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Bottle o Tamoxifen

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Comments

  • dcbkc
    dcbkc Member Posts: 137
    edited January 2008

    Hey gang!

    Virginia -- glad the cruise was good!  Hope your dad is doing better.

    Wishiwere -- I've been on this train for almost 2 months.  I'm still getting my period -- I even got it early by 4 days last week!!  Doesn't being stressed make you late?!?! Anyway, no hot flashes, my weight is totally dependent on how I'm eating.  Too much dessert (I remember the spelling because you always want 2!) and it goes up. If I behave, it goes down.  I do get some discharge, like Cheryl said, but I thought it might be yeast infections.  But then I got my period!! The joint pain is a bit bothersome.  Mostly my ankles and knees.

    I have 3 weeks until my first follow up mammo.  Any suggestions how to not freak out in the meantime?

    Hope everyone is doing well. You all give me strength.

    D

  • wishiwere
    wishiwere Member Posts: 934
    edited January 2008

    D, the time to worry or freak is IF there is something to worry about.  Keep in mind how you've been beating this thing and will continue to do so! You'll get that good report!  Look at all the good reports the women are reporting!  You'll be one soon!

    I've only had 2 since last may, early june (can't remember now).  I think the 2 I had were stress related. One the day of my first mammo (sept 21) and the other was Dec 5th, the day of my first chemo.  Stress makes me have one easier.  But none in teh meantimes and I'm one that goes every 18-21 days normally, with 7-9 days ave lenghth.  I'm so looking forward to losing them!

  • dcbkc
    dcbkc Member Posts: 137
    edited January 2008

    Wish --

    Thanks for the good thoughts. 

    I was always like a clock - 28 days. Even my husband was in tune with my cycle! And up to now, stress made me late.  It seems like my whole system is whacked out! And heavy too. What a drag!!!! But still only 4 days thankfully.

    At least we also have a trip planned -- spring break for our daughter (8th grade).  We're going out to Palm Springs.  It's been so cold here, I'm really looking forward to that.  My husband has told me that we are going to our favorite French restaurant.  The BEST souffles -- they make raspberry just for us.  My hope is that this will be a celebration dinner.

    In the meantime, I stay on the train and try to keep positive thoughts.

    D

  • wishiwere
    wishiwere Member Posts: 934
    edited January 2008

    See there!  You'll have a celebration vacation all set to go!  Very good idea!

  • dcbkc
    dcbkc Member Posts: 137
    edited January 2008

    I wish I could take credit for the idea -- just the school calendar.

    In the meantime, we'll get you through chemo and onto the train. The best part of having friends is the idea that we hold on to one another.

  • wishiwere
    wishiwere Member Posts: 934
    edited January 2008

    Yep, and share the cyber {{hugs}} when they are needed and even when they aren't! :D

  • dawnjs5k
    dawnjs5k Member Posts: 4
    edited January 2008

    I wish I could give you that advice.  I had mine on the 14th.  I knew that it was not normal when I left.  I had to have an ultrasound also.  The really hard thing was getting a letter in the mail telling me that my mammo was abnormal.  I was trying not to think about it.  I saw the dr. last week and he was not worried about it at all.  He said that it just looks like fluid and a very small amount that is inside of breast tissue.  It was in a surgery area and where I got the rads.  We are going to follow up in 3 months with another ultrasound and see if there is any change.  I know that it is still tender and I asked him if that could be why.  He said it might be, but then again I could just be tender from the rads. 

    Stay strong and know that we are all here for you!!

    Dawn

  • dcbkc
    dcbkc Member Posts: 137
    edited January 2008

    Dawn,

    I'm so glad to hear that I'm not the only one who continues to be sore.  I thought that it was just me.  I'm sure there is still fluid there -- and that gets worse with my period, water retention you know! That's what freaks me out the most -- knowing that I'm still sore and having to have the mammo!  I figure if I'm still sore then, I'll take the pain meds that I still have and my husband will do the driving. I'll have it in my system so hopefully I can minimize the discomfort. 

    Thanks for letting me know that this may be a normal thing.

    D

  • ashaby
    ashaby Member Posts: 200
    edited January 2008

    Virginia,

    Thanks for your good wishes! Boy, you got a lot on your plate. No wonder your memory's shot; your dad's illness, your recovery, a so so cruise. I say draw a hot bath, bring a good book(a mystery??), and of course a little chocolate to debrief from your life.



    Love, Basha

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited January 2008

    Thank you Basha...I am reaching my breaking point.  I swear sometimes that it's easier to be the patient than watch someone you love be sick and suffer...  Like, I was ok when I was going through treatment while my sis was a wreck...

    Yep, bath and good book does sound good.  The chocolate part...well, I've got you covered on that one!!  :)  Got a stash of dark chocolate from the family for Xmas...

    Janet Evanovich...very "lite" mystery...have you ever read her?  Funny silly books that take just a couple of evenings to read...

    Thanks again for the kind words...

    V

  • my3girls
    my3girls Member Posts: 1,291
    edited January 2008

    Hello Tamox friends!

    Virginia..welcome back!  Glad you had a nice cruise.  So sorry about your father, that has to be very hard on you.

    I am proud of you...not forgetting in 30 days!! I guess that little pill box helped..haha.

    Dcb...So you got your period after 2 months on tamox?  I have not had one since last April, it stopped during chemo.  I am on month 3 for tamox, and no period yet.  I am hoping it never returns!

    I have the same joint pain as you. Primarily in my knees and ankles. Sometimes my elbows too.

    Well ladies..I will be checking in with you this week, then after Sunday...it will be awhile before I am able to sit at my PC.  I am having my reconstruction (tram flap) on Monday Feb. 4th!! I am excited...but very nervous.  Please say a little prayer for me. Thanks!!

    xoxo

    Lisa

  • dcbkc
    dcbkc Member Posts: 137
    edited January 2008

    Lisa,

    I'll be thinking of you and keeping my fingers crossed.

    That pill box was the best thing I could do to remember.  I haven't forgotten once in 2 months.  I also see it as a countdown.  Even though I have 4 years and 10 months to go, each week, each day, I can see that it is bringing the count DOWN! A little boost! A little victory each day. Making me closer to finishing.

    D

  • Blinx
    Blinx Member Posts: 82
    edited January 2008

    Wishi -- I'll be boarding this train soon... filled my prescription and decided to start on Feb. 1st.

    But, before my onc would give me the go ahead, she insisted that I get a gyn exam  -- I was way (years) overdue for one, and my problem was the absence of a period (only a few a year). And she was right to insist. I ended up having an endo biopsy, and now I'm waiting for the ultrasound results. My gyn said that if everything checks out ok, I'd only need to see him once a year.

    You have the right to be comfortable with whoever does your exam -- my onc did not know what the endo biopsy results meant -- that's my gyn's area of expertise (it was benign but showed some other possible problems).

    Also insist on a blood test to determine where your hormones are  - I didn't know if I was in menopause either (for some strange reason, I like not bleeding once a month, but I knew it wasn't normal). My onc did the blood test.

    Also, with my insurance, I don't need a referral to see an ob/gyn for a regular exam. See if yours is the same. Good luck!

  • Kara
    Kara Member Posts: 17
    edited January 2008

    Lisa,  I had tram flap reconstruction at the same time as my mastectomy in June 07.  I still have finishing touches to finish up this year (nipples, tattoo).  I'll be thinking of you on Feb 4th and sending you good wishes and prayers.

  • my3girls
    my3girls Member Posts: 1,291
    edited January 2008

    Thanks Kara.  I hope that all went well for you!  I will be glad when it's all done!  When are you having the nipples and tatto's done?  Did you have to have tx's too?

  • barbeqrn
    barbeqrn Member Posts: 38
    edited January 2008

    Harley! How are you???? I miss talking with you every day, finished Rads and feel pretty good. \



    Cynthia, I used to be a Nurse Practitioner in cardiology and if you need any interpretation, let me know. I am in pulmonary medicine now.....



    What is the protocol for GYN visits while on Tamox?



    Everyone take care. Barb

  • Kara
    Kara Member Posts: 17
    edited January 2008

    Lisa,  Yes, everything went well.  If you have any questions, just ask.  I'd be happy to help you if I can.

    You may want to get some pillow wedges.  I wasn't able to lay flat on my back for a few weeks.  I had to use two pillow wedges under my back and pillows under my knees.  The first few nights I slept on the couch so I could be more upright.

    I have to call next month to find out about getting the nipples and tattoos done.  They wanted me to wait 2 months after finishing chemo.  I'm not in a hurry.

    I finished up Chemo on Dec 3rd (Taxotere & Cytoxan).  My hair is starting to come in slowly.

  • my3girls
    my3girls Member Posts: 1,291
    edited January 2008
     

    Thanks Kara....I have my pillows ready.  I will see if I need it, but I may rent an electric recliner for sleeping.

    Glad to hear you are finished up with your tx's!  I had 4 tx's of cytoxan, and adriomycin, then 4 tx of taxotere.  So I know what you went through.

    I finished up at the end of August..and the hair started  coming in!! It is almost 2 inches long!  I quit wearing my wig in early December!! That was a great feeling. Good luck on the hair growth...it will be here before you know it!

     
  • Cynthia1962
    Cynthia1962 Member Posts: 236
    edited January 2008

    Thanks, Barb!  I survived my treadmill test, but it gave me quite a workout.  My hips and lower back haven't been the same since.  I think the Neupogen did a major number on that area of my body.  I made it until just before the end of the test before having palpitations, but I don't know what that means. lol  I'm now wearing the event monitor which is a pita, but hopefully it'll help my cardiologist figure out from which part of my heart the palpitations are coming from. 

    To answer your question about GYN visits - it seems to vary.  My GYN will give me a baseline u/s during my annual in March, then I won't have another unless there's unexplained bleeding or pain.  I think I'll still see him on a yearly schedule. 

    My onc plans to check my hormone levels at my next visit, I guess to see if I might be in menopause yet.  I'll be very surprised if I am.

    Take care,

    Cynthia 

  • Harley44
    Harley44 Member Posts: 2,126
    edited January 2008

    Barb,

    Hi there!  I miss our talks too!  Glad to hear that you've finished your rads!  Welcome to the Tamoxifen train!! 

    I am going to see my pcp next week for my gyn exam, and I'll ask her if she will get me a referral for an annual vaginal u/s.  I have uterine fibroids, and they are being monitored.  Since I know that Tamoxifen makes them grow, I'll be asking for regular checks... 

    Email me anytime, if you wish...  I miss hearing from you!

    Harley

  • Cyndy
    Cyndy Member Posts: 2
    edited January 2008

    How much weight have you all gained on Tamoxifen? What should I expect? I have gone through menopause, so will my periods start again? I don't have cancer, I have Stage 0 Pre cancer and am having a mastectomy. If they put me on Tamoxifen will I still be able to color my hair?I hear you all talking about hair thinning.

  • louishenry
    louishenry Member Posts: 22
    edited January 2008

    Cyndy... I also had DCIS, stage 0, and am on tamoxifen. I have had no se's other than irregular cycles (I'm 45 and pre-men). No weight gain, hot flashes etc. At least not yet. You may not have any problems either. Every one is different. Also, I still color my hair and have had no thinning. Good Luck, Nada.

  • Kara
    Kara Member Posts: 17
    edited January 2008

    Lisa, The electric recliner sounds like a great idea. I wish I'd had something like that.  It would have made some things much easier.

  • my3girls
    my3girls Member Posts: 1,291
    edited January 2008

    Cyndy..I have not had hair loss with tamox, and I have colored.  But as everyone has said, everyone is different.  I have not had a problem gaining weight either.

    Cynthia..glad to hear you survived your treadmill test. I hope they figure out soon, why you have had the heart palp's.

    Kara, I think the chair is a good suggestion. I will wait and see how I do with pillows and my bed.  If I don't have to put the money out for a rental chair...I won't.  But...if I can't get comfy at all...then I will bite the bullet and spend the money.

  • dcbkc
    dcbkc Member Posts: 137
    edited January 2008

    Cyndy,

    I'm 48 and still getting my period even after being on tamox for 2 months now.  My diag. was the same as yours -- I had lumpectomy then rads now tamox. for 5 years. My weight has stayed steady -- as long as I eat well and no soda!  No hot flashes.  Some joint pain. No hair thinning. So  I'll just get on this other train -- everyone is unique.  You'll know when something is different. Trust your instincts.

    Cynthia,

    Now that the test is over, catch your breath.  Glad you made it through.

    I'm starting to get my questions together for my surgeon, so all these comments about monitoring for uterine issues is really helpful.  Not sure if he's the one to ask, but I'll do it anyway!!!  LOL

    D

  • labhusky
    labhusky Member Posts: 10
    edited January 2008

    Ladies, its official now, I actually jumped on the train this morning at 10:00 west coast time.  Scared to death?  Yes.  I got to thinking about the people I know that tell me that their mom or aunt or friend took it and is just fine so here I go....  Im in the chocolate car..

  • ashaby
    ashaby Member Posts: 200
    edited January 2008

    Welcome labhusky,

    I'll be there in 5.

    Basha

  • Harley44
    Harley44 Member Posts: 2,126
    edited January 2008

    labhusky,

    Welcome! Sounds like you got a good seat... the chocolate car!  I am in the bar car... drinking one of my favorites...a melon ball!

    Harley

  • OneBadBoob
    OneBadBoob Member Posts: 63
    edited January 2008

    Hi ladies--

    Just jumping in to say hello--on my way to the Starbucks Car. . .

    6 days on the train for me--no problems until yesterday--nausea!  I was so disappointed, but I am hoping it is temporary and will go away when the body adjusts to the Tamox.  I do feel a whole lot more tired today than I have for a while--could these be bumps on this train?

    Or maybe I am finally exhaling after getting the clear results on the PET/CT scan last week and that is why I am tired?

    Oy, always  something. . .

    Lisa, you will do great!   We are all here to cheer you on.

    By the way, is anyone having the CYP2D6, or whatever it is called, test done while on the Tamox?

  • wackyjackie
    wackyjackie Member Posts: 107
    edited January 2008

    Hi Girls,

    Welcome Labhusky....I started 10 days ago and the first few nights I was in a panic.   I don't know why.  I don't panic.  BUT...I'm still here and doing okay(LOL!!)

    Just want to know, does anyone experience tingling across their chest on tamox?  I just finished rads last Friday. I don't know if my skin feels tight because of the burning from the rads or if its from tamox.  I get it every once in a while.  Please let me know.

    Thanks...

    Lots of hugs, Jackie

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