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Bottle o Tamoxifen

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Comments

  • ndgrrl
    ndgrrl Member Posts: 645
    edited September 2013

    Hi,

    I am also new to this board and about to start on my next step of my journey from BC. I was dianosed in July 19 had surgery Aug 19. Started internal Rads on Sept 9 and finished those on Sept 13th the same day my sister was dianosed with breast cancer. :(   I found out my Oncho dx results on Sept 16th and i scored an 18 and the ON said no Chemo- I was doing the happy dance until a friend of mine said her ON would have given her chemo- grrr. Just what I didn't need to hear when my ON is so new to me to start with and rather bizarre.

    I saw my Onchologist Sept 16th and he prescribed Tamixofen and I am scared scared scared to even open the bottle. My hubby did pick it up for me but that is it. I am supposed to see the ON Nurse Practionoer on Oct 14th to tell her how its going and I have not even wanted to start yet.

    I am healing from internal rads and having a few side effects so was shocked he asked me to start right away, I guess then maybe I wouldnt now what SE was from the Tami or the Rads? I didn't start though. Probably should call the ON office and cancel my appt.

    What do they look for when you are on Tami and they take your blood?   Is Tami actually a "chemo" drug.  I am 44 and scared to go into menapause when my overies stop working.. :(  I was told there was a shot that they give some women that will stop the overies so they do not have to take Tami. I wonder after reading the side effects if that would not be better.

    Ohhh the worries.........

    Have a good one.......

  • RunFree16
    RunFree16 Member Posts: 649
    edited September 2013

    Ndgrrl, you've had quite a ride.  That's a lot to go through in a hurry, and now your sister too--no fair!  Maybe you can ask your onc if it would be OK to wait a few weeks to start Tami.  But my advice is, don't be scared to start it.  I was nervous and the first time I met my onc I told her all my fears, which side effects I was most worried about, and she said, You know, I think you're going to be fine.  And so far, I have been, except for my skin thing, which I'm not yet sure is related.  She also said it takes a few weeks for most side effects to appear, which calmed me down, since I was picturing some instantaneous chaos. The shot you're talking about is called ovarian suppression, or OS.  My onc said the side effects of that are noticeably tougher to take, for most women, than Tamoxifen, because it's like hitting menopause all of a sudden, whereas Tamoxifen doesn't block estrogen from your whole body, just from any stray cancer cells.  As for your Oncotype score of 18, I think your happy dance was warranted.  There's a reason the company says people with scores of 18 and below won't benefit from chemo.  It is not in the company's interest to recommend against chemo and have that fail, so it could be that the real number is more like 25 and they said 18 just to be safer.  Anywhere from 19-29 isn't a guaranteed chemo either, and you're below that range.  It's normal to be really scared (see what I and others said about just-post-treatment jitters and blues), but Tamoxifen is not the enemy and for most people is a powerful bodyguard.

  • heartnsoul76
    heartnsoul76 Member Posts: 1,204
    edited September 2013

    Bounce & ndgrrl - no need to be afraid to take Tamoxifen. I've been taking it for 2 years and 9 months and just now having some side effects.  As far as the tinnitus goes, women on the AIs experience that too.  I think after a while any prescription drug builds up in you.  What I hear is that the doctors often recommend women take a break from their AIs or Tamoxifen and then when they go back on it their side effects are gone.  I may end up doing that if my supplement plan doesn't help (but the buzzing in my ears is a LOT less today!).

    The chances of any significant side effect are MUCH LOWER than the chance of breast cancer recurrence!  So don't hesitate to take the Tamoxifen.  I could have taken an AI but I chose Tamoxifen because the AI side effects were much worse IMO.  Heart issues, cholesterol problems and bone loss.  Plus, Tamoxifen has a 40-year history so we know it doesn't have any distant side effects.  AIs have only been available for about 10 years - they have no idea what might happen a decade or two from now.  

    You will more than likely be among the many with no side effects.  Nausea and sleep problems are much more preferable than breast cancer, right?

    Good luck to you both! Chevy, Jo and I are the exceptions - not the rule - and I'm not even sure I have anything to complain about, haha.  But I do think women would like to be able to compare notes if they have any symptoms that are bothering them.  You likely won't hear about these from your doctor.

  • jo1955
    jo1955 Member Posts: 7,545
    edited September 2013

    Bounce & ndgrrl - Heartnsoul is so right.  Don't be afraid to take Tamoxifen.   I have been on it since Jan 2011 and other than the uterine issues which in my case is the EXCEPTION not the rule, I have had very minimal side effects.  Have had some sleep issues but then I had those before all this crap.  When I got my very first prescription, I just took the plunge and started taking it.  I would rather put up with minimal SEs than a recurrance.  This was uncharted territory for all of us.  We learn from each other.  We share our experiences and encourage each other to do all we can to beat the beast.  I have no complaints and am usually around to answer any questions.  Anyone can send me a PM at any time.  I check BCO at least once a day sometimes more.

  • Lacey12
    Lacey12 Member Posts: 2,895
    edited September 2013

    Just want to pop in to say how much I have enjoyed reading the recent thoughtful, intelligent posts by you ladies. I think that anyone starting on Tamox would benefit from your shared experience, wisdom and support.



    On a separate but related note, tonight I was at an event talking to a woman I see occasionally. I had not known that she was in our illustrious club, but something I shared encouraged her to tell me about her BC experience. She was diagnosed 8 years ago. She finished a five year course of Arimidex with no side effects. My jaw must have dropped, as she then said her MO called her the poster child for Arimidex. Amazing how we all vary in our response to pharma! I envy her. She said she initially could not imagine taking the drug for five whole years (even w/o any notable side effects! ), and now has already been done for three years. So, we'll get there....

    ....and I have to say that I felt encouraged that my MO clarified last week that we will just keep working together to help get me through these five years on Tamox (no switch to an AI) since that should be all I need. My oncotype was very low...a 4...so I am now motivated to try to get through this little marathon with the Tamox....and will address SEs as they arise. So far, I think the Ativan is helping me get at least some sleep. That will be a big help.

  • bounce
    bounce Member Posts: 215
    edited September 2013

    Dear Lenn13ka, RunFree16, Heartnsoul76 and jo1955 -

    Thanks so much for the encouragement.  You are so kind to put aside your suffering to encourage us newbies.  I will be taking the Tamoxifen if that is what my oncologist prescribes.

    Feel totally free now to go on complaining about the stuff - that is what this discussion board is for - it is your space for talking about the things other people just don't know about, or care about, or understand anything about.

    I also learn so much from your posts so while you are venting you are also educating and helping others.

    Hugs to you all.

  • ndgrrl
    ndgrrl Member Posts: 645
    edited September 2013

    Thanks everyone for the warm welcomes.

    Yes I am scared to start Tami but also a bit relieved knowing there are others out there not just me who has to take this drug and I can come here to ask questions if needed.:)

    I have it on my cupboard and as soon as some of these rad side effects leave I will start- hopefully next week.

    Thanks again for all the information and knowledge.

  • IngridJ
    IngridJ Member Posts: 46
    edited September 2013

    Hi to all fellow Tami travellers..

    Am hoping to join you all on a smooth ride...I started tamox last week, have already had dread insomnia.. Awake until 3 am..Used to sleeping well; as soon as head hits pillow generally, after four kids and years of disturbed nights, really value sleep.. Anyway, reading through some of this thread can see its a fairly normal side effect.



    Apart from that, so far so good.. Appetite is off though, could be a good thing as I'm trying like us all to change/improve my diet. I was the carb queen...I say WAS.. Now I'm more the carb junior...



    Have been reading about metformin, see where some say the main benefit is taking it during chemo (if you're doing chemo), too late now, but am thinking of giving it a try...



    Thanks for all the thoughts and encouragement on this thread..



    Am pretty determined to take it so hopefully...

  • Ivano02
    Ivano02 Member Posts: 5
    edited September 2013

    Hi...I am new as far as posting.

    I am 66 years old and started Tamoxifen three weeks ago.  For me I experience side effects early.  I am having trouble sleeping, feel like I am hungover every day, fuzzy thinking, tired and the past four days I am experiencing abdominal cramps like menstrual cramps.  I am having trouble functioning.  As anyone experience those side effects.

    I tried taking Tamoxifen at different time during the course of the day and it did not help.  I stop taking the pill yesterday and ask the pharmacist for a different brand.  I was on Watson and I ask for Teva.  I am hoping this will make a difference.  I have always been sensitive to medication.  My tumor was only 3mm and I am wondering if this is worth the trouble.

  • Hollycat
    Hollycat Member Posts: 5
    edited September 2013

    Hi all. I have been on Tamoxifen for 9 months. I have had no issues. I also started Effexor at the same time and I have had NO night sweats. I am premenopausal and was really starting to have some peri menopausal issues prior to the tamo/effexor combo. I did have very erratic bleeding and a few periods...I have had none since July. I have to go to my OB/GYN every 3 months for an endometrial biopsy to make sure I don't have uterine cancer from the tamoxifen which is a pain...so thinking about a hysterectomy. What is one more surgery?? My doctor plans to keep me on the tamoxifen for 10 years....yikes! Glad I can tolerate it. Oh yea..my skin in dry and my hair is thinner and dryer but minor complaints if it is keeping the cancer away. PM me with any questions!

    Hollycat

    (Jill in Birmingham, AL)

  • IngridJ
    IngridJ Member Posts: 46
    edited September 2013

    Hi Hollycat and Ivono02,



    Thanks, good to hear from fellow new tami takers!!



    .. Hollycat- sounds positive, no insomnia, few s/e's, but more vigilance on the endometrial checks. I agree, surgery seems like an easy (well, easier) path these days.. does your onc think thats what you should do? I am pre menopausal also, but stopped periods during chemo, hopefully never to return...



    I had another sleepless night, maybe Effexor might be the answer at night hey..Hope the tami doesn't make my hair even thinner- it's just growing back!!!!



    Ivano- did you get oncotype test for your tumour? I agree, 3mm is very small.. What does the oncologist say? Maybe you could get away with taking tami for less time?



    Well, up and off to take mine now..

    Morning here, hope all you have a good week.,

  • josie123
    josie123 Member Posts: 1,749
    edited September 2013

    Hey is anyone on just 10mg of Tamoxofin?

    I plan on taking 1/2 a pill of my 20mg until I talk to my MO about feeling so tired.Since I've been on the smaller dose I have so much more energy.But I wonder if there is as effectiveness.

  • smo23915
    smo23915 Member Posts: 71
    edited September 2013

    Ivano if you can get the Mylan brand it might ease the SE.  I don't know if you can find it but some CVS pharmacy still carry that brand.

    I also had a small tumor 2mm.  Too small for the Onco test, were you able to get the test for your small tumor?  I got 5 second opinions, traveled to different sites (UofM, MD Anderson, John Hopkins) and they all told me the same thing- taking Tamoxifen is up to me because of the size and no node involvement.  I was hoping someone would give me a definite yes or no.  I decided to stick with it until December and see how I am doing.  I have been on it since February and major side effect is insomnia even with Ambien.  I am going to have a sleep study to see if there is another reason for the lack of sleep.  My nails and hair are very thin now and some joint pain.  But to be honest I expected worse.  My uterine lining is getting thicker but from what my GYN said and what many on this board said that is normal.  It seems so many of us had to have the biopsy of the uterus and although somewhat ouchy mine was ok.  (thankful for that)

    If anyone is from Michigan there is a great GYN at UofM that just sees BC patients  on Tamoxifen and the other BC hormones.  He is excellent.  I highly reccommend him, his name is Dr. Pearlman.  He is very knowledgeable on Tamoxifen and even told me the benefit I am getting is only "maybe" 1 percent.  I also had BMX.

    Sharon

  • jo1955
    jo1955 Member Posts: 7,545
    edited September 2013

    Welcome to all the newbies!  For those of you with thinning hair and brittle nails, give Biotin - 5000mcg a try.  I started taking it on the advice of others here and my hairdresser fusses about how thick my hair is now and I do have to get it cut more frequently.  I have always had nice thick nails and Tammi did a number on them in the beginning - now back to the way they were.  Uterine lining thickness is common and I would keep an eye on it.  If you read back to some of my other posts, you can read my uterine story with Tammi.  I will emphasize again that my situation is the exception and not the rule.  For the sleep issues, do talk to your MO about those.  Really, if you consider the bigger picture, the SEs we are experiencing are doeable.  Better than having to go through all this crap again.  I have 2 years, 3 months and 9 days left - but hey, who is counting?  hahaha.  Any of you ladies are more than welcome to send me a PM at any time.

  • Ivano02
    Ivano02 Member Posts: 5
    edited September 2013

    I was not referred to an Oncologist my Breast Surgeon is prescribing the Tamoxifen. She is the director of the Breast Cancer Facility.x To small for Oncotype test. It was grade 2 but only in the left breast and only one spot.



    I thought Mylan was no longer making that drug.

  • jaine
    jaine Member Posts: 3
    edited September 2013

    I stand corrected on my information regarding Australia and Tamoxifen.  According to Dr. Janey Little, a Dr. who lost her mother to live cancer as well from Tamoxifen and believes in going the Holistic route, in her book is quoted as saying:

    ‘Various institutions have subsequently recognised this, including Australia’s National Health and Medical Research Council (NHMRC) who stated that no amount of Tamoxifen is safe with regards to its carcinogenic effect.’

    I want to thank you all so very much for your kind thoughts, suggestions, and feelings … it means SO much to me and I know I must make this decision on my own. 

    Right now I am taking the Tamoxifen.  I am hoping the side effects will lessen as time goes on since I have only been on it a short time.  But … in the meantime, I will read and research, and yes, I may go the holistic route if that makes me feel more comfortable. 

    It is a fearful thing to be taking a Carcinogen that I have been told by my doctor and have researched as well – only blocks the Estrogen from the ducts of your breasts … it does not block any cancer cells from developing in other areas of your body – in remote areas as some of you have told me.  Sometimes I get so much information that I don't know what to believe!  But it is comforting to discuss this with ya'll who are going through something so similar.

      I will figure it out, what is best as far as the risks go, and what I should do just as you all have done or are trying to do as well.  

    Lots of hugs and kisses from one survivor to many others … Jaine 

  • IngridJ
    IngridJ Member Posts: 46
    edited September 2013

    Hi Jaine..,

    Agree... The whole thing is a mind bend... I thought tamox roamed around the whole body blocking oestrogen fuelled cells..???

    Are you sleeping ok?? I know that's the tamox because it started within 5 days of starting. Feels like I've had coffee too late and can't get to sleep.. Arrrrrghhhhhh

    And your appetite???

    Thanks Jo.. Am heading off to get biotin today!!!! Don't want to see a thin head of hair get thinner!!!

    Thanks everyone..

    Have a good day..

  • jaine
    jaine Member Posts: 3
    edited September 2013

    Hiya Ingrid!  Ironically I worked at an art show this weekend and worked SOOOO hard, long hours, physically - I am wiped!  Very very tired.  And so for the past 2 nights I have slept very soundly, but usually - before this weekend, that is, I have been up every single night - sometimes several times and can't always get back to sleep.  Awful!  I can fall asleep - but can't stay asleep - and believe me, I was NEVER an insomniac ... never had a problem sleeping for 12 hours if I wanted to through the night!  Wink

    My appetite seems fine ... so far!  Thank you for asking!!!  For me right now it is the depression that is kicking in a lot .... before I was euphoric that my cancer did not spread, did not need any treatments - and then suddenly I started with the Tamox and bam!  I felt like I ran into a wall.  Still do.  So, I don't think I am going through any trauma tha others have mentioned ... I had no treatments with the exception of the surgery - the DM.  And I have been very very happy since ... again, until the Tamox.  I am on Prozac for severe PMS ... it has worked for me for many years with no problems.  But now I think the Tamox and the Prozac are not getting along very well.  The idea of trying different anti-depressants frightens me as it took forever for my doctor and I to land on Prozac.  I don't want to go though all of that again - trying this or that to see if it works only to discover it does not.  That alone is a roller coaster ride! 

    My doc told me Tamox produces more Estrogen throughout your body, but blocks the cells in your breasts only. How that works, I am not sure. I have also looked it up on medline and other authorative sites, and it seems to say the same thing about Tamox.  I could be mistaken.  I am so new to this drug - so new to researching it, but I am trying to gather as much info as I possibly can to make an educated decision whether or not to remain on this drug for the long term of 5 years.  I am also concerned because my grandmother had Uteran Cancer ... this did not seem to bother my Onco in the least.  As you said, Ingrid - it is a 'mind bend.'  It really really is!!!!!  

    And Jo!  Thank you thank you thank you for the Biotin recommendation. I am having the same trouble - I have clumps of hair coming out of my head every night in the shower.  I can't get over it!  I began to think that what some had told me it being a chemo drug (it is not) were right!  I managed to escape chemo because of my Onco score and my Oncologist (two of them - both not connected) told me I would not benefit from it.  Hence, the Tamoxfin. 

    Have a good day or night wherever you are living all!  Thank you again.... 

  • jo1955
    jo1955 Member Posts: 7,545
    edited September 2013

    Ingrid - Biotin is very inexpensive and can be found in the vitamin aisle of your local pharmacy, Walmart or grocery store.  Give it about a month before you see results.  I make no guarantees it will work for me but it certainly has worked for me.  

    Ivan002 - I'm sure you have a wonderful Breast Surgeon - mine was also fantastic and he did insist on me seeing an oncologist -  BUT if it were me, I would be more comfortable seeing an Oncologist.  They do all the various blood tests and keep up with the latest research, etc.  My MO also does a breast exam each time I see him as well as schedule my mammograms.  That is just me!!!!

  • RunFree16
    RunFree16 Member Posts: 649
    edited September 2013

    Jaine, now I'm confused.  Tamoxifen is prescribed for metastatic breast cancer--why would that be, if it only blocks estrogen from cancer cells in the breast itself?  If you find that answer I'd really like to know.

  • survivorofit2013
    survivorofit2013 Member Posts: 1
    edited September 2013

    I hope you are correct about the weight loss.  Mr dr says just the opposite.  WEIGHT GAIN!!!!  I also saw that nausea is another side effect.  I really don't know if I can deal with that again.  Chemo was enough.

    Haven't started mine yet, and already feel depressed.  Reading all of the side effects, how couldn't one be depressed?

  • IngridJ
    IngridJ Member Posts: 46
    edited September 2013

    Hi

    Thanks everyone.. I feel like we're all in a ship together, it's rocking from side to side but we'er all supporting each other and hanging on...

    Jaine, will have to do some excersize and see if it wipes me out so can sleep. Also; I have just started Pristiq, basically it's Effexor, for mood and motivation..

    And helps w hot flushes supposedly. Too early to tell but I think the hot flushes have decreased slightly.. Phew....

    Survivor: Hi... Re weight; I def feel less hungry

    so trying just to follow that- and eat when hungry good food..

    That's all we can do..Everything has side effects hey... I figure all the wine I used to drink must have been slowing me down; I feel ok..

    Thx for Biotin tip Jo..

    Bye from Aus everyone..

  • lahela
    lahela Member Posts: 145
    edited September 2013

    At the end of June, I had an abdominal ultrasound and they found a 6cm cyst on my right ovary. Nothing was done about it because I was diagnosed with BC right after that, which the doctors felt was far more urgent. I've been taking Tamoxifen for just over 2 weeks and now have a sharp pain where that ovary is.

    The MO originally said he wouldn't recommend an ooph and that the cyst could wait until my abdomen was healed after my surgery because my sister had the BRCA tests done after her BC and it was negative, as was my CA125 blood test.

    I have another appointment with him in 2 weeks' time, but now I'm wondering if I should try to get in sooner... but I don't want to be a panic-merchant and run to the doctor every time I get a symptom. Is this kind of pain normal with Tamoxifen? Any opinions?

  • Delvzy
    Delvzy Member Posts: 454
    edited September 2013

    Hi girls just joined this post. Have been on Tamax for 5 years next April not too many se just a bit of fatigue belly gain have to make a choice whether to stay on another 5 years or swap to femara or just stop. I am scared to do any of those choices

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited September 2013

    The Australian NHMRC Guidelines for breast cancer can be found at the link below, and the section on Tamoxifen starts on p84. Really, it doesn't say the risks outweigh the benefits - it says the opposite ie: it's worth taking because it reduces incidence of recurrance significantly...



    http://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/cp74.pdf



    Jenn (in Australia)

  • RunFree16
    RunFree16 Member Posts: 649
    edited September 2013

    Jenn, thanks--this line seemed to me particularly helpful: 

    "Although the incidence of endometrial cancer is increased by tamoxifen therapy,

    and the increase may be greater with more prolonged therapy and tamoxifen

    doses above 20mg/day, the overall risk based on Australian incidence figures

    remains approximately 1 in 1000 women per year. Hysterectomy rates in the

    population will affect this risk, and additional data will be emerging from ongoing

    trials. This increased risk from endometrial cancer is vastly outweighed by the

    protective effect of tamoxifen against recurrence of breast cancer.

    Data from the overview

    297

    and from the breast cancer prevention trial

    339

    indicate

    no increased risk of any other cancer among women taking tamoxifen."

     

    However Jaine, I don't know where the book you read was quoting from.  If you still have it could you look at the footnote?
  • gemini4
    gemini4 Member Posts: 320
    edited September 2013

    RunFree, that was my understanding too. Around the time I started tamoxifen, I found a blog called thesarcasticboob.com. The author, Scorchy, is also on BCO boards. (I love her blog and her writing.) She was dx'd stage IV from the start, and sounds like so far her main treatment has been tamoxifen for her bone mets.



    My understanding is the tamoxifen binds itself to the estrogen receptors in breast cancer cells (tricks the receptors into thinking tamoxifen is estrogen and then starves them), and these cells can be present outside the breast tissue. But, I'm no oncologist, so I could be wrong.

  • Delvzy
    Delvzy Member Posts: 454
    edited September 2013

    Thx Jen and girls good for thought I would prefer to stay on tamoxifen for another 5 years because I am scared of bone aches and loss ( mum has osteoporosis ) better the devil you know . I am probably post menopause now but I seem to have read that swapping to femera is better for my type of cancers but you have to look at the quality of your life as well

  • scrapmom40
    scrapmom40 Member Posts: 29
    edited September 2013

    I am wondering how many of you have finished your first 5 years on Tamoxifen and have decided to do another 5?  Or how many of you were told you should do another 5, but chose not to.  I met with my oncologist 2 weeks ago and she wants me to do another 5.  I filled the prescription but have yet to start taking again.  The only se's that I really suffer from are hot flashes, night sweats and weight gain.  When I first started taking tamoxifen back in 2008 the thought was just to do 5 years.  Now it has changed to 10 and I just can't seem to wrap my head around taking it for another 5 years, but I don't want to be stupid (for a lack of a better word).  If ultimately taking tam for another 5 years is going to prevent cancer from coming back, then the choice should be easy so not really why I continue to struggle with taking it for the next 5 years.  Would love to hear what your decision was and why?  Thank you!!

    Karen

  • kslansky
    kslansky Member Posts: 112
    edited September 2013

    I started Tamoxifen this past July.  My MO said 10 years (the study had just come out when I was DX) of Tamoxifen or something else once I am clinically in Menopause.

    For me, it's a no brainer.  My dx was stage 3 grade 3.  BC was found on my annual mammo...which was on time.  I'm at high risk for recurrence so I'd rather deal with the SE's (mostly fatigue, weight gain and joint & muscle pain) than the alternative.

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