Bottle 'o Tamoxifen

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited April 2011

    June-Chevy has been on the after radiation thread.  You may have to pop over there and give her a shout. She is a hoot!  How is your Dad doing?

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

    I was on the After Rads thread and found Beans and asked her to pop in on the Tami Train.  Sure glad I did.  I really missed her here.

    June - Sure miss seeing you here.  How are you doing girlfriend?

    Tink - You have been under so much stress lately - there are all kinds of things our bodies can put us through.  Going down to 10mg of Tammi may help out.  You should treat yourself to a nice massage - it will do wonders for the stress.

    Sherry - How are you holding up?  Hope your dad is coming along in his recovery.

    I think it is time for a Group Hug!

                                       

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited April 2011

    Awwwwwwwwwwwwweeeeeeeeeeeeeeeeee group hugs are nice.

    Dad is doing fine today just in alot of pain.  One of my brothers taught my mom how to text on her new phone so she had texted me off and on all day.  I think he only put my number in her phone. hehe

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

    awwww i love group hugs too and I love you guys!!!!!.....

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  • JustmeAlicia
    JustmeAlicia Member Posts: 1,529
    edited April 2011

    Jules ~ thinking of you today.  Please let us know how you made out.

    Sherry ~ cute about mom texting you.  My mom could never figure that out.  Hoping your dad's pain subsides.

    Chevyboy ~ ahhhhh  yes MISS her !!!

    Jo ~ yes the dizziness is probably stress.  I have been cleaning like crazy for 2 days and haven't had any dizzy, anxiety spells.  Maybe I have to CLEAN more !  Just breathe my friend.

    June ~ how are you doing???

    Agreed ~ GROUP ((((HUG)))) is in ORDER !!!!

    XO

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

    Tink - When you get done with your house, you can always come to mine.  I have lots to do - it is time for "spring" cleaning.  hehehe.  Just a thought.

    Alicia - Are you ready for another cruise yet?  Whew!  All those girls in my suitcases sure wore me out.  I will have an extra one next time just for them.

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

    oh that was Alicia doing all the cleaning not me... my house could use a good once over though... so Alicia when your done with Jo"s...... just saying.... lol  ..  maybe if i started some house work though my dizziness would go away just cant seem to get passed it to start... maybe soon..

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  • jo1955
    jo1955 Member Posts: 8,543
    edited April 2011
    Tink - DUH!  If I would just read I would have known it was Alicia.  I blame it on old age.  Sorry about that.
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  • JustmeAlicia
    JustmeAlicia Member Posts: 1,529
    edited April 2011

    that's okay ~ and DUH I meant TINK on the dizzy......  again try cleaning, or NOT ~ lol

    :)

    JO ~ yes, ready for another cruise, may take one to Canada with my mom and kids this summer.  I really like cruisin'.  You ready?  And yes we need an entire suitcase to stow the girls in.

    HUGS !!!

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

    Alicai - Guess it is a day for brain farts.  

    Hubby and I are already looking at another cruise for fall of 2012.  It takes me awhile to save up the money to go.  I like to be able to have the money and pay the credit card off when I get home. We are talking about going to either New Orleans or Tampa and going to Cozumel, Honduras & Belize. Haven't been to Honduras but have been to the other two places. 

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

    Shari- my story is similar but not 11 mammograms...maybe 4...but nothing wrong with me up until that point...dr visits for paps and sinusitis once a year, you know? It can certainly throw you for a loop and shock is par for the course..and the odd bad day...

    Jules- How did it go today? Hope you did something afterwards that helped bring you both a semblance of calm

    Tink- glad you were bumped down on the tami a bit...funny how my oncologist said 'you can go off it..we will check again in July...no problem....the tami is/was an extra precaution' and yours won't let you go off it for awhile..again...every dr and thier belief in the protocol etc.is different....our diagnoses are similar....if going down to 10 calms you right now...good! long term and short term need to be considered, hmm? hugs to you...and a lavender-bubbly bath!

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

    True Sande.. I think min is a little less flexable though because my onco type was intermediate and I did not do chemo which she said was up to me even with a recommendation of it said I could go either way so I think for me its my only back up and that oncotype score comes back to kinda haunt me... I am hoping this helps deep calming breathes and maybe some housework tomorrow :)..hugs to you to my dear friend!!!!

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  • sgreenarch
    sgreenarch Member Posts: 528
    edited April 2011

    Hi to my wonderful new support group. I am already so grateful to have you. I apologize if I am seeming too needy. In my pre-BC days I was not so much like this, but now I feel that I need support more often than before. I spend so much of my day acting like a 'normal' person, working, mothering, and doing all the millions of things that we women do. I act as if nothing is wrong and can usually pull it off, but there are moments when I need to just be around others who understand the undercurrent that is this disease. There are stretches where I forget that this ever happened, for example at work, or when I'm cooking, swimming, etc. and that's great. But then there are times when I feel like I'm different than everyone else in the room in a very quiet way, and it's a bit of a lonely feeling. It is nice to know there is a place I can go to feel the other kind of 'normal.'

     Question for you and as I'm new here, please direct me to another thread if I should be asking this elsewhere. 

     I'm trying not to be hysterical. I had a big series of hormonal blood tests done as my situation is a bit complicated and got a result that is abnormal and that I don't understand.

    Background: I had a hysterectomy 3 yrs ago due to a gigantic fast growing fibroid, kept ovaries. Am now 50 and 'perimenopausal' whatever that means. Can't know if I'm really menopausal from lack of periods as I don't have them, so need to do blood tests. I think the question is to see how active my ovaries still are. I was having ovary pain and went to the gyn last week and he did an US. Said the ovaries looked fine and cyst free (I've had cysts before and this pain was much milder.) At time of hysterectomy every single expert said to hold onto these ovaries as the benefits of keeping them (Cardiac, Bone health) outweighed the negatives. That was pre BC. Post BC dx they still recommended keeping them for similar reasons and also because I'm so close to menopause age anyway.

     I started taking tamoxifen in Sept and at that point my estradiol levels (E2) were 203 pmol/l. Now they are 2469 pmol/l. That seems to be off any chart I can find. Is this a result of the tamoxifen? Anyone else have results like this? Know what it means? I'll check with the gyn but I'd love some reassurance soon that this is ok...

    Trying to stay calm, but again, these medical tests do throw me. 

    Thanks, Shari

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  • suzanneinphoenix
    suzanneinphoenix Member Posts: 208
    edited April 2011

    Hi, Sandeeonherown......

    I was told my diagnosis on 6/28/10, and we are pretty similiar....after 7.5 months of Tamoxifen, my ONC is allowing a break due to the SE's.  He said if I felt quite a bit better off of it, I would have to decide if I would not take it anymore.  He said it was all hypothetical, and that I may be on that Tami~train for no reason......not sure what I want to do, but I know I feel 90% better after being off of it for two weeks!

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

    sgreenarch - We all have moments when we don't feel "normal"  That is a hard word to define after a dx of BC.  We constantly ask ourselves what our "new normal" is.  I will say it does get better but the little stresses and anxiety attacks will always be there, particularly when we are facing tests or appt.  Whenever you don't understand something, ask, ask, ask and don't give up until you get an answer that makes sense to you.  This whole BC thing can be very complicated.

    This is a great group of ladies that will be here to support you every step of the way.

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

    sgreenarch....Jo is right we all go through that and i know still do. It will be a year in June and I am still trying to find the "new normal" just when i think i have it down something changes.... Im sorry I dont know anything about that test I am pre-menapausal so doc has done any kind of bloodwork like that.. keep us posted though.... hugs to you

    Hi Jo... pouring here again.... gonna exercise and maybe straighten up trying to shake this icky feeling... think things just ned to settle down

    june sherry, sandee,jules  ecg and all my other bc peeps... hope your having a great day miss you

    hugs

    maria

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited April 2011

    Shari-those number are really high.  I also had a hysterectomy 17 years ago and because I was so young kept my ovaries.  So hormone test are all they can go by for me as to whether I am in menopause which I am not.  They checked mine just before starting tammi and will check them every year so I have not had another one done. I would definitely ask a Dr. about those numbers.

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

    Hi Tink - Please send me some rain - we really do need some.  Hope you get to feeling better.

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited April 2011

    Jo no kidding it is so dry here.

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  • Beanius
    Beanius Member Posts: 1,697
    edited April 2011

    Hi Ladies,

    Hope you are all doing well. I'm continuing to have a rash problem that is now very lightly on my arms too. I've been doing some research and have a call into my oncologist. There are so many helpful posts that women have put on different threads. Here is what I've found:

    1. It could be that the refill of Tami was generic and has a filler that I'm alergic to, so maybe the non-generic will relieve...it just so happens the rash did start right when I got a refill! I guess you can ask to get your prescription for non-generic. Also my last prescript was in the non-generic bottle and my refil isn't...wow, imagine if it could be something this simple. I hope so as I want to stay on Tami until my MO says to switch.

    2. There is a web site with tamoxifen drug interactions - you smarties probably all found this already, but Beanius (not genius) just found it...I was taking some benedryl which it turns out is a no-no with Tami, but I'm going to try Claritin or Chlor-Trimeton which don't appear to be a problem with Tami. Also the 1% hydrocortisone cream appears to be ok with Tami. My RO had suggested Claritin during radiation for some itching along with 1% hydrocortisone cream...I have used Chlor-Trimeton in the past for regular alergies from pollen and it didn't make me drowsy at low dosages.

    http://www.drugs.com/drug-interactions/tamoxifen.html

    3. Some women have to stop Tami due to rashes. I think I read about ovary removal instead and then switching to something like Femara. I'm planning to have ovaries out next Marchish timeframe due to fam history of ovarian cancer.

    4. There seem to be a lot of different types of rashes, so kind of hard to exactly point to Tami as the cause.

    5. I found a reference to a diagnosis by an alergy doctor of Porphyria, but this looks like a very complicated thing to diagnose and it's a group of alergies seems to be hereditary.

    For those of you who have not gotten rashes - hurray! For any who have, maybe this will be a helpful post. ~Beans

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  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited April 2011

    Greetings to all of you - Chevyboy has also been seen on the Naturalgirls thread.  She seems to be doing better with her hearing aids.  I am also off Tami, so haven't been here, but do keep all of you in my heart each day.  So many of you have so much additional stress with family and work issues along with the BC, and I just send you all my thoughts of lovingkindness as I meditate each day.  Shari, hang out with these ladies - they are a lot of fun and very supportive!

    Linda

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

    well ladies th fun never ends around here... spent all day at the hospital with my goddaughter she had to have surgry to hav a MRSA would drained... poor little thing is ony 2 1/2  she was quite the little trooper..

    Jo we have had such bad storms here so unpredictable and wird for this time of year.

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

    Tink - Hope your god daughter is doing well and will be home soon.  

    Weather in your part of the country is really weird.  I have been watching the news and this is really unusual for this time of year.

    Hang in there sweetie! 

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  • JustmeAlicia
    JustmeAlicia Member Posts: 1,529
    edited April 2011

    Tink ~ so sorry about your god daughter.  :(  Hope she is feeling ok.

    No word from Jules?

    June ~ where are you?? 

    Well tomorrow I have my surgery ~ will post when I can.  I will miss our Happy hours Pillow Fight tomorrow night !!  Have fun girls ~

    Big hugs !

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

    Alicia - Good luck on your surgery and best wishes for a speedy recovery.  (((HUGS)))  We will be thinking about you.

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

    Tink- yep...different but the same.....whatever works and keeps you safe....10mgs does both...keeps you safe with the invisible umbrella and helps you to stay calm at the moment...deep breaths my friend. Sending you hugs..how is everyone doing ???

    Shari- perimenopause is so hard...a few years ago I thought ' aha...menopause and one year to the day, got my period!....it has now been 2 years (I am 49) without one but estrogen is still firing away....really do not want to go on the table to have anything else taken out of me if I don't have to...I would call my oncologist or her/his nurse and ask what it means. They are happy to reassure.

    suzanneinphoenix- sooo hard to know what to do isn't it? it is all a statistics game...I know we need to do whatever we can to keep the numbers low and our chances down but honestly...quality of life? Being off of it since early April means I have slept better...and if I sleep better, I can heal better...that is my way of thinking anyhow....hard to know....keep me posted on what you decide to do. I had my blood work done today ( heart stuff and to check my vitamin D and my estrogen levels)....might bring me some clarity..might not.

    Jo/Sherry- Can I send you my rain and let Tink keep hers??It knocked out something this afernoon ( the wind and rain) and half the lights were out downtown!

    Greenarch- this is the best place to come when you feel you need to talk to someone who understands..it is where I do 90% of my 'talking' ...otherwise, I tell people it is status quo...my near and dear are very sympathetic but this scares the crap out of them. I am the strong one,,,,the healthy one...the one with the rosy disposition and oulook on life..if this can happen to me etc....and most of the lot I am with day in and day out are 15 - 20 years younger than me...think this makes them fear for their moms as well

    Beanius- there are a lot of different tami brands. I'd take' em back to the pharmacist and see what s/he says.

    Alicia- GOoD luck tomorrow...

    June/Jules---- where are you? everything ok?

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

    Thanks Sande... thats how I feel about it too hugs!

    Alicia...good luck tomorrow will be thinking and praying for a speedy recovery... hugs to you

    Thanks ladies I just got home again from visiting her.. she is a doll she said to me " Sit Ri Ri you no go"... love her to pieces...

    Jo... it has been very unsettled in this part of the country weather wise

    pillow fight tomorrow and happy juice yeah!!!!!!

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

    Tink does it ever end?  My gosh you have been through enough!  So young, how did she get that?

    Jules I am getting very worried, is your daughter okay?

    Hi Alicia....You guys this is one hot lady, with one hell of a gorgeous family.....I have been feeling so down lately and don't want to burden you all as you have all been so nice to me......just this whole thing with my Dad ARGH!!!!  I will however join in for the pillow fight tomorrow night and will be drinking heavily....I am hoping Tink will take me for a spin on those wings of hers....

    Sandee/Angel I talked to my Dad today and I still caved when I knew I should have stayed strong.  He picked out his casket yesterday and we talked about his services a little and I asked if there was someone he wanted to have to do his eulogy and it was a special long time friend who he said he was going to call soon to discuss.......he said he hadn't thought much about what he would like done at his service.....but he would think about it.....so hard to discuss this with him and wish I wasn't so weak as I am the youngest and my older siblings have had more direct contact on helping him plan this out. 

    Sherry I miss you and hope you are doing well.....

    I miss ya all and Jo I could really use some giggle juice as I haven't laughed in a while.....

    ECG thinking of you!

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

    June - GOod FoR YOu!!!! You are not weak my friend....nothing wrong with ears..they water the earth and the plants.....it does not hurt your dad to see you cry...he knows you and would likely be stunned if you didn't, I am guessing!...Having him tell you who he wants to do his eulogy etc. gives him some power back...good on you! This part is not suposed to be easy...but it cannot be ignored so good for you for moving through it anyhow. I am also the youngest..was the last to leave and closest to my dad...my siblings said ' do what you need to do and we will do the rest' when he passed....and what I needed to do was be busy....and plan...and cry....but I also cried the weekend before he passed when I went home to Ottawa for the weekend and I hugged him a lot and tried to have those conversations with him. Not east...keep breathing June. Sending you calm and huge hugs!

    Tink- when it rains it pours...sooooo true....but it will also stop...things will calm....and you will handle each thing as it comes along. You will.hugs to you 

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  • JustmeAlicia
    JustmeAlicia Member Posts: 1,529
    edited April 2011

    Thanks girls !

    June ~  ((((HUGS))))  so sorry about the talk you had to have with dad.  I always felt like my parents would be here forever.  I lost my dad and step dad in my early 20's one sudden, 1 cancer.  Neither one is good.  Thinking of you.

    Sandee ~ great kind words.

    Tink, Jo everyone ! Hugs ~

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