Bringing in 2014 with Tamoxifen!

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Kruise
Kruise Member Posts: 330

A new year is nearly upon us - and I have just taken my first tamoxifen tablet. I'm not sure how I will go on this drug and even more unsure why my oncologist wants me to take it having a slightly PR+ tumour only - but on his advice, the fact that I'm well and truly over chemo and rads and need to know I have tried everything I can - I'm beginning on this part of the journey. I am also looking at stepping up the exercise and eating carefully and well for 2014. 

So if you too are also just beginning on the Tamox journey in 2014 - join in too and let's support each other. 

Ready, set, GO!!!!!! xxooxxx

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Comments

  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited December 2013

    Kruise - I'll join you.  I just swallowed my first on December 13, after a bad,bad run on Femara and Arimidex.  Hoping Tamoxifen is the one for me - sick of side effects.  So far so good!  (Fingers crossed!)

  • Monis
    Monis Member Posts: 472
    edited December 2013

    Bayou babe, Just started the day before you!  I didn't think I was having any side effects yet, but for the past couple of days I've been a bit dizzy with a headache and cough.  Hopefully just some "bug" I picked up somewhere and not what I have to look forward to as long term SE's.

  • Sandymomto3
    Sandymomto3 Member Posts: 37
    edited December 2013

    Dropped my prescription off this morning to be filled.   Nothing says Happy New Year like some Tamoxifen.  

  • Kruise
    Kruise Member Posts: 330
    edited December 2013

    happy new year bayouBabe, Monis and Sandymomto3!! Welcome! I've had 2 pills now - and I've set my phone to remind me at 3pm each day as it said take with food and I figured at least by 3pm there will always inevitably be food in my stomach. Lol.

    I have felt some aches in my legs and had a headache but probably too early to blame Tamox. 

    Here's hoping it's kind to all of us.xx

  • audrey120
    audrey120 Member Posts: 3
    edited January 2014

    I just started Tamoxifen on Dec. 1 after a bilateral mastectomy Oct. 15. I had a recurrence - I was originally diagnosed in 2008 and took Tamox for a short time (about 3 months) but had too many side effects to continue. Hoping this time is more manageable! So far, so good.  

  • lindacam
    lindacam Member Posts: 161
    edited January 2014

    I started Tamoxifen yesterday and so far all ok.

  • Kruise
    Kruise Member Posts: 330
    edited January 2014

    hi Audrey and Lindacam - 

    Audrey what sort of side effects did you suffer from last time when you only managed 3 months? 

    I have had the odd headache and some joint aches and pains but nothing too noticeable yet.  Still very early days though.

  • lindacam
    lindacam Member Posts: 161
    edited January 2014

    Only nausea at this time.

  • Sandymomto3
    Sandymomto3 Member Posts: 37
    edited January 2014

    Linda..are you taking yours in the morning or evening?   I was a little concerned about nausea and so I've been taking mine in the evening.  Today will be dose 3... Wondered how long it takes to get into our systems and cause any SE.  More importantly, how long it takes to be able to work.  

  • lindacam
    lindacam Member Posts: 161
    edited January 2014

    Hi.  I take in am as some people said they have a hard time sleeping when they take at night.  I am having hot flashes still due to chemo.

  • DawnMik
    DawnMik Member Posts: 21
    edited January 2014

    Hello all

    I will gladly join you.  Started on tamoxinfin December 20th- merry christmas to me lol.   I was experiencing hot flashes before my dx.  Chemo sent me into menapause - this med has started the hot flashes again full force.  I wake up two or three times a night.   I am also taking numerous meds for the peripheral neuropathy which was caused by the taxol/chemotherapy.   Hoping there are no more side effects.  Glad to have some new friends to take this journey with!

  • KatiAK
    KatiAK Member Posts: 138
    edited January 2014

    This sounds like the group for me to join.  I started Tamoxifen on Dec 18. I'm still struggling to discern between continuing chemo/rad side effects and actual Tamoxifen side effects. I've had thoracic back pain since about halfway through rads.  I've had hot flashes since Taxol but they've definitely become much worse.  I notice if I get over tired I get depressed and I've noticed some joint pain and neuropathy.  I had my blood drawn on Friday and my white blood cell count was down.  I guess that can be a side effect but of course it sends me straight into that "what's wrong with me now??" Funk.

    Because it's a new year I'm hoping to start on a positive note with nutrition and exercise.  I got a fancy new blender for Christmas (smoothies). I'm hoping this group will share ideas and encouragement. I especially want to know about nutrition. And exercise has always helped me keep my pain levels down and helped with sleep issues.

    Thanks for starting this group!

  • Kruise
    Kruise Member Posts: 330
    edited January 2014

    hi again everyone - welcome Dawnmik and KatiAK also - great to see you here.

    Dawn had to laugh at your comment 'Merry Christmas to me' - lol - isn't this just what we always wanted for Christmas!!

    Like you chemo sent me into menopause also - but doctors still tell me that my body could start up again - but I seriously doubt it. And yes tamoxifen is bringing on the hot flushes again which I thought had eased off a little. 

    KatiAK - like you I had lumpectomy, chemo then rads. Also got back and neck pain badly last week of rads and only got better a couple weeks ago. I think we don't realise how much all that stuff affects our bodies. I felt like the radiation was definitely trying to clear from my body and looking for a way out! Have you started taking any iodine drops at all to try and help? 

    Well over one week down now and yes hot flashes, aches, plus I do think I'm more irritable (grumpy/snappy) - anyone else feel like this? Plus I am eating too much - and like you KatiAK I want to concentrate on better diet and exercise. I seem to have weeks when I'm good and then weeks when I'm not so good. I just need to get my full motivation back. 

    I'm not one to wallow in self pity - but I look in the mirror and I just want to look nice again - like I did this time last year - I don't have the hair or body I once had and how do I get this sluggish body back into shape!! Moan over :-)

  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited January 2014

    Hello ladies, Just wanted to send a few words of encouragement to you all. I am a Stage IV gal, and am taking Tamoxifen for treatment, not as a preventive. I started it in July, after seeing progression on Faslodex. My scans in December show my tumors are shrinking and they are not as active (SUV values are lower, if that means anything to anyone reading). I'm so happy. The side effects were pretty tough the first couple of months. But they did get better, unlike other medicine I have taken. I am very sensitive to medication, and on Tamoxifen, my body feels like it did when I took an aromatase inhibitor. My body is still making estrogen, but it doesn't feel like it. Our bodies thrive on estrogen, unfortunately it feeds cancer tumors, too! So when we take medicine that affects the estrogen, we are going to feel it all over, unfortunately. My hair is thinning, my fatigue level is high, and I can't sleep without wearing long pajamas, or else my night sweats will wake me up and the sheets will be soaked. But I feel a lot better than I did on Aromasin. I've lost 30 pounds since my diagnosis. My need for pain medicine has decreased, as the tumors have reduced in size. My joints don't hurt, as they did while on Aromasin. I can actually run a mile or two, and I am alive here, today, and able to hug my husband and my 15-year-old son, tell them I love them, and thank God for another day. One day at a time, ladies. I'm hoping that all of you have good results with Tamoxifen, and that it gives you a minimum amount of side effects. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014

    That's great, Michelle.  You might look into a low dose of effexor for the hot flashes. It's the only SSRI proven to work for that SE, and isn't contra-indicated with tamox.

    Good to hear you are doing so well!

  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited January 2014

    Thank you so much Michelle!  All of the encouragement from some of the stage IV ladies has kept me going.  This is my third try (see stats below).  So far tamoxifen has been fairly kind and I am hoping it stays that way.  I was almost ready to stop the meds altogether.  Those of you still on the fence - try, try, and try again.  I so want this to work for me.  My kids and hubby are also what keep forging ahead.  Best wishes and hugs Michelle!

  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited January 2014

    Thanks y'all. 

    BayouBabe, family keeps us strong when there's no strength left, truly. 

    Claireinaz, thanks for the tip, I got a scrip for effexor from the doc and mulled it over but decided not to take it. For one thing, I was having so many dang side effects I was trying to figure out what was causing what and I didn't want to add to the side effects. Then, I've taken effexor before for depression and it didn't sit too well with me, made me anxious. The hot flashes I have now aren't nearly as bad as the ones I had with Lupron shots and Aromasin. It was merciless, hot and cold flashes. As an aside, I had to stop taking Wellbutrin for depression, because it did not react well with the Tamoxifen. And Tamoxifen affects my vision, too. If I take a couple days off from Tamoxifen, I don't need my reading glasses. Strange, huh? As long as the scans show regression, I'm going to stick with Tamoxifen. I'm grateful that it's working for me now. It's hard sometimes to look past the side effects, but I'm here to tell you it does stop cancer tumors from growing. And more drugs to help us are on the way. 

  • Sandymomto3
    Sandymomto3 Member Posts: 37
    edited January 2014

    Michelle...being new to this, relatively speaking your post here is inspiring.  I see you live in NC...I do also.  I'm originally from CT, but have lived here for 20+ years.   I am thankful for ladies like you that are willing to share positive stories about treatments and give hope to others so new and unsure where this journey maybe going.  

    Day 6 on Tamoxifen for me...so far so good.   Few hot flashes but not unbearable.  Little fatigue but still getting over rads also could be a factor with that. 

  • anmore
    anmore Member Posts: 15
    edited January 2014

    Hello everyone - thank you for sharing your information and feelings and experiences. It truly helps and is so appreciated!  I had my first visit with the oncologist today and left the office with my prescription for Tamoxifen.  I have a week to decide whether I want chemo (my Oncotype is 20 so it's in the grey area and my decision and I have no clue what to do), and if not, I have to start the Tamoxifen. The hot flashes are my concern and also the fatigue. The doctor said she would expect me to have them within a month but it sounds like I'm in for a treat sooner than that! 

  • hockeymommy
    hockeymommy Member Posts: 77
    edited January 2014

    hi ladies,

    I too would like to join the group. I started tamoxifen on Dec 20, so far so good. Side effects have been fairly minimal. The hot flashes are crazy though! Thank you for starting this group!!

  • DawnMik
    DawnMik Member Posts: 21
    edited January 2014

    Well its week three- extremely fatigued, hot flashes will not give in and yes Kruise I must admit I do seem to be snapping at people without warning.   Just another hurdle to overcome huh......and so the journey continues.

  • wyo
    wyo Member Posts: 541
    edited January 2014

    HI all

    Started my Tamoxifen journey December 6th- I really appreciate Michelle's perspective here- I don't care if I have every side-effect identified by the manufacturer if the one thing I don't experience is recurrence of breast cancer.. 

    I was nauseous the first week and do get that way sometimes but not regularly.  No real hot flashes and I kind of wish I would have them so I knew the estrogen was being blocked out haha. I take it at night but don't always fall asleep easily (true before I started the med). I have lost weight and am being very careful about appetite and portion control but most days I am not really overly hungry.

    I have headaches, fatigue etc from time to time but I had headaches and fatigue before I knew I had breast cancer.  

    I know I can do this for 5 year or 10 years whatever it takes to keep cancer at bay in my body

  • LisaSp
    LisaSp Member Posts: 253
    edited January 2014

    Hello all! I recognize a few of you from other topics, so hi hockeymommy, wyo, lindacam!

    Started tamoxifen on Dec. 28, and I also had a lumpectomy, chemo and rads. So far I don't have SEs I can pin on the drug. I went into chemopause and began hot flashes then but they've improved. The fatigue I had from rads is much better. The hair I lost from chemo seems to be steadily returning.

    I think one reason the hot flashes are better are because of my antidepressant, Pristiq. It is an improved version of Effexor, and is supposed to have fewer SEs and still help with hot flashes. I changed to Pristiq from Zoloft because of z's interaction with tamoxifen. I mention this because Pristiq could be a possible alternative to Effexor for some. 

    Anyway, glad to be here and share our info with each other as we start this new phase.

  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited January 2014

    Hey LisaSp, thanks for telling me about Pristiq. I'm going to check into it.

    Hello SandyMomto3, nice to meet you. I don't seem to come across many ladies from NC on here, so I want to give you a big wave!! PM me if you like. I enjoy meeting ladies near me who are traveling the same journey. I live in Winston-Salem. 

  • LizzieK
    LizzieK Member Posts: 67
    edited January 2014

    HI anmfar

    I asked my doctor for a copy of my OncoType report.  My score is 17 which is still in the low risk category.  You are on the low end of the intermediate risk.  If I had your score I still won't do chemo.  I went through chemo two and a half years ago for throat cancer and don't want to go there again.  I would ask you oncologist for your relative risk given your age, cancer profile, etc.  Remember doctors want to do something and they love to throw all their tools at you.  Do what feels right for you.  As I found out there are no guarantees that a cancer, or in my case, a new type of cancer won't show up someday.  The probabilities are 100% when it happens to you.

  • vwbordelon
    vwbordelon Member Posts: 58
    edited January 2014

    Hi Ladies,

    I was on Tamoxifen for about 2 months after finishing rads and my only complaint was some "warm flashes".  Had to stop for reconstruction (had DIEP on Dec 17 in NOLA-oh how nice it is to have 2 boobs again) and now back on for a week.  Still having the " warm flashes" 2-3 times a night. I am on Lexapro (my happy pill) for my emotions that started midway through chemo.  MO wants me to stay on it for awhile because it will help with hot flashes.  I wonder if taking tamoxifen in the morning might help?  Anyway, I will suck it up with the hope it will keep me cancer free.  Have a great day ladies!  Who Dat!!

  • corpor
    corpor Member Posts: 56
    edited January 2014

    Hi all!

    Hopefully there is room for one more Happy

    I started taking Tamoxifen 12/28.  I split the pills until last night- that was the first full dose for me.  The only real SE I have at this point is irritability, but WOW I'm struggling.  I'm also starting to suspect I'm having issues with depression.  I had just started grad school before I was diagnosed and have to continue- it's where my health insurance comes from.  I just don't know how I'm going to get everything done I have to do and I'm seriously overwhelmed.  I've been exhausted, and I'm not sure if this is Tamoxifen, grad school, stress or what.  Any suggestions for the irritability?  My supervisor at work, who brings new meaning to the word "micromanage", just might lose his head Monday if I can't get this under control......

    Corpor

  • vwbordelon
    vwbordelon Member Posts: 58
    edited January 2014

    Corpor,

    Take a deep breath.  Now call your doctor and ask for something.  I was ALWAYS strongly opinionated about "happy pills", but I started having feelings of depression which was so not like me.  So now I am on a low dose of Lexapro and it has really helped to even out the highs and lows.  We have a lot to deal with medically, not to mention the rest of our life's challenges.  Put yourself first, ask for help and breath!

    All my best,

    Shawn

  • Monis
    Monis Member Posts: 472
    edited January 2014

    Since starting on Tamoxifen 1 month ago it seems my mood is extremely volatile.  I will seem fine one minute and then, for no apparent reason, I will suddenly become all teary and cry.  Big mood swings.  My brain has been taken over by aliens.  Hope my emotions level out eventually.

  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited January 2014

    monis, my moods were the same way. There would be no trigger for the crying jag, most of the time. All of a sudden I'd start boo-hooing. My poor husband! My moods did improve but as I noted before, going off my antidepressant helped. I discovered this by accident. One day I forgot my antidepressant and at the end of the day I realized I had not had a single crying episode. (3-4 a day was my average.) Then I tried skipping it again intentionally a few days later and again, no crying jags. So I stopped. 

    Hugs to all. We endure so much. ....

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