Bottle 'o Tamoxifen

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  • jo1955
    jo1955 Member Posts: 8,543
    edited March 2011

    Linda - Some of the ladies started out slowly - taking 5mg and working their way up to the full dose.  You will need to experiment and find the time of day that is best for you.  I agree with the others, not everyone has side effects and many are doable.  The side effects, if any far outweigh the risk of a recurrence.  I look at it as an added insurance policy.  

    Sherry - Like I have always said - Great minds think alike.  I will always share my chocolates with you.

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  • woodstock
    woodstock Member Posts: 53
    edited March 2011

    Top of foot hurts.  I have a small one and it was painful.

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  • tinkertude
    tinkertude Member Posts: 2,047
    edited March 2011

    Linda it is true not everyone has se and for me starting up slowly helped alot and then splitting the does.. Chabba made a good point too, our bodies are already kinda "compromised" for all the other bc treatmenst we have been through, so I think we are more sensitive maybe to it...its ok to be a little afraid but being afraid doesnt mean you cant do it, we all were ans sometimes still are afraid on some level. We will be here for you...you can do it girl... beats the alternative! hugs and good luck!

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  • tinkertude
    tinkertude Member Posts: 2,047
    edited March 2011

    ok ONC. office just called and they said it was common not to get periods while on Tamoxifen, so that explains that. She said oh and be very careful because just because your not getting your period does not mean your not ovulating... interesting... yikes that would NOT be funny! ...

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  • June2268
    June2268 Member Posts: 1,202
    edited March 2011

    Alicia I know we are going to be up in the 60's on Thurs and Fri and I sure this nice weather has got to do some good for both of us......how are you today??

    ECG I too get miserable with people these days.  I guess you could say I am short with them,......I am so tired of people thinking my days of BC are over.....wish they only had a clue.....

    Linda, Cabba, Schipmom, Didel, Jo,, Tink and  Sherry and anyone else I might have forgotten but not deliberate....- THANK YOU ladies for letting me vent last night as I so needed some women to talk to ......I love my husband more than anything but he also brought me down as I just wanted to talk about everything that is going on with me and then my DAD and his comment was" you used to be so strong and muster through everything....I want my June back"  I almost SHIT that he of all people would say something like that, but I guess I used to be really strong and not sure if it is Tamoxifen or just hormonal, but I am an emotional roller coaster all the time these days.....I hate it......so I made an appointment with my Primary to find out why I feel funky (stomach) and hopefully with the weather getting nice I can get back in the groove......life can sure be hard but without you ladies I would be lost, so THANK YOU AGAIN!!!!!

    Hugs to you all!

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  • Linda_M
    Linda_M Member Posts: 68
    edited March 2011

    Ladies,

    Chabba, you have a very valid point..I never looked at it from that perspective.  You are all so right though in that if I can do anything to prevent this horrible disease, I need to.  I just this past week had my 4th 'bad' pap test.  I have been getting them every 6 months--I now have my 4th colposcopy in a couple weeks.  I feel like between the lower half and the upper half I am a cancer time bomb waiting to go off.  Physically I am recovered from my 3 surgeries (biopsies); mentally I am getting there (I had two of them in one day).  The surgeon has me on Celexa and it is starting to help.  I think a couple more weeks and I will be ready start the Tamoxifen. 

    Thank you ALL so much for the input--it has definitely helped with clearing things through my head.

    Linda

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  • tinkertude
    tinkertude Member Posts: 2,047
    edited March 2011

    JUNE..It is OK not to be strong ll the time it really is. It may just scare him and he may be having a hard time dealing too, my hubbys way is to joke about everything... but this is a very emotional time and we have the right to feel how we feel... in our own time we will get to the next step... hugs and good luck at the docs!

    Linda glad you are feeling clear about things... good luck to you! :)

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  • EastCoastGrl
    EastCoastGrl Member Posts: 282
    edited March 2011
    June, I can SO relate to that!! I am definitely on a crazy emotional rollar coaster, with very deep valleys and not so high, highs. I would love a high high about now! Wink Anyway, I am also the usually the strong one, taking care of everyone, doing what needs to be done, never asking for help and now I am feeling weak....and needy. My husband is the type that sees everything black and white and likes me strong. He has even said in the past (before BC) that it bothers him when I am acting needy or weak. I think he doesn't know how to deal with it...those kind of feelings...or is uncomfortable with it, I don't know. But I'm somewhat disappointed in him through this sometimes also...he does the best he can I suppose but seems just no one is living up to whatever in the world I think it is they are supposed to! Don't ask me, I have no clue, I'm just in a really weird place in my mind these days. Frown
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  • jo1955
    jo1955 Member Posts: 8,543
    edited March 2011
    June - It is okay not to be strong all the time.  Husbands don't understand the emotional roller coaster bc puts us on.  They can't comprehend it not matter how hard we try and explain it to them. Like mine, they are going to have to be patient and take it one day at a time like we do.  Time really does heal all wounds and our time will come soon.  Big cyber hugs to you my friend.
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  • NJvictoria
    NJvictoria Member Posts: 119
    edited March 2011

    Okay Ladies,

    So I just got a call from my insurance company saying that my oncologist would like me to have the tamoxifen genetic testing marker test done on me. They send me a kit that includes 4 cheek swabs that I use and send back to the lab. The test looks for a gene that lets the doctor know if my body is able to metabolize the tamoxifen so I get the most benefit from it.

    Anyone out there have this test done?? Surprised the heck out of me! I'll definitely take the test. I'd hate to think that I was taking something that wasn't doing me any good :P

    Vikki

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  • EastCoastGrl
    EastCoastGrl Member Posts: 282
    edited March 2011

    If this is for the CYP2D6 test I had it done. I asked my Onc for it. She said most believe it is not necessary to do anymore but she would do it for me. Mine was tested from my blood. I ended up being an "extensive metabolizer". She did say the reason they don't like to do the test anymore is because some come back poor or intermediate metabolizers and don't want to take T but studies have not proven that they get less benefit than an extensive metabolizer. Whatever, ha, I wanted the test anyway just so I'd know for my own peace of mind.

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  • jo1955
    jo1955 Member Posts: 8,543
    edited March 2011

    Vikki - I have never heard of such a thing.  I amazes me that an insurance company would want you to do the test when they usually don't want extra tests so they don't have to pay for them.

    I have heard of the  CYP2D6 test and my onc thinks it is too unreliable so I have not had it done.  Seems I have read that other ladies are having various lab tests done for things such as this, tumor marker tests and such.  He does run labs, I will have to ask the next time I go in but it seems he only does tests like CTs & MRIs only when absolutely necessary.  When I was first diagnosed he did not do an oncotype dx test.  Well I did not know anything about that until I found this website.  When I asked him why he did not do one, he said they are very expensive tests and he felt he did not need to do it - that he had all the information from my biopsy path report he needed to make a decision for no chemo - just rads + tamox.  

    i still find this whole process with oncs confusing.  Seems everyone does things so differently.  

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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited March 2011

    June - I am so sorry about the conversation you had with your dad...I remember having a similar one with my dad...eeeh....never easy but you know....tearing up is ok...that too is strength and shows your love. Being srong for him and for you does not necessarily mean being stoic, hmm?

    Sherry- How are you doing?

    Linda- as others have said...we post on this site because we have had the odd side effect or are curious about them. I have stayed on this train because the gals here are fantastic and supportive.Spliting my does in half (10mgs inam and 10mgs in pm) means I do not hav eany side effects these days..the sleeplessness has nothign to do with tami, I am afraid. ?Just life....if it can save your life and keep you from having a recurrence...why not start it and give yourself 3 months to try....you can always stop taking it..

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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited March 2011

    June - this IS the place to vent....let it out...we are indeed here !

    Eastcoastgirl- yeah..hard not to be disappointed with the ones we love sometimes....what is perceived as our weakness (read - our fear and exhaustion) scares the crap out of them...I am thinking that most of us on this train are the 'strong ones'...taking care of everyone around us and those we come in contact with for a moment or two in our day...our needing someone and expressing that scares people.....and they react to that fear by saying things that most of us would never dream of verbalizing....glad you can verbalize it here!

    re. moods....I am ok these days...last weekend was another story completely but I feel more like me the last few days....(I am thinking of life in 24 hour blocks these days)....Sunday was wonky so I stayed by myself and did housework....but the last two have been good...the 24 hour rule is working for me right now....like AA for breasct cancer..breathe and take one day at a time..be grateful for today,....count today's blessings and know that tomorrow will be a new day and potentially better day...just get through today!

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  • jo1955
    jo1955 Member Posts: 8,543
    edited March 2011

    Sandee - I have to so agree with the last part of your post and think in 24 hour blocks and to be gratefu for everyday - tomorrow is going to be a much better day.

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  • Harley44
    Harley44 Member Posts: 5,446
    edited March 2011

    Hello ladies...  Today is my FOUR year cancerversary!  On March 15, 2007, my surgeon took IT out....  so HURRAY for me!

    Hope everyone is doing great!!   Save some pasta for me!!

    Harley

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  • jo1955
    jo1955 Member Posts: 8,543
    edited March 2011

    Harley -  WOO HOO!  DOING THE HAPPY DANCE WITH YOU!  CONGRATS ON THE 4 YEAR CANCERVERSAY.  

    Since I have been given the title of Queen of Food on this thread and in celebration of your cancerversay, I whipped up a pasta dish just for you.

                                     

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  • June2268
    June2268 Member Posts: 1,202
    edited March 2011

    Thanks ladies for the support!  I so love each and every one of you!!

    Sherri how do you like having 7 brothers and where do you fall in line? 

    Went to my primary today as I see my MO at the end of the month.  She took 6 vials of blood and put me on Prilosec.  She is hoping that it is acid/bacteria which an antibiotic and Prilosec for 2 months should clear up.  She did mention to me that she was testing my liver along with so many other test I don't remember, however she is also doing a pregnancy test....WTH!!  Anyway, within a day or 2 I shall know....so fingers crossed ladies that it is something little and easy to cure.

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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited March 2011

    Congratulations Harley...you are an inspiration!

    Jo- yeah...the 24 hour rule makes it all doable, hmm? if it is a lousy day, you only have X number left...if it is a good one, you can relish the remaining hours...makes acceptance much easier

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  • jo1955
    jo1955 Member Posts: 8,543
    edited March 2011

    June - Hope it is an easy fix.

    Sandee - I think the 24 hour rule is much less stressful.   

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  • June2268
    June2268 Member Posts: 1,202
    edited March 2011

    Harley CONGRATS.....4 years!!!

    Jo that food looks so good and tastes even better.....

    Tink Tink where are you???

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  • slinky
    slinky Member Posts: 397
    edited March 2011

    This is probably a stupid question, but doesn't Tamoxifen push us into menopause? And if we were to naturally go into menopause, wouldn't we experience the same side effects (if any) as Tamoxifen?

    I really don't know and when I asked my mom, she just said "its the s**ts getting old".

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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited March 2011

    well.....then again, I have been very happy not to be pmsy sinc ei started peri-menopause...and tami simply solidified it...sooooo good not to feel that way ever again. That is a plus! And tamoxifen helps keep our bones strong so that is one thing we don't hav eto worry about for the next 5 years....be aware of, yes but not worry!

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  • EastCoastGrl
    EastCoastGrl Member Posts: 282
    edited March 2011

    Sandee...I LOVE that....thanks so much for the 24 hour rule! :) I can do that...such a good way to cope and focus on the now.

    June, I'm glad your dr is going to do some testing on you. Hopefully you will have some peace and resolution soon.

    Harley, Contrats!!!!! :)))))

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  • tinkertude
    tinkertude Member Posts: 2,047
    edited March 2011

    JUNE...SO GLAD YOUr doc is going to do some blood work and be pro active... hoping this works well for you!!! hugs

    Harley.... congrats you rock!!!!

    SANDEE, you hit the nail on the head, We are always lookign out for others be it hubby friends parents children, that we froget and so do the people around us that  we need taking care of sometimes too. I agree I think it scares them when we are "down" so to speak. I rememer being at lunch with my FIL wife and I just started to cry bad bad day and then she started to cry so I ended up consoling her lol it was kinda funny in the end actually.... I LOVE the 24 hour rule... you inspire me girl :)

    JO...OMG!!!I was craving pasta!!! how DO you know these things you rock my friend !!!!

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  • tinkertude
    tinkertude Member Posts: 2,047
    edited March 2011

    slinky..I dont believe it pushes us into menapuse just gives us menapausal symptoms...

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  • chabba
    chabba Member Posts: 5,065
    edited March 2011

    And SE's that have nothing to do with menopause as I experiened it. I didn't have toe cramps or fatigue with it, got them now.

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  • tinkertude
    tinkertude Member Posts: 2,047
    edited March 2011

    Thats true Chabba.. meanpause symptoms and soo much more... the gift that keeps on giving lol!

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  • Chocolaterocks
    Chocolaterocks Member Posts: 364
    edited March 2011

    Hey New Jersey Vikki,

    Wow, I am impressed I think that test would be excellent and actually would like it as I am soon suppose to start tam. Need to have a repeat vag ultrasound 1st (long story). But with an oncotype of 1- I would really like to know.  so I would say go for it and would you share who your onco is since I am looking for a 2nd opinion ( prvte message) would be great.. My onco poo poed the test and said it was not reliable, and also had similar reaction to oncotype but I one that battle and was happy to have a 1. However, it looked like the Canadian folks have it frequently?

    thanks again,

    Chocolate

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  • DiDel
    DiDel Member Posts: 1,329
    edited March 2011

    Harley Congrats on 4 yrs!! Thats awesome!!!!!!

    I really wanted to chat but too tired,,,,maybe tomorrow.

    Good night ladies!!

    Diane

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