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Bottle o Tamoxifen

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Comments

  • elisabeth
    elisabeth Member Posts: 28
    edited April 2009

    Hi Harley.  I switched from Arimidex to Tamoxifen and I do cut it in 1/2 and take it every day.  I may move to taking a full dose everyday after I acclimate.  I don't see my doctors until June so I'll see what will happen.  I was cutting the Arimidex in 1/2 and taking it every other day.  My onc was okay with that because he knew it was so hard on me.  Also, I am very small and lean and my dx is such that docs aren't sure what is best for grade and stage one folks.

    Hope this helps a little.  I'll be anxious to hear what your doc says.

    E 

  • Harley44
    Harley44 Member Posts: 2,126
    edited April 2009

    Elisabeth

    Hmm...  I was grade 2, stage 1...  maybe a little different.

    I don't go back to see my onc til June, but I'll let you know what he says.  Of course, after my eye appt., I may be calling him to tell him  that I can't take Tamoxifen anymore, due to eye issues.  I hope not...

    Hugs

    Harley 

  • elisabeth
    elisabeth Member Posts: 28
    edited April 2009

    Hi Harley.  Thanks.  Do keep me posted and I sure hope the eye doctor appointment goes well.  I asked my eye doctor quite a while ago about these treatments and eye problems.  He said that they are extremely rare.  I hope that is the case for you.

    Warm wishes. E 

  • stefie
    stefie Member Posts: 25
    edited April 2009

    Hi to all.   I did not know there is a med for hot flashes. I have had a bad time with them ever since I went on tamox 11/2 year ago. How about the se's for this med. Please give me some info.  I am dreading the summer so bad.  Peace to all.

  • stefie
    stefie Member Posts: 25
    edited April 2009

    I started tamox in jan 2008 and had a carterat appear in june in the rt eye then the left eye by august.  I had both eyes done in nov.  It made me think it was the tamox but my eye dr was not sure.  Peace

  • NOLAmom
    NOLAmom Member Posts: 2
    edited April 2009

    Sorry ladies.  It is weight gain.  I have been on tomax for almost three years.  Also, don't worry about the hair loss.  I got all of mine back, plus more!!  The side effects are different for everyone, but the weight is pretty common.  As a doctor once told me, be fat and happy!!

  • Munchy
    Munchy Member Posts: 59
    edited April 2009

    I'm with Harley - the "new normal" does suck!

  • Harley44
    Harley44 Member Posts: 2,126
    edited April 2009

    I've been told, by the eye dr., that EVERYONE gets cataracts eventually, so they are just NOT interested.  They are not the least bit concerned that YOUNGER women are getting cataracts, too.

    Thanks, Munchy.   I keep hoping that things will get better.  Maybe it just takes time.

    Harley

  • mandy1313
    mandy1313 Member Posts: 978
    edited April 2009

    Tamox can also cause cataracts.  It is a rare side effect too, but if you are the one with the cateracts, it may not feel so rare.  So your opthamologists should check for them too.....

    Mandy

  • stefie
    stefie Member Posts: 25
    edited April 2009

    Hi girls   I have been on tamox for 1 1/2 years and i have lost about 50 lbs and am still losing.  The drs do not seem to know why.  I have been miserable ever since i started taking it.  Now i feel like my muscles are weakening. Does anyone else have this problem?  I can't seem to find anything that indicates this happening to anyone else. Peace to all.

  • Barbie7
    Barbie7 Member Posts: 126
    edited April 2009

    Oh Stefie, I'm sorry you are having a tough time with Tamox.  I don't know if my experience is anything like yours, but I do have an all-over sick feeling (I've been on Tamox for just over a year).  I have low grade fevers, horrible night sweats, pelvic pain plus other stuff that just makes me feel unwell every day.  Oh, and the fatigue... wow.  I hope you are able to find some answers to your weight loss. 

    Regarding the medication for hot flashes/night sweats.  If you are referring to Effexor XR, I urge you to do some research before starting this medication.  I went on it blindly (presecribed by my PCP).  After a few months where I saw no results, I decided to go off.  BIG problem.  I had a lot of withdrawl symptoms (double vision, severe headachees, nausea/vomiting, GI issues).  You need to taper off of the drug very slowly.  This drug is extremely effective for many, many people.  It just wasn't for me.  My only message here is to make sure you know how to come off it before you start it.  I was a bit miffed at my PCP who mentioned NOTHING about the SE's of the drug.  OK, I digress...

    Best of luck - I hope you can find some releif soon.

     Barbie

  • dcgirl
    dcgirl Member Posts: 22
    edited April 2009

    Hi everyone, I've been on tamoxifen since October and just got my period back - on the 1 year anniversary date of my mastectomy.  Sort of freaky!  I had hoped the chemo had knocked out the ovaries for good - it had been over 9 months since my last period - but apparently not.  I asked my oncologist whether we should now talk about ovarian ablation, and he said we should wait to see if my period re-establishes itself.  Which I guess means it might not be back for good.  Has anyone had theirs come back and then go away again - other than until the next month? ;-) 

  • Springtime
    Springtime Member Posts: 3,372
    edited April 2009

    Ladies,

    Have any of you heard that Vit D may "interfere" with Tamoxifen?? This was mentioned on another thread, so thought I would ask...

    Spring.

  • Harley44
    Harley44 Member Posts: 2,126
    edited April 2009

    Spring,

    Nope, I didn't know that Vitamin D interferes with Tamoxifen.  But, since everything seems to interfere with Tamoxifen, I'm not surprised.

    Harley

  • sunshine787990
    sunshine787990 Member Posts: 101
    edited April 2009

    Spring... My onc has me on calcium with vitamin D 2 x's a day...let me know if you see anything else?  Question about hot flashes??  During a hot flash I have this stinging feeling like bugs are biting me?? I know CRAZY huh

  • Springtime
    Springtime Member Posts: 3,372
    edited April 2009

    I am thinking it does NOT interfere, or I would have heard about it sooner! (I heard this mention/asked in another thread).

    I did a google search last night, and didn't see anything, other than one study making a note that Vit D may help with Tamoxifen absorption...

    Just checking!!

    Spring.

  • Springtime
    Springtime Member Posts: 3,372
    edited April 2009

    Sunshine, I get hot flashes (they don't sting, though!) and COLD flashes, that are almost more annoying. Or maybe it is the hot then cold then hot thing. sheesh!!!

    Spring.

  • sunshine787990
    sunshine787990 Member Posts: 101
    edited April 2009

    Spring....Thanks for the info!  Flashes...they are a pain...I'm off to my surgeon to get De-ported today!!!!!!!

  • Barbie7
    Barbie7 Member Posts: 126
    edited April 2009

    Today, 10 days after temporarily stopping Tamoxifen, I answered "How are you today?" with "I'm good."  Followed closely by "I'm GOOD?!?! oh my gosh I'm Good!!!  For the first time in a year and a half I said I'm good!!!"  My poor student employee was taken aback and with his eyes wide open asked "Why?" and I answered "Drugs."    I laughed, and my colleague in the office next to mine said "Wooo Hooo!!" 

    I've been taking the "inventory" of SE's for the last few months, and I was getting concerned that there wasn't much change after stopping the Tamox.  I really want to  blame everything on Tamox.

    I'm not sure if the blues have lifted and I feel better or what.  But I seem to have a little more energy today - even though I got no sleep last night because of the Night Sweats (those have not subsided one iota!).

    Let's hope this feeling lasts at least through the day!

    Good day all.  Barbie

  • Springtime
    Springtime Member Posts: 3,372
    edited April 2009

    Barbie, glad you are GOOD!!

    Sunshine, I was so glad to lose the port! Congratulations! :)

    Spring

  • Makratz
    Makratz Member Posts: 1,605
    edited April 2009

    Barbie, so glad to hear you are feeling better!  Are you planning on staying of the tamox?  Best of luck to you!

  • dee1961
    dee1961 Member Posts: 902
    edited April 2009

    Hi ladies,

    Please give me the run down on all the SE'S.

    The onco wants me to try to take this for the next five years.

    I am the side effect queen, if a drug has 2 side effects I will get 10...lol

    Thanks for your info in advance...take care:)

    Dee

  • slmdavidson
    slmdavidson Member Posts: 19
    edited April 2009

    UGH, I came here looking for on SE's too.  I started Tamoxifen about 2 1/2 weeks ago followed by Lupron 5 days later.  Daily headaches started within a few days and I never get headaches, so I'm blaming the drugs.  I've felt very lethargic - I have NO energy, my legs feel like wet noodles.  This week I started having nausea and body aches and felt like I have the flu!  I feel like absolute crap - I'm depressed and I feel like crying all the time and I've NEVER been like that.  I don't know how I could go on for 5 years if I feel like this.  I called my Onc today and they prescribed Effexor.  It's worth a try so I picked it up today (thanks Barbie about the withdrawal warning).  Anyone stop taking Tamox or Lupron?  Seemed to me that my Onc said the Lupron was just a "suggestion", not a requirement.  I may see about stopping that temporarily to see if I can feel somewhat normal?  Just when I thought I'd gotten through the tough stuff.....I think this is worse than surgery and radiation.  

    Thanks for letting me vent!  My husband doesn't understand. 

    Laura

  • Springtime
    Springtime Member Posts: 3,372
    edited April 2009

    slm, I've heard of Lupron with an AI, but not sure why Lupron with Tamoxifen? That is a new one on me.

    I've taken Tamoxifen for about a month now. Only SE is discharge that seems to come and go. Not Bothersome, ((I was already wearing a pad)), just different. 

    So much easier than chemo, radiation, etc... Maybe it's what you compare it to! ha!!!!

    Spring. 

  • Harley44
    Harley44 Member Posts: 2,126
    edited April 2009

    Barbie,

    Oh, I am so happy that you are feeling better!  Are you going to permanently stop the Tamoxifen?

    Laura,

    I think that this 'post treatment' period is worse than the "active treatment" ever was!!!

    Sending Hugs,

    Harley

  • heavenlyone
    heavenlyone Member Posts: 1
    edited April 2009

    Harley,

     I broke my prescription glasses last Friday and had to get replacements QUICK as I cannot drive at night without glasses, and had to go to San Diego on Saturday to see my ailing parents (Alzheimer's, and broken ankle and hip).  My eye exam was a real shocker when the doctor asked me if anyone in my family has a history of macular degeneration.  I've never heard of it so I said no.  He saw that I am taking Evista and asked if I have ever taken tamoxifen.  Well - the answer is yes.  I stopped taking it in November 2007 and had a hysterectomy March 12 (uterus, ovaries, fallopian tubes).  Imagine my surprise when now I find out I may go blind.

    I am VERY lucky as I have atypical ductal hyperplasia and have not had breast cancer.  My doctor explained the risks of tamoxifen to me.  I am thrilled I still am cancer-free.  I didn't mind the hysterectomy as I turned 50 this year and am anxious to become a grandmother - not a MOTHER again.  However, the thought of going blind is really bothering me.

    I should get approval to see a medical eye doctor this Friday, so I'm anxious to hear more about this.

    I hope all goes well with you and anyone else who has suffered some type of damage from taking tamoxifen.  Considering the risks for breast cancer, I think I still made the right decision to take the  Tamox.

    I'm so glad I joined this community - will keep in touch.

    Celeste in Burbank 

  • JustSaying
    JustSaying Member Posts: 5
    edited April 2009

    I've found that the Effexor XR is EXTREMELY helpful to me, it's a wonder drug in my case. Got rid of my anxiety, black thoughts, completely stopped my night sweats, gave me more energy, and I had my 1st Lupron shot on Monday (at the same time as my 3rd Zometa infusion) and so far have NO side effects from the Lupron.

    Regarding Lupron - at my cancer center, it's the standard of care to do ovarian supression in pre-menopausal estrogen positive BC patients. 

  • Harley44
    Harley44 Member Posts: 2,126
    edited April 2009

    Celeste,

    Thanks!  I am still SO VERY SCARED about going blind, but I'll wait til my appt. on Monday 5/4, and then I'll deal with it. 

    How long did you take Tamoxifen?  If you like, I can send you a pm, because I have LOTS of questions. 

    I still believe that my BEST SHOT at preventing a recurrence lies in taking the hormonal treatments, but GOSH!, the long term risks / se's are so mind boggling!!  It's just so SCARY!!

    Well, I'll try to post after my appt. on Monday, if I'm not too grief-stricken to even post or speak.

    Harley

  • sunshine787990
    sunshine787990 Member Posts: 101
    edited April 2009

    slmdavidson... Bless your heart...I say call your ONC nurse or Dr. immediately and tell them everything you are feeling..They are there to help you.  I only take tamoxifen....I don't know anything about the Lupron. The tamoxifen se for me are mainly hot flashes,  I pray your feeling better soon.

  • Susers
    Susers Member Posts: 22
    edited April 2009

    Harley -

     I have been off Tamox for 3 weeks now and have noticed a marked improvement in my eyesight.  I am no longer straining and needing my readers constantly. I was on it for 1 year until my side effect started to effect my daily life and comfort. I am not sure if I will go back on it at this point but 99.9% of me is ready to take the natural route.

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