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Bottle o Tamoxifen

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  • billsgirl
    billsgirl Member Posts: 2
    edited June 2008

    Hi Ladies,

    I'm here to join the tamoxi-train. I just started this last Tuesday and I was wondering how long it took for some of you to notice any side effects. I will continue the weight fight. I gained ten on chemo and had put off exercising until my exchange surgery. Well, got the exchange last Wed and hit the gym Monday. I feel great but I'm anxious about what to expect from this new part of the journey. I will check back with you all regularly to follow everyone's progress. I'm hoping I tolerate tamoxifen as well as chem - I really did OK considering what they pumped into my body. I am just so excited to be done and looking forward to a healthy new-normal. Thanks for any newbie advice you can give!

    Robin

  • Chrisly1
    Chrisly1 Member Posts: 1
    edited June 2008

    I have been on Tamoxifen for 2 months.  It is due to my hi-risk for lobular breast cancer.  I have had 2 bouts of gastric cancer and found out my genetic mutation is estrogen receptor positive so recommended to take the Tamoxifen.  I have had devilish hot flashes...Worse than when I had my hystrectomy in 98.  But I am encouraged by the fact that if I have the hot flashes they say its working the way its supposed to....Go figure.

    Other than that I am Ok......Oh and I usually blow my hair straight and now I have  to let it go curly...Actually never was this curly.  Since I get so drenched several times a day! 

  • billsgirl
    billsgirl Member Posts: 2
    edited June 2008

    Hi Christy,

    My cancer was ILC too and ER/PR+ so we have much in common. What treatments did you go through (surgery, chemo, rad etc) Just curious...

    My hair is just starting to grow in and I'm getting very impatient. It started before my last taxotere so has been growing (ever soi slowly) since the beginning of May. How long till I can take off my wig Laughing I hope tamoxifen doesn't slow it down more!

    Simple hopt flashes through chemo (thanks to chemopause) but nothing changed since starting tamoxifen earlier this week. So far, so good!!

  • dcbkc
    dcbkc Member Posts: 137
    edited June 2008

    Well hello to all of the new comers!  As I've said in the past, you've found your way to a GREAT group of women -- not to blow my own horn but the horn of all the other riders.  They're wonderful.

    So to catch up with all of you I've actually read all of the posts, so this might take me a little while.  I'm not in a 'communicating' field like Layne but I'm originally from the DC area, so maybe that's what causes it!!

    As far as s/e's, I'm still getting some hot flushes at night, but if I keep my feet cool, the rest of me seems to follow Undecided -- go figure.  I'm getting cramps in my feet now and then, but nothing too horrible -- but I'm glad you mentioned it, Virginia, I wouldn't have put it together.  I also get cramps like I used to when I DID get my period -- I'll talk to my med onc about that when I see him next week. When I first started the tamox, I also got some vaginal discharge.  I found that if I did a vinegar/water douche, it really helped.  (Fill the bag with warm water and a capful of white vinegar). It's an old school remedy, but it's harmless even if it doesn't take care of the discharge.

    Basha,

    Good luck with your show at the hospital.  I'm sure it will be well received.  You are so talented.

    Virginia,

    Happy anniversary!  What a milestone to get to. Hope your dad is doing better and that you had a good day cooking with him.

    Layne,

    You're a hoot! And that's great news from you too!  I'm coming up on my one year in August.And yes, I've been baking.  A double-double batch of brownies, choc. chip cookies and ginger snaps. My hubby has about 12 people from work coming over for dinner in about 2 weeks and 90% of all this went into the freezer. I still have a sour cream coffee cake to make. That'll go in the freezer too!

    Lynn,

    Have a safe trip back to the US. Sounds like you got a lot done to get ready.  I'll be thinking of you and waiting to hear what the doc tells you.

    For my news, I started my part time job.  Just got my first paycheck -- not much but nice to get. If all goes well, over the next 12-18 months it should become full time.  Which will dovetail nicely with my daughter getting more independent all the time but she still needs me now - she's not driving just yet (another 2 years). My mother had to have another gamma globulin treatment this week.  If her blood platelet count doesn't stay where it's supposed to, the doc is talking about removing her spleen.  It would be laproscopically but at 80 that's still a concern. I may have to go back to DC when/if that happens.

    So hubby is not travelling this week which means I can't get to the computer very easily.  I'll try to check in with y'all when I can. To the newer riders, hang in there! We've all gone through different s/e's at different times for different lengths of time. I kept a chart for about 4 weeks, it really helped me and my med onc to track what was going on.  And I'm the one who keeps track of the number of refills I get -- which for me come quarterly -- I've got 2 marks now on the side of my pill organizer-- 18 to go or 10% down. Boy, just saying that makes me feel a little better! So have a peaceful weekend, enjoy whatever it is that you are doing and keep looking for the car that will make you happiest (dessert car for me!!!)

     xxoo,

    Deb

  • Believer0711
    Believer0711 Member Posts: 64
    edited June 2008

    Day 2 for me, so far so good. I actually completed my Pilates workout at home, which I have not been able to do in a while. I guess that's a good sign. Couple hot flashes today, and that's about it. Yey!

  • Yself
    Yself Member Posts: 12
    edited June 2008

    Has anyone heard of anyone having a stroke from using Tamoxifen?

    I've only been on it a couple of weeks and am having leg cramp. Not looking forward to this for the next five years.

  • stefie
    stefie Member Posts: 25
    edited June 2008

    Hi all    As you already know I am not having a good ride on the train.  Went to onc last week and we talked about Hyster.  I know I cannot take 5 years of this.  I am lossing hair and I want to know if anyone has had stomach problems?  I try to stay positive but every now and again I get down.   It does not help that I never feel good.  What do they put you on after hyster., post-menupause?  billsgirl  my se have come slow but sure.  Flashes are the worst!  I feel like all I do is complain because that is all I do.  bwerthele WOW you have had a time. God Bless to All

  • JapanLynn
    JapanLynn Member Posts: 211
    edited June 2008

    Good morning, ladies--

    Not a lot of time so I can't respond to each of you as I'd like...I have to leave the house in an hour to catch the bus to the airport--and so begins (cue echo sound)...The Day Without End!  It's so weird...with the time difference, I actually get to the east coast before I've left Tokyo (so to speak).  I'll be at my sister's house in about 25 hours.

    I hate leaving my kitty...this time last year when left for summer vacation, who knew I wouldn't be back for five months?  He'll be well taken care of, though...the apt./cat sitter moves in later today. 

    Sorry to hear about all the SEs, Stefie and others...hope there are some repairs done on the track to make this ride smoother for everyone. 

    Take care, friends...more later from the other side!

    Lynn

  • larousse
    larousse Member Posts: 32
    edited June 2008

    Hello tamox gals,

    Yself, I heard about stroke, the risk is small but it is there. I was told that it is higher for women that are older and already at higher risk because of medical issues. 

    Lynn, the trip sounds exhausting. I go to France every year to see my parents, 8 hrs difference is already a lot.

    No hot flashes yet after 3 weeks. I am crossing my fingers.  I am exercising a lot, that may also be a factor in preventing the hot flashes. However, pms is killer, I feel like I am 3 months pregnant, with swollen belly and all... Hope it doesn't stay that way.

  • yellowrose
    yellowrose Member Posts: 181
    edited April 2009

    Stefie,  I had a hyst/ooph on the 19th due to se's from tamoxifen.  In Sept my onc wants to start me on arimidex.  I am feeling so good now that I'm off the tamoxifen that I'm a little worried about going back on until I change over to the arimidex. 

    I am having only about 5 flashes a day now vs. the 30 that I was having on tamox.  The flashes are way less intense and shorter also.  I was having bad night sweats and now I am having only one or less mild night sweats.  My blood pressure has returned to normal.  Best of all, no more 3 month periods.

    Didn't have stomach problems but I have read that others on the train have experienced it.

  • Jisman
    Jisman Member Posts: 96
    edited June 2008

    Deb -  have your mom question the doctors about the spleen removal and it's rate of solving her platelet count issues.  My Dad has ITP and has been fighting low platelets for about 7 years now.  His research says spleen removal didn't have that high a correlation with solving the problem.

    Stefie -  if you were post-menopausal, generally you would get either Femara or Arimidex instead of Tamoxifen.

  • stefie
    stefie Member Posts: 25
    edited June 2008

    Yellowrose   I know whereyou are coming from.  The whole thing is scaring me.  What if the arimdex is a bad ride also???   Yesterday though I had hot flashes upon hot flashes.  Then chills a few times from all the wetness. I am going to FL next month to visit my uncle who has a pool and I am going to stay in it for three weeks.  Maybe I can feel clean and refreshed for a little time.  I am sure that I will not want to come home to face all of this mess.  I have to have my gallbladder removed and have a carterat {from tamox} that is getting worse.  But you know it can always be worse!!

    stef

  • ashaby
    ashaby Member Posts: 200
    edited July 2008

    Hi Everyone,

    Survived 2 weeks with my husband away and my son decided to go back to college!! So we've been scurrying with application, transcripts, etc. He'll be local but boarding so maybe life does begin at 57!!

    So I have 3 art shows, "My Cancer Story", scheduled; July, Oct., Jan. So excited. Wish you could all come. They are all at hospitals, or health facilities.

    Having some memory problems on Tamox. Anyone else? Can't remember if you said. (HEEHEE)

    Basha 

  • Barbie7
    Barbie7 Member Posts: 126
    edited July 2008

    Hi Fellow Riders. 

    Lots of posts to catch up on!  I've now had three accupuncture sessions with no relief at all.  I'm a very open person who believes in the power of Eastern medicine, but zilch, nada, bupkus.  This has been a little distressing.

    So, here's my new plan: I had a lumbar spine X-Ray to rule out a medical problem with my low back (haven't heard results yet).  If there is no visible medical problem, I will forward the X-Rays to a chiropractor who can evaluate for a mechanical problem.  I feel as if this will narrow my path a bit to try to find relief for the low back pain.

    Accupuncture did not work for the nausea, pelvic pain or fatigue - although I think I'm learning to live with it.  Some days, I'm living with it better than others.  Some days I just downright moan and groan.  Blah. Blah. Blah.

    Oh, and accupuncture did not lessen the shoe-buying side effect of Tamox. I bought ANOTHER pair of shoes!  They are adorable, and I love them, and i deserve them...I'm getting compliments from men too! 

    Happy Aniversaries to all that are celebrating soon. 

    Memory problems?  for sure - they are worse when I'm tired or stressed.  I used to have an awesome memory.

    Barbie

  • Christianne
    Christianne Member Posts: 9
    edited July 2008

    I have definitely noticed memory problems.  For awhile I attributed it to post-surgery anethesia recovery, but now I'm wondering if it's the Tamox.  Or could it be age, who knows.  But it is definitely worse the past few months.

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

    Hi again...  Here is a new development.  I am having this neck and shoulder pain, and I wonder if it is from the Tamoxifen.  I haven't mentioned it to my dh, because I know what he'll say.  He will say that it's from being at this computer too much!!  lol   But I have been staying away more, so I don't know what is going on.

    Also, last night when I was trying to sleep, I noticed some pain that felt like 'ovary' pains, or lower back pain, that I used to get at that time of the month.  But, since I am not having that any more, I wonder if maybe these old ovaries are just sputtering.  YICK!

    Anyone have any of these se's?

    Harley 

    P.S.  Basha, congrats on the art show!  Barb, way to go on getting more shoes!! 

  • Susie2
    Susie2 Member Posts: 5
    edited July 2008

    Hi all...catching up on all the posts since returning from my first real vacation since dx in 10/07.  Had a great time in the Finger Lakes of NY doing the winery tours and hiking into some awesome waterfalls.  The se's of the tamox were not enough to keep me down but at times I did feel awful.  So here goes on some questions and comments...Harley..I have been having some really bad pains in my back and shoulders and its on the side I had my radiation on...since I had my nodes blasted I wonder if it did some damage to nerves??  or..could be something that Stefi is experiencing since it seems to be tied in to my stomach problems too.   Had slight gallbladder problems before but since I started the tamox I am nauseous alot and some foods just kill me ..it almost seems that when I started the tamox all the little problems and aches and pains have become amplified.  Larousse & harley..that goes for the ovary thing and the bloating and pms too...ugh.  So far its not enough for me to stop taking it but I hope and pray it doesnt get any worse!!  Hmmm..off to buy some shoes I guess!

    Sue

  • Cadreaming
    Cadreaming Member Posts: 4
    edited July 2008

    Hello everyone,

     I'm going to be put on Tamoxifen. I see my Oncologist this Wednesday July 2. Are there any questions I should ask him regarding tamoxifen? Looking back, can you think of any questions you wished you asked before starting tamoxifen? I'm 42 years old if that matters at all.

    Thanks!!!

  • larousse
    larousse Member Posts: 32
    edited July 2008

    Cadreaming, you may want to read up on the possible side effects before going in, you will have more ammunition for your discussion. I was told that mid 40s (in my case) was a good age for taking tamox. Usually in your 40s you don't have to worry too much about the more dangerous se, blood clots and uterine cancer. But read up on the stats, the dangers aren't as big as the % for BC recurrence for most of us.

    I would write down your statistics, one tend to forget, especially after taking the tamox...;)

    About the memory, for me it is more like a shorter attention span, scattered brain kind of thing but it has only be 3 weeks for me. My oncologist told me that the sharp drop in hormones causes that in menopausal women, and for men the drop is more gradual.

    Basha, congrats, I envy you, I used to paint, now I am a graphic designer since the income is more reliable.

  • Joyce-PA
    Joyce-PA Member Posts: 53
    edited July 2008

    I started Tamoxifen January 2008.  My side effecs are wicked hot flashes night sweats,  insomnia and a little bit of back pain.  I am 56 and prior to tamoxifen I was still getting my mens so it could also be menopausal symptoms. 

  • murphmort
    murphmort Member Posts: 76
    edited July 2008

    Good morning, everyone!   Interesting reading on the various side effects.  I have taken 16 pills to date, and I have been experiencing hot flashes.  They started about a week into it.  I do take the pill right before I go to bed and have found that I am waking up - I usually get up and turn the ceiling fan on.  We have central air, so the temperature is very comfortable for sleeping, and turning the ceiling fan on does help me get back to sleep.  This has not happened every night.  Good idea to start writing down into a journal.  I see the med onc on 7/7.

    I am not tracking my tamoxifen as I did radiation - way too depressing!  I'll be counting down the bottles!!!

    It seems that if I have a beer or two the hot flash seems more pronounced?!  Last Friday night and Saturday night, I had 2 beers on each evening.  Not sure if there is a correlation as I have not had a beer since. I have had flashes since, but not as pronounced. 

    No other side effects to date.  I do walk everyday for 2 3/4 miles and have found no pains or aches.  So that is good news. 

    I start back to work on 7/14; I'm hopeful that my brain can handle it!   I'm redoing my son's room right now, so that is keeping me busy. 

    Looking forward to several cookouts this weekend.  I'll see lots of people that I haven't seen in a while.  We are also going to a pig roast, which we have never been to!!!  We won't stay long, as my son has baseball, but it should be fun!!

    I feel like my life is getting back to the way it was and not so focused on my doctors appts., treatments, etc.  It feels good.   My 81 year old dad is coming up from FL to visit next week.  My 47th birthday and my son's 15th birthday are both next week, so we'll be celebrating big time!  

    Have a great day!

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited July 2008

    Hi Girlies-

    Well, I took my first diuretic this AM...  I put a watch on this AM that used to be loose, and now it's not...so I'm trying the diuretic.  Not sure if the bloating is from the Tamox or the Herceptin.  Finish the Herceptin in a couple of weeks, so we'll see.

    Have had an AWFUL pain in my neck and back...  Not sure if it's from riding the roller coasters at Hershey are few weeks ago or too much Guitar Hero.  My mind always goes to the "dark" place b/c my mom's BC metastacized to bone cancer in her neck.  Had a major melt down over the weekend and my brother was very good and rubbed my back.  Anyhow, short story long, when I had my Herceptin treatment on Friday, my chemo nurse made me PROMISE NOT to play Guitar Hero until I saw my onc on 7/8 to see if the pain went away...  I'm going through withdrawl.

    Hope everyone has a safe and wonderful holiday weekend!!

    Virginia

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

    Virginia

    Have a wonderful holiday also!  Hope that bloating goes away!  Congrats on finishing Herceptin very soon!! 

    Hugs

    Harley

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited July 2008

    Thanks Harley!!  :O  I saw that you mentioned your back and neck were hurting too...  I'm hoping this is not a Tamox SE...  Who knows....

    I think the water pill might be kicking in...  :O 

    V

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

    I am hoping that the neck and shoulder pain are from the Tamox., because I don't want to worry about what else it might be...  I had to switch my onc appt., because I have jury duty, so I am now going on next Friday to see my onc.'s P.A.  (I thought she was his nurse), so I'll ask about all these issues when I go back in to see her. 

    Oh, no!!  Laughing 

    good luck with the water pill!

  • dcbkc
    dcbkc Member Posts: 137
    edited July 2008

    Virginia,

    Hope there's nothin' to the neck pain.  Glad that your brother stepped up and rubbed your neck. I'm not getting neck pain but I've had a lot more dizziness lately.  Hubby wants me to see my pcp but I have a med onc appt next Thurs (7/10) so i'm trying to get to that.  So hang in there with me. 

    You too, Harley. The way I figure it, we're more than 10% through the tamox.  That's real progress. You guys can't jump off the train.

    Basha,

    You rock.  I wish I could see your show.  Knock 'em over! And yes, my short term memory isn't what it used to be.

    I have blood work tomorrow and CT on Monday.  First time that I'm having one with contrast -- this is to monitor a spot on my lung that was found during the rad set-up.  Very scary.

    Have a wonderful Fourth everybody. We have a barbecue car, don't we?

    Deb

  • Munchy
    Munchy Member Posts: 59
    edited July 2008

     
    Went and saw my onc yesterday.  Had a bone scan today in prep for the inevitable osteoporosis I will get from the Tamoxifen.  Left the place with two bottles of Tamox in hand.  So scary listening to the list of terrible side effects.  On top of that are the less scary, but no less palatable SEs - the hot flashes, weight gain, etc (argh).  Worst of all I can see myself starting down a slippery slope with the meds.  My onc was talking about how when he sees me in a month, we can talk about any SEs I'm having and that there are medications to counteract them.  Of course, those meds will have side effects too!  I've always been so healthy and hate the thought of becoming one of those sickly people who have a bathroom full of meds they have to take each day.
     
    Side note... did anyone know that you start losing height after age 40?  I didn't think you started shrinking until you were about 80 or so!!  They measured my height today when I went for the bone scan, and I've already lost 3/4"!!!  I'm only 49.  I can't afford to lose any height since I'm only 4'10" - (well not anymore).
     
    We are going up to our cabin in Pinecrest for the 4th - just my husband and I, as my son is on a cross-country road trip and my daughter leaves that day for Mexico with a friend.  (sigh)  My nest is beginning to empty.  Have a great holiday, ladies, and thank you for listening to me whine.
  • Believer0711
    Believer0711 Member Posts: 64
    edited July 2008

    Munchy, I'm tiny like you :-> I'm almost 5 ft, but after the surgery I felt like I shrank a little. And you're saying we start losing height after 40. Oh no. How short will we be at 70? Undecided

    I thought Tamox helps strengthen our bones? Well, that's what my onc says. I quit Arimidex and Aromasin because those pills cause bone loss and eventually osteoporosis. Is it true that Tamox causes osteoporosis also? Arrghh!!!  

    I'm day 6 on Tamox, and it has been so-so. Zits are just making a grand appearance lately! Stiff fingers and neck, worst in the morning and gets better through the day. 2-3 hot flashes a day, but not at night. I work out at night, take a warm shower, take 1 melatonin and 1 tylenol pm at bedtime, and that knocks me out. I've noticed that routine has allowed me to sleep better. I miss my sleep so much :-<

    Well, my friends, you all have a good night and a safe holiday weekend!!! God bless America!!!

    Aurora

  • ashaby
    ashaby Member Posts: 200
    edited July 2008

    Darlings,

    Tamox does strengthen bones. It's the AI's that contribute to bone loss. Munchy, I have very few SE's after 7 months. Take heart!

    Deb, Oh honey, thinking of you for the lung scan. Let us know. And thanks for the art support. It's my quest!!  Love, Basha 

  • mreilley99
    mreilley99 Member Posts: 1
    edited July 2008

    hi all....i have been on tamox for a year and 1 month...my last period was during chemo...i wasnt in meno pause but possibly perimenopause. my question is ..have any of you had any spotting or break thru bleeding while on tamox? i was having symptoms of a period ..low back ache, cramps, then minor spotting. i am curious as to what it could be? any thoughts?

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