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Bottle o Tamoxifen

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Comments

  • CatbirdC
    CatbirdC Member Posts: 235
    edited February 2010

    Hi Everybody,

    SPARROW ~~  You might get your wish if I read a post correctly that Atlanta was supposed to get snow this afternoon ????????  Nothing would surprise me with this crazy weather.

    We got another inch but it doesn't matter.  LOL  At least we can drive and do "most" normal things now.  School is another matter.  I feel so sorry for the kids having to make up all these snow days.

    I agree that at times you have to take your treatment in your own hands since you are the only one that knows just how you feel.  There is always that exception to the rule and there is always the side effect that YOU have that thus far no one else has reported.

    BonnieCool  still hoping.  LOL

  • Sparrow
    Sparrow Member Posts: 80
    edited February 2010

    Gosh darn it, it was supposed to snow last night and it didn't.  We'll see about this afternoon, Catbird, but I'm starting to lose hope.  When the Weather Channel page says snow it's usually just rain.

    I was looking forward to a long, romantic walk in the snow with DH and the dogs.  Maybe we'll have some snow by tomorrow, I have my fingers crossed!  :) 

  • Harley44
    Harley44 Member Posts: 2,126
    edited February 2010

    Sparrow,

    Don't worry...  This storm is coming from the SOUTH... from Texas, and they got a couple feet of SNOW... I hear it's supposed to head over to your direction soon... today, and later tonight, it will head into the Carolinas...

    I don't want the snow...

    Chevyboy,

    If you feel more comfortable on Tamoxifen, then just insist that your dr. let you keep taking it. 

    Hugs to all... have a great weekend!
    Harley

  • CatbirdC
    CatbirdC Member Posts: 235
    edited February 2010

    Hi All,

    Sparrow...hope you get the snow IF you want it.  LOL  Can't say I blame you Harley for NOT wanting it.  I guess it might be fun to play in once in a great while.  I guess.  LOL  Right now is not a good time to think about that one.

    I was visiting in Greensboro, NC once when on the day we were to leave an ice/sleet/halfsnow type thingie occured.  We asked a gas station when the roads would be plowed.  He laughed and said:  "The good Lord put it here and the good Lord will take it away."

    I've visited many times in Myrtle,  Harley,  when my brother (now deceased) had a place he rented down there and golfed a lot.  I thought their weather was pretty great over all.

    If I had my druthers I'd go bye bye from here about 2 months a year like many of my friends do, but DH isn't a bit interested.  Maybe he'll get tired of shoveling and snow blowing yet.  LOL

    BonnieCool the closest I'm getting to these shades is when my glasses turn in the sun.

  • kcl65
    kcl65 Member Posts: 741
    edited February 2010

    Good Morning Tamoxifriends

    Been really busy getting ready for a visit from my MIL.  She is arriving tomorrow from Australia and will be with us for two weeks before she heads home to England.  She is amazing, she is 86 and has traveled from England to South Africa, then to Australia/Tasmania, and now to Cali.

    Bonnie ~ I will continue to send warm thoughts to you!  My sis lives in NY and so I have been hearing things about the weather on the East Coast.. Yikes! Come spring come! LOL Cool

    Harley ~ I had a headache for a week.  It is gone now, but I think it may have been hormonal. Anyone still have a bit of a fuzzy brain? I find I have to write everything down or I will forget it... not like me.

    Sparrow ~ It seems crazy...  but here's wishing for snow so you get your romantic walk! Smile

    Susie ~ Cute picture of the kitties in the sink! I'm glad your party went well and that your team won! Wink

    Jeanette ~ I always feel awkward sticking my nose in a board that is not geared toward me, but I am happy that StillVerticle is doing better.  Good for her eating those chocs and not sharing... we all need that every now and again.

    Caroline ~ I'll be thinking of you when you make your trek! Have a safe trip!!

    Well gotta get back to my cleaning... have a wonderful day everyone!!

    Kelly :)

    Edited to correct spelling...jeez! LOL!

  • Sparrow
    Sparrow Member Posts: 80
    edited February 2010

    Harley, Catbird and kcl65, thank you!  :)  I just looked out the window and it's actually snowing!!!  :D  

  • Harley44
    Harley44 Member Posts: 2,126
    edited February 2010

    Bonnie

    Sorry about your brother...   Myrtle Beach is nice, and I'm glad that we live here now... but it still gets too cold for me.

    Kelly,

    I have gotten those hormone headaches too.  This time, I think it's this weird weather pattern we've been having... lots of storms...rain, but now they are calling for SNOW tonight...  UGH... 

    Susie, I took an Excedrin last night, and forgot... it has caffeine in it and it kept me UP ALL NIGHT!  Also, I didn't eat something, and now my tummy is upset...

    Sparrow

    Glad you are getting the snow you want.  Do me a favor and keep it... don't send it up here!! LOL

    Harley

  • ReginaR
    ReginaR Member Posts: 97
    edited February 2010

    Hello. I hope you don't mind me joining your Group. I am 2 week post -op today from Rt Mastectomy  & immediate TE & nodes removed. I still have my 2 darn Drain tubes. I had to cancel appt today because still draining one has 60cc other it right at 25cc , PS won't take out til 25 less, reschelude for Mon Feb 15 & hope he take them out so I can get my 1st filler.

     I had my 1st Onocogist appt yesterday & she gave me Rx for Tamoxifen ( 5 years) my husband went out & got it fill & I am jsut staring at the bottle, Not knowing much about it, I know I don't like the side effects.

     I want to ask  please for advice. I thought I might start tonight. I thought if  I take it every night, & sleep I won't experience as many side effect( Silly -huh)

    How are you all feeling after taking it &  what would be the best time to take it!

    Thank you so much

    Hugs

    Gina Robinson

  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited February 2010

    Hello Gina!!!!!  I'm glad you found us!  Sorry you are having so many problems!   But these women can help you with everything!  It's all such a long process!  We just want it to be over!   I started Tamoxifen almost 1 1/2 months ago, & no side effects...I was ALSO afraid to take it...But I'm more afraid of Femara or Arimidex!!!!  Can you just try it for awhile?   I take mine early in the mornings, with a nice smoothie, & a baby aspirin....I also eat a couple croutons with hummus, & I haven't noticed ANYTHING different!   Good luck, we'll be here....just come knockin'! xoxoxoo Jeannette  

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    Hi Gina,

    Welcome to -  as Susie calls us - the Tamoxi-beauties ;-)  We are a great virtual bunch and are as individual as you can imagine. We have women here from Canada, USA, Ireland, Australia.... and we are of assorted ages and diagnoses, as you will note.

    Now to your question

    All of us, and I think I don't lie when I say ALL, have stared at that bottle/or in my case, box. I waited until the 1st of the month to take my first one (October 2009) - you might want to wait 'til Valentine's Day (for me, I wanted to be able to remember the exact day - it might not matter to you). The plan is for all of us to take T by itself for five years (or for some post menopausal women, do a switch to an aromatase inhibitor in a few years - total five years). But there have some who have begun and then dropped out - always an option. Some of us are in love with our onc's, others have fired their docs and replaced them. Some, like me, have been discharged from an onc and are being followed by our family doc, or in my case, by the Breast Cancer Supportive Care Foundation here in Calgary. 

     Unlike Jeanette, I take my T in the evening, either with supper or later WITH food (a snack). I have been tested and only partially metabolize T, so I am more particular about what I eat - NO phytoestrogen food/drink - like hummus (there is a huge long list you can google ). As well, I think I am taking the highest dosage of anyone - 30 mg. Most everybody here stays away from soy and flax for sure. I also limit my alcohol to one drink a week (because of the ethanol, a daily drink increases the risk of recurrence of BC by 10%). I also have stepped up (no pun intended) Wink my walking - try to do 30 min brisk walking 6 days a week - said to reduce the recurrence rate by 50%. 

    I have been v lucky so far with SEs. Only minimal night sweats, achy back occasionally, slight dry eyes occasionally....

    Keep well, Gina - and welcome again. We are a friendly group!

    C

  • MBCR
    MBCR Member Posts: 51
    edited February 2010

    Due to snow storm  in the Northeast, my follow up appointment  from D&C was cancelled & rescheduled for next week. In the meantime, I had  my quarterly check uo w/ ONCO & mammo wh/ were all "normal".  "YEAH"

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    YAHOO MBCR - great news!

    C

  • Irishmom
    Irishmom Member Posts: 11
    edited February 2010

    Hi Ladies - I am turning to you for advice on weaning off Paxil.  I have been advised by the oncologist that Paxil will work against the benefits of the Tamoxifen and that I either switch to Effexor or I consider weaning off.  I am scheduled to meet with my regular doctor on Tuesday to get her advice on coming off of Paxil all together.  I googled Paxil withdrawals and I can't believe all of the sites that popped up and the horrible things that have been said about Paxil and how terrible the withdrawals will be.  I have been on Paxil for about 4 years and I know I have at least 2 weeks before radiation starts and then 6 weeks of radiation, so I am hoping that I can be free of PAxil by the end of radiaiton.  Can anyone offer any advice of this subject and the pros and cons of quitting paxil.  Many thanks to everyone.  Thanks, Kathy   

  • kcl65
    kcl65 Member Posts: 741
    edited February 2010

    GINA... Welcome!! I can't add anymore other than to say that like Caroline I take my T at night with a glass of milk.

    MBCR... Excellent news... YAY!!!! Laughing

    JEANETTE ~ LOL! that certainly gives a new meaning to "muffin top"! Hahahahaha!

    Sleep well tonight everyone!!

    Hugs,

    Kelly :)

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    Hello All,

    I am copyiny this from the CYP2D6 test site, as there was a question about the controversy of the efficacy of testing to see if you metabolized T. I think this helps explain things a lot:

    "hlya - Please print this study Goetz was talking about to and take it to your physician - http://jama.ama-assn.org/cgi/content/abstract/302/13/1429 The study concluded that there was a very large difference in recurrence, but not a difference in survival. Personally, I think preventing recurrence is reason enough to think the test is worthwhile.

    Other important studies confirming the importance of CYP2D6 include:

    The impact of cytochrome P450 2D6 metabolism in women receiving adjuvant tamoxifen. Goetz MP, Knox SK, Suman VJ, et al. Breast Cancer Res Treat 101:113-21, 2007

    Conclusion: CYP2D6 metabolism, as measured by genetic variation and enzyme inhibition, is an independent predictor of breast cancer outcome in postmenopausal women receiving tamoxifen for early breast cancer. Determination of CYP2D6 genotype may be of value in selecting adjuvant hormonal therapy and it appears CYP2D6 inhibitors should be avoided in tamoxifen-treated women.

    Relationship between CYP2D6 and estrogen receptor alpha polymorphisms on tamoxifen metabolism in adjuvant breast cancer treatment. Grabinski et. al., Proceedings of The American Society of Clinical Oncology 2006.

    Conclusion: Tamoxifen (TAM) and its metabolites display large inter-individual variation with profound implications for breast cancer outcomes. Tamoxifen is hydroxylated to the potent metabolites, 4-hydroxytamoxifen (4-OH TAM) and endoxifen, by various cytochrome P450 (CYP450) genes including CYP2C9 and CYP2D6. The SULT1A1 gene is involved in the conjugation of 4-OH TAM. Tamoxifen's binding site is the estrogen receptor (ER). Genotype and ethnicity are significantly associated with levels of TAM and 4-OH TAM and may explain clinical variation in response to TAM treatment.

    Pharmacogenetics of tamoxifen biotransformation is associated with clinical outcomes of efficacy and hot flashes. Goetz et al. J Clin Oncol 2005 Dec 20; 23(36):9312-8.

    Conclusion: In tamoxifen-treated patients, women with the CYP2D6 *4/*4 genotype tend to have a higher risk of disease relapse and a lower incidence of hot flashes, which is consistent with our previous observation that CYP2D6 is responsible for the metabolic activation of tamoxifen to endoxifen.

    Clinical implications of CYP2D6 genotypes predictive of tamoxifen pharmacokinetics in metastatic breast cancer. Hyeong-Seok Lim, Han Ju Lee, Keun Seok Lee, Eun Sook Lee, In-Jin Jang, Jungsil Ro, J Clin Oncol 2007 Sept. 1; 25(25):3837-45.

    Conclusion: CYP2D6*10/*10 is associated with lower steady-state plasma concentrations of active tamoxifen metabolites, which could possibly influence the clinical outcome by tamoxifen in Asian breast cancer patients.

    CYP2D6 genotype, antidepressant use, and tamoxifen metabolism during adjuvant breast cancer treatment. Jin Y et al. J Natl Cancer Inst 2005 Jan 5; 97(1):30-9.

    Conclusion: Interactions between CYP2D6 polymorphisms and co administered antidepressants and other drugs that are CYP2D6 inhibitors may be associated with altered tamoxifen activity.

    Werner Schroth, Lydia Antoniadou, Peter Fritz, Matthias Schwab, Thomas Muerdter, Ulrich M. Zanger,Wolfgang Simon, Michel Eichelbaum, and Hiltrud Braucholfgang Simon, Michel Eichelbaum, and Hiltrud Brauch. J. Clin Oncol 2007 Nov.20; 25 (33):5187-93.

    Conclusion: Because genetically determined, impaired tamoxifen metabolism results in worse treatment outcomes, genotyping for CYP2D6 alleles *4, *5, *10, and *41 can identify patients who will have little benefit from adjuvant tamoxifen therapy. In addition to functional CYP2D6 alleles, the CYP2C19 *17 variant identifies patients likely to benefit from tamoxifen

    Kristine Ashcraft, Genelex"

    Hope you find this helpful - those of you who were wondering about the CYP2D6 test.

    C 

  • Grakenmom
    Grakenmom Member Posts: 137
    edited February 2010

    Caroline - many thanks for the CYP test info. I have an appt with my onc next week & intend to study up & ask questions.

    Irishmom - sorry I have no experience with Paxil, I was on Wellbutrin until I weaned myself off last spring. Hopefully some other wonderful lady will be able to assist with your questions.

    xo, E

  • linn56
    linn56 Member Posts: 11
    edited February 2010

    Irishmom: My dad was on Paxil for about 10 years. He tapered off very gradually,. as per his doctor's instructions, when he started a new drug that was incompatible and more important. I think he took about 3 months. He would step down every 2 weeks or so. If he began to feel depressed, he brought it a tad up again until he felt stable. Then he would go back down again. (He called it "the Paxil dance" . 2 steps down, then one step up.) At the end, he was taking a fraction of a tablet every few days. 

    You don't necessarily have to start Tamoxifen immediately after rads end if you are still tapering off. I ended rads Dec 2 and just started Tamoxifen last Wednesday. My oncologist wanted me to recover some energy first.

  • ReginaR
    ReginaR Member Posts: 97
    edited February 2010

    HEY" BOTTLE OF T" FRIENDS!

    HAPPY VALENTINES TO ALL MY T BUDDIES!

    HOPE YOUR FEELING STRONGER EVERY DAY &  HOPE ALL ARE HAVING LOW OR NO SE OF T!

    WELL I STARTED MINE FEB 12, SO FAR SO GOOD!  BUT CRAVING COMFORT FOOD!

    HOPE WE ALL GET SOME TODAY- CHOCOLATES!!!

    HUGS

    GINA

  • CatbirdC
    CatbirdC Member Posts: 235
    edited February 2010

    Hi Tamoxibeauties ALL and YOU KNOW WHO YOU ARE.... LOLOLOLOLOL

    Caroline....thanks for that info.  I read it and if I'm understanding Tamoxifen sounds "purty darn good"  even when you're not an A-1  metabolizer.  Someone correct me if I misunderstood.  It's been used for 30 years with a good track record so that makes me feel more secure.  I don't think my insurance would pay for the test unless the oncologist wanted it.

    We're still living like we're in an igloo here in Ohio.  It is 22 degrees and just looks bleak.  There seems to be a slight flurry of snow almost 98% of the time.  But now we're thankful that's ALL it is once you get 20 inches at one spill.  LOL

    Take Care Everybody

    BonnieCool these shades will be used one day.....some day.

  • kcl65
    kcl65 Member Posts: 741
    edited February 2010

    Happy Valentines Day Tamoxibuddies!!!

    Bonnie ~ We are going to have to celebrate when you can start using your shades... lolCool

    Gina ~ Here's to no se's for you!!!! Enjoy your chocs!!

    Linn ~ Did you speak to the onc about T and your migrains? Tell me to mind my own business if need be! Wink As with Gina, I am wishing you no se's!!

    Have a wonderful day all!

    Kelly :)

  • flacracker
    flacracker Member Posts: 17
    edited February 2010

    Hello Tamoxibeauties, I am new to this topic. I am on my 3rd bottle of tamoxifen. My side effects consist of my some of my joints ache, HOT flashes and heartburn. Does anyone have any suggestion for heartburn remedy? Thanks and I hope everyone SE are minimal!

    Wanda

  • kcl65
    kcl65 Member Posts: 741
    edited February 2010

    Hello flacracker/Wanda, welcome to our little group. Yes, I think Jeanette (chevyboy) has a remedy for heartburn and will be able to answer that question for you!

    Hope everyone had a lovely day... it was a sunny and beautiful day today! I think my MIL brought the Southern Hemisphere weather with her...Wink

    Hugs,

    Kelly :)

  • Susie09
    Susie09 Member Posts: 225
    edited February 2010

    Good evening tamoxibeauties!  Yes, I am still alive!  lol  Sorry I haven't been posting, but, my hubby is off for a few days and I seem to have to spend it with him.  The nerve of him!  lol

    I hope everyone is doing well and had a great weekend and a wonderful Valentine's Day.  I did!  The best gift that I got though was something that couldn't be bought.  My hubby went outside and made hearts in the snow all over our acreage for me to be able to see one out of every window in the house.  I was so touched and so happy!  I started crying...I was so surprised and touched! 

    Well, it is late and I need to get to bed!  I will never catch up on this thread.  You girls just move too fast for me and it is so busy!  Just praying that you are all well!

    Have a great day tomorrow! 

    Love, Susie

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    Wanda-

    I take a pediatric dose of Prevacid before breakfast for my heart burn (I don't have any anymore!). T increases the efficacy of this drug, so I have reduced my before-T dose of 30 mg, to 15 mg and it seems to be enough.

    Good luck!

    C

  • LadyBaritone
    LadyBaritone Member Posts: 1
    edited February 2010

    Hi Gals,

    I've been on Tamox for 1 year now.  At first I had no SE. Within the last few months though, I've been a bit nauseated and weight that went UP with exercise and restricted food.  My MedOnc did some tests and my LFT's have been steadily going up over the past year where they are now double my starting values. An U/S showed that I had a fatty liver. So the tamox caused the weight gain that gave me my fatty liver. I have three options. 1-have my ovaries out and continue on some other med. 2-continue the tamox. 3-stop tamox and risk CA coming back.  Rock and a hard place!

  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited February 2010
    Hi Wanda!  Yes, I had heartburn before I even started taking Tamoxifen...But I tried the  smoothie I made when I had an ulcer!  It cured the ulcer, & since I started drinking it twice a day, I haven't had to take a Ranitidine ever since!  And I had to take it every day for the last 5 years....!  So try this.....Get some Alo Vera juice in the gallon jug from Walmart...It's only about $7.85... Make a smoothie with your favorite juice, add a banana, whip it all up, then add 1 or 2 cups of the aloe, and I like to add a little milk or that flavored cream...And I really LIKE it!   My husband just drinks the Aloe straitht, but I like it mixed either wirh Orange, or Grape juice....Yesterday, I added frozen Blueberries to the Grape juice!   And then drink it with Breakfast and Dinner!  I haven't taken anything for heartburn for 1 1/2 months now!   Hope this helps...let me know!   Jeannette
  • peg119
    peg119 Member Posts: 190
    edited February 2010

    Susie - what a wonderful romantic gesture for Valentines.  He must be one of the good guys.

    LadyBariton - that really stinks that we have to make decisions like that.  Good luck in whatever you decide.  I need to check with my med/onc about LFT's since I don't think they even drew a baseline.

     Hope everyone is doing okay.  I am really getting tired of the cold.

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    Lady Baritone - sorry you have such a tough decision!  My only advise - read as much as you can about all the alternatives, question your docs and then make your decision, knowing you have made the most informed decision you can.  GOOD LUCK

    Jeanette - how do you get over the aloe vera taste? I bought a bottle early on but most of it is still in the frig - I really dislike the taste and my smoothie doesn't seem to mask it.

    Have a great day everyone. Here, it is Family Day - a provincial holiday. Tomorrow we fly west to our cabin - so I may be absent for a few days, waiting to get connected there.

    C 

  • CatbirdC
    CatbirdC Member Posts: 235
    edited February 2010

    Hi all,

    You got a date KELLY  ~~  we're going to celebrate my warm weather some day.  Aha Aha !!!!!

    Susie ~~ what your husband did with the hearts sounds like something from that old movie Love Story.....just more than precious I think.

    Wanda  .....  Jeannette's smoothie works.  I like it with non-fat half and half.  Well I'd like it better with FAT half and half....but.   LOL  

    LadyB~~  My heart goes out to you making this tough decision.  Like the others I think all you can do is get all the info you can from your doctors and on the computer and then make the choice you truly feel in your gut is the right one for you.

    Weather Report:   4 to 8 inches between now and tomorrow.  Areas in PINK will get the 8 inches.  Guess where Cool lives.....in the PINK area.  What else!!!!!

    Bonnie

  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited February 2010
    bcamnb...Did you try  the one from Walmart?  It doesn't taste as "strong" as the ones from the Health Food Stores!  But even when I DID used to buy a gallons from the Aloe Vera Store, I drank it anyway, because it helped so much!   My Grandson makes a smoothie with vanilla ice cream, Ha!  And I just bought some Apple juice to try making a smoothie with that!  I used to drink the Aloe  in hot tea, before I went to bed, also!  Hope it helps you as much as it does me!  Jeannette 

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