interesting - do take a look if you haven't -- although, yes, disheartening too. I know Linda Griffith, the "example patient" they used in the article, and it was really wierd to see her show up on the front page of the paper!
0 -
I was compaining to my med onc today about not being able to drop much weight.He said most ladies gain upt to 20lbs the first year on Tamox.He also said the chemo also slows our metabolisms right down.
0 -
I was compaining to my med onc today about not being able to drop much weight.He said most ladies gain upt to 20lbs the first year on Tamox.He also said the chemo also slows our metabolisms right down.
0 -
Pink glove dance for my Pink pals! click below to see. I hope it pump you up as much as it did me!< http://www.youtube.com/watch?v=OEdVfyt-mLw>
Hope you all are feeling stonger , I pray for all of you & Hope all the Appt & treatments are going well. Thinking of you often, sorry I haven't posted much, Now that Iam back to work & come home exhausted! I try to read & keep up with all of you daily, just havn't had the energy to post! But love reading about your life & great info you have for me !You "T" Girls Rock.
I see my Oncocgist tomorrow to get lab & make sure infection is out of my system, Then if it is we talk treatments, I been on a Mini Vac from Tamoxifen since last visit due to Infection In March ,when I had to have my 5th surgery & I lost My Tissue Expander, She & I wanted to see if the infection or T was cause all the Side Effect, head aches, hot flashes & then chills & I had no energy, had Fatigue, Anemia & muscle joint pain-Leg pains-was sent to Hospital to for doppler study,But Thankfully it was not Blood clot!. I am finally feeling better & Now I probally be starting back on T soon. Ugh. Hopefully It was the Infection more than the "t" I guess I 'll find out soon!
{{hugs]] Gina
0 -
Gina: Good to hear from you again! Glad to know you are up and about and able to go to work! I know what you mean about being exhausted at the end of the day though. I come home and put on my pjs!
Wow! The NY Times article sure is interesting. Thanks for sharing. I'm sure it gives us all something to think about.
0 -
Thanks for your support. I really appreciate all of you all, you all Keep me going by reading the great post & wonderful Info. Love reading your stories, I just wish we we all live in the same city!We could have some great get togethers!
Thanks again! {{hugs to all }}Wasn't sure if this pasted before "Pink Glove Dance" check this out it awesome viedo,Hope it put a smile on your face!Wanted to share with you all! Gina
Please click! http://www.youtube.com/watch?v=OEdVfyt-mLw>
0 -
YEAH Gina - great to hear from you. Just do a Susie drive by once in awhile so we know you are OK.
Had my very first pelvic and endo vaginal ultrasound today. After 7 months of T, I am at the high end of normal for increase in the endometrium and have a few endometrial cysts. The tech said nothing to worry about but there are definitely things happening down there (as this is my first, I don't know what the lining was like 6 months ago!) Anyway, see my doc next month, so will know better then.
Here I am at our cabin in BC playing cards aided by my love bug ;-) At three months, he had gained 7 lbs and grew 6 "
We are off tomorrow for a trip to Orlando and Ft Lauderdale, then a Panama Canal cruise to Vancouver. I likely won't have much of a chance to chat here until late May.
VERY BEST wishes to you all in the meantime. keep well
xo
C
0 -
Caroline ~ he is a cutie ! Enjoy your trip it sounds wonderful. We are going on a cruise in 2 weeks to Celebrate ~ done with CHEMO and surgeries. Have a great time.
0 -
Thanks, Alicia ;-) And have a great time yourself. After the year we have had, we DO need to celebrate!
C
0 -
Got my Chillow and tried it out last night. Had a much better night's sleep than usual. I only woke twice. I usually wake about four times. Not sure if this is due to the chillow or not. Yesterday evening I drank less water than usual so I'm now going to drink more water during the day and less in the evening so at least I won't have the full bladder waking me up.
0 -
Mary - woo-hoo for the good night's sleep!! Hopefully it continues!
Remembering to take the T...I have to say my DH is the only thing that keeps me on track. He's super-anal about taking his vitamins every morning, and when I started taking them again last fall he sweetly got them all out for me, putting the pills in a little pill cup. So now he gets my tamox bottle out too, although I told him not to handle it. It's hard to forget when it's staring at me on the kitchen counter after breakfast.
Hope everyone has a good day!
0 -
Like Caroline I had my first gyn appointment last tuesday, no scans or us just an internal exam - she said that everything was fine, for someone on tamox!! - couldn't give me any explanation for the back ache that I get intermittently. She said she doesn't expect to have to see me again unless I develop any problems.
Well I'll just have to wait and see if that back ache gets more acute again and try and figure out what triggers it.
0 -
Had my gyno exam yesterday. Did the vaginal ultrasound. All looks good. I do have a small 1.2 cm simple cyst on my left ovary, perfectly normal he said. Right ovary is good. And he said my uterus is beautiful ~ something about the measurement of the lining putting me at about a .5 percent risk of uterus cancer. So that made me happy !
Hope you tamoxibabes are having a good week~
Alicia
0
