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Bottle o Tamoxifen

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Comments

  • jo1955
    jo1955 Member Posts: 7,545
    edited January 2011

    Well, I am off to see the MO this morning to get my RX for Tamox.  I feel better about taking this vs the AI's after reading everyone's account of their SE's.  The AI's were horrible and won't do those again.  After the dreadful AI's, gonna see if I can start out taking a split dose - am & pm and see if that works better for me.

    Will keep you posted 

  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited January 2011

    Thinking of you Jo!  You are going to do just great!

  • jo1955
    jo1955 Member Posts: 7,545
    edited January 2011

    Chevyboy - Thanks so much.

    All the ladies on this thread have been a big help in my decision to go forward with the Tammy. 

  • didel
    didel Member Posts: 733
    edited January 2011

    Jo Good luck with your appt! Remember we're all on this ride together!!!

    Diane

  • tinkertude
    tinkertude Member Posts: 1,998
    edited January 2011

    Good luck Jo!!!!!. We are on the Tammy train together!

  • SusansGarden
    SusansGarden Member Posts: 754
    edited January 2011

    I am SO grateful you ladies are here!!!!!  I have an appt with my oncologist to get the Tammy Train prescription tomorrow!  Question:  I was going to ask him what he thought about me not starting it until the end of the month.  My semi-rational reasoning for this is a) I just started back to work after 5 weeks off  b) I am in the process of transitioning from Prozac to Effexor  ~ I wanted to be sure I wasn't thinking starting work or the Effexor was causing side effects or if it was the Tammy.

    The other reason (that my husband it totally against!) is that I want to lose another 5-10 lbs BEFORE I start Tamoxifen, since it may be harder to lose that once I take it.  My husband is horrified that I would pick weight over preventing cancer! ...but...but...but .....I didn't have to do radiation or chemo...so I'm actually starting Tamox a lot "earlier" in the game than most women? Right?  Am I just making excuses? Undecided 

  • whitedove
    whitedove Member Posts: 121
    edited January 2011

    PXSunshine

    Jo1955

    Yes, I too would love to hear more about Gylcine. Haven't slept through the night now so long I don't even want to say! I've tried Melatonin - tossing and turning every 10 min.... Calms Forte - so far, Still staring at the ceiling at 3 am.Cry

    Ladies, all your information is so helpful and the support here makes the ride all the more bearable. Thanks!

  • Beanius
    Beanius Member Posts: 1,494
    edited January 2011

    JanetinVirginia - I had a transvag US during dx when my SNB turned up 2 + nodes, the procedure was painless except you have to drink a lot of water and then hold it, also I had Aunt Flo show up so it was kinda embarrassing and messy, but the woman tech had vast years experience doing the test, so she made me feel okay about it all. My US was B9. I'm going to consult with a doctor who specializes in Gynecologic Oncology.

    Here is a link to her info: http://www.swedish.org/Physicians/Elise-Everett?returnUrl=%2fPhysicians%3fSpecialtyType%3d%26AdultSpecialtyID%3d-1%26PediatricSpecialtyID%3d-1%26AllSpecialtyID%3d-1%26LastName%3deverett%26Keyword%3d%26PostalCode%3d98104%26ClinicalInterestID%3d-1%26Gender%3d

    I had genetic testing for bc and was negative for BRCA1 & 2 and 7 other gene mutations, but have fam hx of ovarian and uterine cancer (and bc). From all the doctors I've talked to so far I'm in a gray area, so thought I would at least talk with a specialist for another opinion. I'm very interested in screening and whether she recommends hyster & ooph.

    Hope your 1/4 Tammy ticket is no problem!!! I took 1/2 a ticket this am and feel about the same as with 1/4 but glad to ease in.

    Jo - Wishing you all the best with Tammy, so far, this is my 3rd day and I haven't fallen off the planet or turned into a wherewolf. I maybe having some warm flashes, but nothing bothersome. I do notice brain fuzziness, but I just ended chemo a month ago, so it could be carry over from that. Anyway, I think it's important to get it going quickly after treatment.

    Lorieg - so glad 20 mg and nothing!! That's great news!!!

    Phxsunshine - thank you for the naturopath info, I will definitely check it out. I was doing research to see what is the minimum effective tammy dose. Looks like they used to prescribe more and 20 mg became a minimum or standard. I read somewhere about why 1 size fits all, cant' remember where I found the explanation, still it made little sense. So glad you are doing okay on it, I will make it work for me (like chevyboy says, I'm the boss!) Blessings to you too!

    Thanks to EVERYONE here for your help getting situated on the Tammy Train - choo choo!!! My thoughts and prayers are with you all, and I'm on board and ramping up speed...chooo chooo!!

  • phew
    phew Member Posts: 143
    edited January 2011
     JO  sounds like you are more confident about T   that's a good thing      you know like that our attitude has quite a bit to do with the therapuetic value of  any Rx    all aboard!
  • phew
    phew Member Posts: 143
    edited January 2011

    oops, was gonna also say Phxsunshin--  i think the one-size-fits-all concept is that our bodies use what they need and eliminate what they dont...sounds like a 12 step program!  escept for elders and very thin....is that sim to what you read?

    ~ ~ nancy carol 

  • rgiuff
    rgiuff Member Posts: 339
    edited January 2011

    SusansGarden, your reasoning makes perfect sense to me.  I too, have to know which thing is causing what, so would never start more than 1 new drug at a time.  Good luck to you with losing the weight, but that can be done even on the tamoxifen.  I initially gained a little bit of weight on it, but increased my exercise and then lost it again.

    Tell your husband to relax, it's only a couple of weeks we're talking about here, not months and months.  I didn't have chemo either, but did have radiation.  I didn't start my tamoxifen until 6 months after my lumpectomy, mainly because of a screw up in my Oncotype DX test, which delayed everything by several weeks.  With an early stage cancer, I wasn't that concerned though, and even was ambivalent about taking it at all.

  • jo1955
    jo1955 Member Posts: 7,545
    edited January 2011

    Got my ticket to board the tammy  train.  I will get on tonight.  Since I had so much trouble with the AI's I am only taking 10mg for the first week then work up to the full 20 mg after that.  My MO also gave me an RX for Effexor since my hot flashes are pretty bad right now and tammy will make them worse.  That will be a relief and maybe, just maybe I can get some sleep.

    My MO did bring up the subject of taking soy products while on Tamox and he said no - a glass of soy milk in the morning is okay but no more than what naturally comes in foods - no over the counter stuff.  Just thought I would pass that on. 

    SusansGardens - Tell hubby to chill out.  I finished rads over a month ago and I am just starting tammy.  You will be just fine - I think your decision makes perfect sense. 

    Beans -Thanks for the words of encouragement. 

  • swanseagirl
    swanseagirl Member Posts: 171
    edited January 2011

    All aboard!!!!!!!!!!!!!!!!!!!

    Jo see you on the train tonight :)

    Jules

  • SusansGarden
    SusansGarden Member Posts: 754
    edited January 2011

    Thanks Rose and Jo~  a can't believe that waiting a few weeks on something I will be taking for 5 years could make that much of a difference!  I will tell my husband that Rose and Jo said so! ;P

    Jo~ I am currently switching to Effexor and haven't noticed anything weird yet! :)  I even transitioned from being off for 5 weeks to going back to work full time this last Monday and so far so good. :)  I've been warning all my co-workers that I'll be starting my "fat sweaty bitch pills" soon ~ I'm going to make them guess when I've started them! Kiss 

  • jo1955
    jo1955 Member Posts: 7,545
    edited January 2011

    For those of you taking Effexor - when are you taking it - morning or night?   I was thinking night would be good since that is when my hot flashes are the worst.

    Jules - Hoping for a smooth, uneventful ride. 

  • SusansGarden
    SusansGarden Member Posts: 754
    edited January 2011

    I have to share with you ladies an email I received after telling a friend, who is a flight attendant, the news that I didn't have to do chemo...just the 5 years of Tamoxifien that can cause bloating, mood swings and hot flashes (i.e. my "fat sweaty bitch pills) ;)

    Her response:

    "BRAVO Susan...So happy to hear the good news.  Fat Sweaty Bee's have built this country, lead armies and broke through huge barriers.  My flight attendant girlfriends that take Tamoxifen are the gals we send down the aisles on the planes.. It's amazing how many seat belt clicks we start to hear!"

  • swanseagirl
    swanseagirl Member Posts: 171
    edited January 2011

    Susan, too funny!

    I'm flying back to the UK this February. I'll be watching the flight attendants closely. LOL

    Jules

  • EastCoastGrl
    EastCoastGrl Member Posts: 206
    edited January 2011

    LOL, love that SusansGarden!! :)  I won't be able to see a flight attendant coming down the isle now without smiling and thinking about that. :)

    Ok, got my script today. My Onco is ok with me starting at lower doses if it helps me to gently start on this drug. Very glad about that. She called it in as I sat there and made sure my pharmacy had the 10 mg tabs because she didn't want me to have to halve and quarter the 20 mg tabs. She mentioned starting at 5 but honestly I may start at 2.5mg, not sure if it will make that much difference physically but mentally will help me! 

    Here's my thing.....I really don't want to start until after my exchange surgery. I had my last fill today so surgery is scheduled for 4th Mar. So, two more months. I just feel calm and ok to do the surgery and know that if I get anxiety and some of those other SE from Tamoxifen it might really mess with me. (As I've said, I think a million times here, sorry, that I had awful reaction to Zoloft in the past and I can tell you there would be no way I'd of wanted to go under when I was going through what I was going through at that time....so I have my reasons for this, that may seem silly to others but are VERY real and valid for me)

    She did say hmmm, you had surgery on Oct 4th and we still don't have you on anything yet. ( I had onco score of 9 so no chemo for me) Almost like it was a little worrisome to her that I was "unprotected" still. But, then she said, well, if you'd done chemo you wouldn't of started it yet anyway. So, how imperitive is it I wonder to wait or not wait two more months with my early stage DX? I saw her yesterday and went to PS today. Did not realize today would be last fill, was supposed to have 3 more. If I'd known that I'd of asked her if it would be ok to wait. I figured another whole month would be too long. I will probably call to ask her but what do all of you think?

  • phxsunshine
    phxsunshine Member Posts: 156
    edited January 2011

    whitedove ~ I don't know what else to tell you, except Glycine is an amino acid produced in our own bodies - here's a link from WebMD: http://www.webmd.com/vitamins-supplements/ingredientmono-1072-GLYCINE.aspx?activeIngredientId=1072&activeIngredientName=GLYCINE

    I really thought I was going to go batshit not sleeping.  My imagination goes to bad places in a hurry with all of this and when I was laying in my bed at 3 in the morning, that's where it wanted to go.  Then, in the morning,  I'd be overtired and not feel right in the head and I just couldn't cope very well with anything. If this simple, inexpensive fix will help somebody else, I'd be happy with that.  Last night I set a new record - 9 hours!!  I haven't slept 9 hours in a row in years.  It was cloudy out this morning and I think the lack of light had something to do with it, but that felt good! 

  • Sandeeonherown
    Sandeeonherown Member Posts: 1,781
    edited January 2011

    Good to know I am not alone on the emotion train....I decided to start my Tamo at the same time as radiation because the idea of waiting for onemore thing to start...well, it just about did me in...I had four melt downs during radiation but had lots of energy as I have been going to the gym, African Dance classes and siged up with a personal trainer to ensure I do not gain the dreaded pounds *at 4'10 1/2", I cannot afford any more weight!)...When I do get upset, I cry for hours...feels like PMS at its worst but I haven't had a period in 18 months and befor ethat very scanty...thought I was done with these completely out of control feelings...

    So..since I am not I have decided on a few things to get me through:

    1. I am going to ride the emotion train, knowing it is temporary and a friend is just a phone call away if I choose to make the call...cancer is an opportunity to evaluate my life and tamoxifen is helping me to have a longer time to do it in

    2.  I am going to remind myself of what my oncologist old me...Tamoxifen has been saving women's lives for the past 50 years. I plan on being a part of those stats

    3. I am going to be fitter than ever as a result of this cancer diagnosis and this 5year medication plan. I am making sure I eat healthy food 90% of the time, am exercising 2-4 times per week and making it a priority and not an add-on and I am surrounding myself with loving friends so my heart is fit in more ways than one

    4. If I believe I won't have an allergic reaction, and remind myself every day that it is saving my life, tamoxifen is much more tolerable. I will try the suggestions of 10mg in the am and 10mgs in he pm and will find the best time of day for me to take it

    5. I will remind myself daily that Tamoxifen is a mini-army in a white pill...it is fighting the bad guys in my body and putting a layer of latex on cells that might otherwise not be safe...

    6. I will rmeind myself daily that I will save on heat because of hte hot flashes..and I will dress in layers, sleep with my window open and take a heated bean bag to bed with me rather than turn on the heat and wake up in a puddle....

    7. and last....I will remember that I am alive...that I am blessed  and that because of modern scienc, I will likely remain cancer free....

    And last, I will do whatever I can that is healthy to ensure I sleep ..because that is when we heal. Like many of you, I am not sleeping well and have not slept well for 18 months ...onset of menopause, my partner of 16 years leaving me and then, of course, the cancer diagnosis...but melatonin,benadryl, zopliclone, exercize, adrenal gland support....whatever works. Your naturopath can help and so can your pharmacist.

    We WILL get through this ladies. We will...so go ahead and cry...more room out than in.

  • juli0212
    juli0212 Member Posts: 801
    edited January 2011

    My oncologist wanted me to wait to take the tamoxifen until after radiation, as he said, radiation causes its own side effects, why add more to the mix at that time?  So, I started the tamoxifen 2 weeks after last radiation Feb. 2007.  Everyone is different.  I'm now off everything, as we switched to an AI in Sept. (Aromasin) 2010, and my period started back up again Xmas Day after 4 years of total menopause (labs say so too).  Soooooo, next is gyn specialist, oncologist and tests/labs.  Oh...joy...not...yeah, not in the best frame of mind right now.   ~juli

    *Was just adding my .02 about when I started the tamoxifen, and only for 3 1/2 years, not 5, onco wanted me on Aromasin for 7 more years, am off it now til we figure out what's going on, which will be a month off of tamox OR an AI...makes me a bit nervous.*

  • janet in virginia
    janet in virginia Member Posts: 923
    edited January 2011

    Love your list Sandee!

    East Coast - Worth a call to your onc to ask.  I'm not sure what exchange surgery involves, but I believe any time you have surgery you have to stop Tamox anyway beforehand (just like stopping aspirin, etc.) 

    Thanks Beans - talking to my gyn Friday about the US.

    ps - Can you take Benadryl with Tamox?  I thought I read somewhere that you can't.  I'll have to switch my allergy season tactics I guess.

  • juli0212
    juli0212 Member Posts: 801
    edited January 2011

    EastCoastGirl:  You've got a lot going on with your vitamin d issues AND now tamoxifen!  Yep, been following all these threads.  More power to you, girlie!  (I had issues with zoloft as well, but a friend of mine swears by it for her dx of panic attacks, we're ALL different!)    ~juli

  • EastCoastGrl
    EastCoastGrl Member Posts: 206
    edited January 2011

    Hey Janet...I am told that there is no need to stop Tamox because it shouldn't cause any problems with that type of surgery. It also has a very long half life so wouldn't do much good to stop it anyway. Both my Onc and PS told me this. I know others are told to go off though, it's all so confusing.

    I'm just torn, don't want to be unprotected but don't want to be a mental basket case having to go under for surgery. 

    Love your list also Sandee! Might have to print that out as a reminder to read daily :)

  • jan508
    jan508 Member Posts: 724
    edited January 2011

    I'm quite anxious for the winter to be over to see if all this dryness (hair, skin) is from the dry heat in the house (even tough we have humidifiers) or the Tamox.

    I stated in October, just when the cold air was getting here so I think I'll wait to see if I can attribute the dryness to the meds.

    Jan

  • Sandeeonherown
    Sandeeonherown Member Posts: 1,781
    edited January 2011

    Thanks Eastcoastgirl..are you Eas coast Canada or USA or some other country? (I ask because I am in Nova Scotia, Canada). I forgot to add one thing to my list and that is

    8. Read  books and any material that empowers you..."Crazy Sexy Cancer tips" is a great read..."You can heal your life" is a beautiful book with plenty to take away from it..."Self mastery" meditation cards and focus on one positive attribution per day..."Clean living" magaine which focuses on eating well and being healthy..."The happiness project" , written by a woman who decided to focus on one aspect of her life each month and to analyze it as she went along...information is power...just don't read the sies that instill panic...

  • tinkertude
    tinkertude Member Posts: 1,998
    edited January 2011

    Susan I love thatresponse too funny thanks for sharing!!!

    Hugs to all the Tammy girls!

  • tinkertude
    tinkertude Member Posts: 1,998
    edited January 2011

    Sandee I absolutley LOVE your lists!!!. very wise and inspirational and think I too will put them into practice!

    Thanks!!!!

  • EastCoastGrl
    EastCoastGrl Member Posts: 206
    edited January 2011

    Sandee, I am East Coast USA girl. :) I live in the Hampton Roads area of Virginia. Literally at the water....so very much East "Coast". :)

  • Sandeeonherown
    Sandeeonherown Member Posts: 1,781
    edited January 2011

    You are all very welcome...lists help me to progcress and I try to aim owards anything and everying that makes me happy...i picked up a string (ceiling to floor) of bright colourful shells and have orange, bright green, plants and a little shelf of things i consider it sacred,....and I am trynig to get my 4 hugs in eavery whoch we need to be healthy...it work...or at least it soothes your soul and connects you with people who likley needs hugs too.

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