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35 and I hate my life thanks to Tamoxifen

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13

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  • Suzybelle
    Suzybelle Member Posts: 102
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    Wow.  I was going to gripe some more about Tamox. but reading Marybe's and gemo's posts just shut me right up.  Thank you, ladies, for the reality check.  And thank you so much for sharing your experience.

    Tamox. is not a lot of fun sometimes, but there are worse things!

  • dawn0606
    dawn0606 Member Posts: 2
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    Hello, I was diagnosed with DCIS in May 2008.  I recieved a lumpectomy & radiation for 7 weeks.  I started taking tamoxifen in Oct. 2008.  I have had horrible side effects of sweating, absolutely NO sex drive, mild depression & major weight gain!  I just decided to go off of it.  I'm going to give myself a month to see how I feel & if my weight drops after being off of it.  Has anyone gone off of this drug?  And for how long?  Of course, i'm afraid of reaccurrance, but i'm a 44 year old single woman & would like to date & look good for myself & potential partner.  However, being on this drug for another 3 years is just unbearable to me.  I had a very low grade cancer & feel my chances for reaccurance are slim so why do I really need to be on  this horrible drug.  I just want to know if anyoine else has decided to go off of it too???  Any support would help.

     Thanks,

    Dawn 

  • rgiuff
    rgiuff Member Posts: 339
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    Dawn, I've been on it almost as long as you, since Nov 2008.  I did take a break from it last summer for about 6 weeks and some side effects did let up.  I've also had a complete loss of libido, hot flashes that get better and worse in cycles, and frequent vaginal discharge.  Depression also seems to come and go, pretty similar to what I used to feel when I was premenstrual.  Periods have also become a rare occurrence, but I am 49 and they were getting sporadic anyway.  I feel like my skin has aged noticeably in the last year and a half more than ever, but then again, I will be 50 in November and always looked 10 yrs younger than my age, so maybe time is just catching up with me now?

    I frequently think about just doing 2-3 years and then stopping, because I worry about long term effects of developing another cancer, and 5 years feels like such a sentence.  What I will probably do is take another break from it soon and see if any side effects let up.  I need to know that there is light at the end of the tunnel if I do continue this drug for the full duration, and my way of getting through it will be to maybe take an annual break from it for a month or two. 

    If I had had DCIS, then I probably would feel safer about just stopping it altogether much sooner.  I know 2 people with DCIS who never took it at all, they were given a choice and both chose no, and their docs were fine with that.

  • MarieKelly
    MarieKelly Member Posts: 33
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    Dawn, I also had a very low grade cancer - now almost 6 and a half years since diagnosis just a week after my 49th birthday.  One oncologist insisted that I take tamoxifen and another suggested arimidex, but I refused them both and never even tried either one of them. felt that already having gone into a natural menopause 8 months prior to the diagnosis was already enough estrogen deprivation considering the kind of cancer I had. I also wouldn't do radiation after my lumpectomy, yet in refusing it all I'm still doing fine without it. So did I really need any of it during these first 6 + years? Obviously not.

    Those of us with low grade cancers have more wiggle room in declining certain treatments and if quality of life becomes an issue, then that wiggle room is something that needs to be recognized and acknowledged. Chances are you probably would do fine without ever taking it, but the only way of every knowing that for sure is to go without it and that's not any easy decision to make for most people.

  • HelenaJ
    HelenaJ Member Posts: 304
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    Dawn, a friend in my support group has DCIS and is not taking tamoxifen - it wasn't even offered to her (perhaps treatment is different down here in Australia??) nor was she referred to an Oncologist (she just turned 40).  I am presuming however it is because she had a bilateral mastectomy and tamoxifen would be to help prevent a recurrence in the breast tissue.  She is also BRAC1&2 negative.

    Like Rose (hi Rose Smile ), I too am noticing signs of ageing - furious that the last few good years I have left is being whittled away with Tamoxifen (I am 48) but after just celebrating my birthday in May I am grateful indeed to be celebrating every extra year.  I have asked my Oncologist on numerous occasions if I have to take the whole 5 years (I am now up to 18 months) and also to follow it up with an AI but he justs tells me that perhaps over the next few years more information will come along so to just hang in there.  The only real reason I am taking it is that I had isolated tumor cells, although "officially" node negative, I can't live with the fear of not taking tamoxifen in case some of those cancer cells got through.

    Having DCIS I would ask your Oncologist again about the benefits of taking tamoxifen. 

    big hugs

    Helena

  • MarieKelly
    MarieKelly Member Posts: 33
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    Helena,

    If the only reason you're taking tamoxifen is because your SNB had isolated tumor cells, you might be interested in the following information -

    http://jco.ascopubs.org/cgi/content/full/24/13/2013

    RESULTS: IN ALL CASES, THE CYTOLOGIC FEATURES OF THE EPITHELIAL CELLS IN THE SLNs WERE BENIGN, AND 22 MATCHED THOSE OF CORRESPONDING INTRADUCTAL PAPILLOMAS that were involved by or were separatefrom the DCIS in the original cores or surgical biopsies. Fifteencases were pure DCIS; most invasive tumors were smaller than1.0 cm. In six carcinomas (DCIS) showing strong Her-2/neu staining,the corresponding epithelial cells in the SLNs were negative.In 13 tumors that were strongly and uniformly positive for estrogenreceptor (ER), the cytokeratin-positive cells in the SLNs werenegative for ER. Nineteen cases showed benign epithelial celldisplacement at the biopsy site.

    CONCLUSION: Epithelial cells in SLNs may result from transport of displacedcells, USUALLY ORIGINATING IN INTRADUCTAL PAPILLOMAS. Positiveimmunohistochemical results in SLNs should be interpreted withextreme caution to avoid automatically concluding that suchcells represent metastasis. SENTINEL LYMPH NODES IN BREAST IN BREAST CARCINOMA CAN BE FALSELY POSITIVE..

  • HelenaJ
    HelenaJ Member Posts: 304
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    Thanx MarieKelly for the link.  From what I gather, and I could be reading it wrong!!, the 25 cases involved in the research were of DCIS.  I had invasive breast cancer but the thread of the link is the same however in the fact that the cells may have well got into my lymph nodes due to vascular invasion as I had a core biopsy and lumpectomy (all ended up in a bilateral mastectomy) in where the cells could have been disturbed and moved through to my nodes.  There has been a lot of research done on ITC's and some threads started here about treatment for ITCs and micro invasions and due to my worrying nature (and my girls only being 8 and 11) I chose to take tamoxifen.  If I had DCIS then I may have chose differently.  But I guess I will never know.

    Thank you for taking the time to post the link - very interesting. 

    big hugs

    Helena

  • 2z54
    2z54 Member Posts: 29
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    Hi Nikki,

    About 15 posts back, or so, someone mentioned going to a naturapath.  Well, I had bmx because I had bc in each breast; one was TN, and the other very small lump was e+.  My onc wanted me to do Arimidex for that, but I had been on Lupron because of endometriosis twenty years ago (I'm 56 now) and had already learned about the side effects of removing our estrogen.  I felt like 80 at 35!  I was very concerend about QOL, and since my estrogen + tumor was <1cm and Grade 2, while the other tumor was more agressive TN, grade 3 I bargained with my onc that I would forgo Arimidex and lose weight, exercise, etc.  And that's what I've done.  In Feb. I took myself to a naturapath, spent a lot of money on tests and supplements, and learned that I'm hypothyroid, insulin resistant/pre-diabetic, and even had metabolic syndrome (which prevents weight loss, among other things).  I've completely changed my diet, eating smaller portions more often and mostly vegetables - all kinds.  And, I've dropped 25 lbs.  I still think I need to lose 20 more, but others tell me that's too much. I'll be happy to lose 10.   The point of all this is, that we can influence our estrogen levels and our overall health, and work to keep a recurrance at bay by alternative means. Of course I'm not positive this will work, but at least I feel wonderful and I feel like I have more control of my desitiny.  There's never any gaurantee that the Arimidex, or chemo for that matter, will work either.  At least I have the benefit of making my body feel and look much better! 

    I guess we have to find what works for each of us! 

    sue

  • dawn0606
    dawn0606 Member Posts: 2
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    Hi again!  I want to thank everyone who responded to my post.  I feel a little bit better now about taking a break from it for awhile.  Tamoxifen has really done a number on my body.  It made my periods excrutiating.  I already had terrible cramps, but the tamoxifen made them 10 x's worse.  It got so bad I was taking perscription pain meds & felt like I was OD'ing on them during my menstral cycle.  I already had two prior D & C's for uterine polyps.  I also had to have a biopsy to make sure tamoxifen wasn't giving me endometrial cancer since my lining had majorly thickened.  

    Between, sweating constantly, cramps that held me up in bed for two days a month, major weight gain & absolutely Zero sex drive; well I just couldn't take it anymore.  I'm 44 & never had kids so I decided to get a hysterectomy.  I only had my uterus removed.  My ovaries are still intact.  The last thing I wanted was to have to go through menapause any earlier than needed.  Now I have no more periods/cramps & life is great in this department.  However, the tamoxifen makes me hungry, depressed, skin feels aged, sweating constantly & no interest in sex.  I just don't want to live my life like this anymore.  So I'm definitely taking a break to see how my body responds without it.  Today is day #2, but I'm sure it takes awhile for this to get out of my system.  I just want myself back again!

  • Annie62
    Annie62 Member Posts: 92
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    You are your own advocate. As my onc said, "i tolerated tamox well'. No SE's. Ummm. Moderate hot flashes were the only SEs to affect my daily life. I am thankful for that. But,  I had sexual SE's that over the course of 2-3 yrs were intolerable. I could not have intercourse with DH - and that is putting it mildly. I'm in my 40's.  . We've worked on it - hard - no pun intended (See the mojo thread), but my point is that if I had any more SEs I would have taken matters into my own hands no matter what ONC said. I'm fortunate to have an experienced educated GYN who keeps an eye on me while I'm on vagifem. If I'd had extreme mood swings or body aches, I would have made change. Everyone is different. And most oncs don't believe that some people have bad SEs from these drugs.  I have an SIL by marriage that had extremely harsh SE's - mostly mood related. Going of Tamox was good for her. You are capable of figuring out your own situation.YOu know what you are capable of - long an short term.

  • rgiuff
    rgiuff Member Posts: 339
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    Hi Helena!

    And Dawn, it can take more than a month to completely clear your system.  This is why I took a 6 week break from it last year.  I wanted to know what it felt like to be completely off of it and back to normal.  Please keep us posted on how it goes.  I'm very eager to hear!

  • capefolk
    capefolk Member Posts: 1
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    Hello! 

    I have been on Tamoxifen for 2 and a 1/2 years and it has been a struggle.  I understand what you are experiencing.  I absolutely hated Tamoxifen.  I couldn't imagine staying on it for 5 years.  I wanted to let you know that I have found immense relief from Acupuncture.  I was struggling with depression and mood changes and my period was out of control.  I was having 3 to 4 weeks of pms symptoms and getting my period every 6 weeks.  I had a D & C because of thickened lining.  I also have Endometriosis and the Tamoxifen increased made the pain from that much worse.  I was very unhappy and angry all of the time.  I was isolating from my husband, my children and my friends.  I had also gained weight and felt very fatigued.  I started the Acupuncture last March (2009) and it has been amazing.  I get my period every 28 days and the pms symptoms occur only  for about a week.  My endometriosis pain is very manageable.  The depression is gone and I no longer have mood changes.  My energy is back and I enjoy life again.  I have the energy to exercise every day and my weight is back down.  My oncologist said that he hasn't had any other patients who have responded so positively, but I wanted to make sure I shared this with you in hopes that it may be an option for you.  I know that the acupuncture won't impact the uterine lining changes, but I am able to better handle the stress of regular transvaginal ultrasounds.  I have started experiencing joint pain and leg pain, but I am hoping that the acupuncture will help with it.  My plan is to continue on the Acupuncture while on the Tamoxifen and continue after I am done to help get my body back to normal.  I recommend that if you decide to try Acupuncture that you find someone who has experience treating women on Tamoxifen.   

    :-)

  • vmudrow
    vmudrow Member Posts: 415
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    Hello everyone I was just reading your posts.  I don't have BC, but my biopsy came back ALH and the oncologist wanted me to take Tamoxifen for 5 years.  I had heard from a few ladies that they hated Tamoxifen, but had to take it because they had BC.  I did not want to take it so I decided to have PBM instead.  Hearing your stories makes me think I made the right choice.   Good luck to all of you - I feel for you.

  • mahouna
    mahouna Member Posts: 2
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    i had stage 1 grade 1 ICd 12 years ago and never took tamoxifen. I was recently diagnosed with DCIS, had a lumpectomy not mastectomy and again will not take tamoxifen.  The SE effects are horrendous and to me it was like eenie, meenie , what cancer do I want, cervical, or BC. made no sense to me. Yes, i have DCIS 12 years later, but stage 0 cancer is cureable. I read The China Study and altered my lifestyle drastically and am absolutely convinced I can stop this from growing by what I put in my mouth. I had three nurses lean over me before surgery and said "they overtreat for DCIS, we agree with your decision." Honestly I am not convinced that the excessive radiation and glucose they injected in me on two failed MRI's didnt cause the DCIS. Since mine is microcalcifications, small dots of cancer. Glucose feeds cancer and in one week I was given an enormous amount due to an incompetent tech. Read the book, love to hear what you think....

  • whitedove
    whitedove Member Posts: 121
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    Learning much about Tamox here...told by dr. diet regimens were still inconclusive. 

  • rubyredslippers
    rubyredslippers Member Posts: 94
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    I refused Tamoxifen. I believe that it's not a good drug to take, and it doesnt stop BC from coming back. The studies and statistics are questionable and generated by the 'cancer industry' due to the large profits to be made. I to was given the scare stories and carry on by oncologists when I refused Tamoxifen - I find this appalling. I am so angry reading other womens stories here about being 'yelled at' by an oncologist for refusing Tamoxifen.  My oncologist had a similar reaction, and similarly felt that he was justified in glaring at me, and feeding my fears re recurrance. I had agreed to Chemotherapy - do they actually realise how gruelling and disgusting a process that is? Chemo by the way is optional as well. There are no guarantees that Chemo works and will stop anything - it's all a gamble and most things I've read about Chemo say it's not much more than a poison that destroys our bodies but there is nothing else at the moment as a viable alternative, so they just keep poisoning people due to a lack of alternative. I still suffer from memory loss and cognitive problems due to Chemo. I was not told about this potential side effect from chemo. It is only lately that I have found out that this is a common long term side effect from having chemo for BC - surely my oncologist knew this was a potential outcome of having Chemo? Surely it was worth warning me about. Im not saying it would have stopped me having chemo - it wouldnt have, however I find it questionable and appalling beyond belief that oncologists operate the way they do. We have a right to be informed of all the potential risks and SE's of any treatment they offer us.We have a right to make our own informed decision and refuse a treatment whilst being treated with respect. How dare they yell at us, glare or play on our fears when we make our choice? The drugs that are on offer for cancer are dangerous, serious drugs in that they have devastating and serious side effects - we should be being informed of these risks and told of all the potential risks and respected for our decisions. 

    I could have refused Chemo too, but felt I would go ahead with it as recommended as it was 4 months of drugs only and I'd recover from it - I feel that chemo, surgery and radiotherapy was enough. I did not want my life ruined for the next 5 years by taking a drug that is viewed as a carcinogen by many experts. I am not trying to scare anyone or upset anyone here...I am merely expressing my opinion on Tamoxifen, and why I refused to take it. 

    Tamoxifen is, from everything I've researched on it, a dangerous drug that ultimately does nothing but destroy quality of life. Where would my oncologist be when Im experiencing the depression, insomnia, angst due to weigh gain, pain, aches and so on...will she be thinking of me? Most likely not. It's easy to just say take this drug for five years when you havent got to consider taking it yourself. I find it disgusting that most women arent told all of the risks and potential side effects just told to take the drug. I also find it upsetting that so many women say "my oncologist allowed me a break"...how nice of him. I felt that as a young woman Tamoxifen was too big a burden to bear. I dont believe that if I have a recurrance that I would have been spared if only I took Tamoxifen. If Tamoxifen worked as the oncologist scare us into believing, no woman that had hormone + BC would ever have a recurrance or die from BC. That hasnt happened yet.

  • juli0212
    juli0212 Member Posts: 801
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    Relatively speaking, tamoxifen didn't cause palpable side effects (that I really felt), but damaged my retinas, increased my uterine lining by 4x normal, causing me to have to have biopsies every 6 months (so far, negative).  When I started Aromasin (aromatase inhibitor) in Sept. 2010, I started having a 'bit' of body aches, now the aches are unbearable.  I'm actually going to ANOTHER doctor, just what I did NOT want to add to my repertoire of physicians on my 'team'.  Tamoxifen is a double-edged sword, needed I truly believe, and I was told of the rare side effects that I did actually incur.  Don't know the answer here.  I'm 5 years out from diagnosis, and just can only hope and pray that I don't have any recurrences.  It's not familial at all (cancer).  S/E's from chemo just as bad, can barely walk due to neuropathy/bone density issues/degenerative disease in feet at age 52?  What's gonna happen at age 62?   So, yeah...one has to consider pros and cons...and the unknowns.  That's basically what I believe we've all pretty much done.  One just throws the dice.  Good luck to all...juli

  • soulswithin
    soulswithin Member Posts: 11
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    Tam has some recent significant stats that should give us all courage to continue it, or at least try it. But for now i have discontinued tamoxifen. I,m grade 3 also, Rubyred, and have days of anxiety because of going off of it. But i have doubts also of accuracy in tests and the numbers run by the doctors. No matter what we do its going to be one big crap shoot.;( i do agree that doses should be individual, not run by numbers. Most of these drugs are produced with little info on how much we need in our body, and to be productive they must be on the high dose side.



    Nikki, congrats on your accomplishment of 4 years on tam! Yes, i would consider that fantastic and sufficing. At some point we forget what we used to feel like as normal and quality of life is a big part of the decision. I am62 and feel all the treatments, especially chemo and tamox greatly adding the aging process by at least ten years. I think those of us with severe neuropathy from the chemo have even more physical problems that take a good deal of our previuos life away also. I may have handled this better if i was younger, dunno.



    Does anyone have any info on what happens after we go off the tamox? Like what changes in our hormones take place? I stopped six weeks ago and i feel like i may be producing more hormones than before? Not good! I wish we could combine hormone reducing with tamox, like femara does.



    At some point we have to make the road ahead guilt free, being proud of how we managed all this, and grasp some good life. I may try another

  • MRDRN
    MRDRN Member Posts: 177
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    Hi ladies

    Thanks for this thread.  I am sitting here listening to a terrible rain storm outside at 4 in the morning.  The symptoms are REAL and I so appreciate reading everyone's thoughts.  My doctor actually told me that there was only a 2 percent benefit in my case of taking a hormonal and even considered giving me some estrogen!  He didn't but stood by his one year post op recommendation of not taking a hormone blocker and I was fine with that and actually grateful.  

    When I was around my BC.org friends this weekend, I felt so supported and was amazed at how much better I felt than Idid in a LONG time!  If they read thisI hope they know how special they were tome this weekend.  Surrounding yourself with people who will supportyou is key togetting through this dx. At stage 1 I never thought it would be this hard, but when I read thissite, I know I am not alone and it WILL get better. It would be worse with a hormonal....in my case. I will take my chances....just sayin

  • juli0212
    juli0212 Member Posts: 801
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    soulswithin:  Are you pre-menopausal?  You said you stopped tamoxifen, so I take it you didn't start on an aromatase inhibitor (as I did, chemo-induced menopause at age 47)?   I would think that your hormones would be all over the place stopping the tamox if you haven't taken any other hormone drug, or you are not post-menopausal?  Just a thought as I see you say you are 62, but your docs had you on tamoxifen and stopped it with nothing else right now?  Best to you~~juli

  • GoddessP
    GoddessP Member Posts: 1
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    This is sooooooooooo contoversial.  In Europe women do not stop HRT with ER and PR positive breast cancer.  In America we do.  Post menopausal women on both sides of the pond take tamoxifen.  Statistics are not definitive for either side.  So I am continuing the HRT (Vivelle patch and yearly progesterone shot) so that I want to BE alive while I take five years of tamoxifen.  My oncologist is on board, as is my GYN, and surgeon.  

     PremPro is a BAD drug and is responsible for all this confusion over HRT.  There are docs on both sides of the issue.  Read the literature and decide for yourself.  Not one of my docs said no to the estrogen, but one did worry about the progesterone.  That one doc did not differenciate between progesterone and progestin.  There is a big difference and inability to understand that fact gave me great pause.  I no longer see that doc.

     I am having zero side effects from the tamoxifen.  Fact is I am betting my life on this.   

  • soulswithin
    soulswithin Member Posts: 11
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    Hi, juli, i finished menopause ten years ago. I assume the hormonal changes do happen when we go off a anti hormone drug. Have a doc appmt. Next week to discuss the changes i have chosen. I may go back on the tamox., but trying to get thru my daughters wedding with no ovary pain, no stiff torn joints, and less fatigue. I was unraveling there for awhile, and with my history i was worried about cervical cancer, more surgeries, and a torn stiff shoulder has caused me to give up my career which requires heavy equipment lifting. Hard decision indeed.



    Those new fifteen year tam studies are questionable to me. More discussion at my doctors office this coming week.



    Goddess, i am real curious if the new long term tam studies include women who are also on HRT.?

  • juli0212
    juli0212 Member Posts: 801
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    soulswithin:  Thanks for the info on your own particular case.  Gosh, you have a lot going on, congrats on your daughter's upcoming wedding--something to look forward to.  I hope also you have less pain, don't we go through enough?  

    I believe in Tamoxifen when you're pre/menopausal, and the aromatase inhibitors when you're shown on labs you've been post menopausal, which is true in my case (tamoxifen 3 1/2 years, even tho chemo-induced menopause shown for those years, then switch to aromasin last Sept.).  Tamoxifen really caused ALOT of problems for me (very thickened uterine lining--2 biopsies negative so far; permanent retina damage)...so we all have our own issues, I guess.  Aromasin is causing mega hair loss and mega bone pain, and I have bone density loss, just had another bone density today, will see what's up with that later this week.  We were discussing taking a bone drug last year due to 10% bone density loss in lumbar spine, but decided not yet...too young and controverserial subject on that one for sure.  I want more info from my docs on that.  Good luck again...juli

    ENJOY the wedding, you deserve it!  :)

  • Cat123
    Cat123 Member Posts: 47
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    I started Tamox in June.  So far, no major side effects but I have to say I have not been feeling great but I put that down to the radiation.  The side effects I have just read are scary to me.  Do the pros outweigh the cons in this case?  Do some women have no SEs whatsoever?  I started Tamox when I was halfway through rads and started feeling crummy and I have really thought it was due to the rads....maybe it is Tamox? 

  • soulswithin
    soulswithin Member Posts: 11
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    Juli thanx for the note here! I'll give you some of my newly pencil tight curls ok? ;) I still mostly wear my wig after 8 months! I look forward to going to San Francisco and be with my daughter, friends and relatives. Should be fun.

    It is hard to know what causes all our side effects, and I also think radiation and chemo may be 50% of it. It's been 7 months now since I was done and I still am not normal. Alot of fatigue plus previous problems. I have a feeling this will be my new normal, especially if I go back on a hormone treatment.

    I was disappointed today after a talk with my Oncologist who claimed ovary and endometrial problems have nothing to do with Tamoxifen. I kid you not!  She said it was non-existent. This really upset me,

    1. She was unaware of the REAL issues of treatments

    2. She insinuated that we "the patients" were not accurate on the symptoms, claiming it's totally unrelated. [demeaning, and also made me question her knowledge.

    3. Totally disinterested in any new studies or patient input.

    I have since been reading about the Ovarian incidences all night long. I find it incredible she is unaware of all this.

    I think I'm going to try Femara after the wedding.  Then if that makes me worse I will try the Tamox again. I've always felt it might be important to shut the estrogen down first, then do the Tamox later

    Heres an interesting take on Ovarian problems with Tamox

    http://jjco.oxfordjournals.org/content/35/10/607.full

    Gee, I wonder why we feel so all alone in handling all this overwhelming stuff!

    Take care everyone!

  • juli0212
    juli0212 Member Posts: 801
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    Wowwww on the oncologist and their 'denial' of the side effects of tamoxifen.  Guess what:  I now have 4x thickening of my UTERINE LINING due to (drum roll please)   :    TAMOXIFEN!!!   2 biopsies show negative cells so far, but the lining is not thinning even a year off tamoxifen and now on aromasin.  YESSSSSSSSSSSSSSSSSSSSSSSSSS   tamoxifen     causes........all KINDS of side effects...rare ones/common ones, you name it.  (oncologist and gynecologist both acknowledged that tamoxifen caused the thickening and the breakthru bleeding it caused after menopause). 

    Soulswithin, I never wore a wig and really preferred being bald!!!   My hair grew in like yours, tight curls, then got really straight, got a perm April 2010, and now my hair is curly again on its own!   Go figure, huh??  But yes, falling out due to aromasin.  Gotta be VERY careful not to comb it, just ease conditioner thru it in shower and out.

    Be safe everyone during this hurricane event....we are in for a bruising.   ~juli

    (Albany, NY)

  • soulswithin
    soulswithin Member Posts: 11
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    Good luck on the hurricane, Juli.

    Yep, we have been thru too much for ANY doctor to even hint we are making this stuff up.

    Lol the wig has become easier than the hair. I,ll probably lose some it anyway during Femara. Oh well will give the HR one more try. But if i get worse, quality of life will be a big decider for me.

    I really want to get my estrogen levels down, hoping the uterus wiil get back to normal with the femara. The uterine pain has subsided in 4 weeks off Tamox.

    Take care. Linda

  • NitNat
    NitNat Member Posts: 15
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    I'm not a fan of Tamoxifen! I started taking it when I was 29years old. I have horrible side effects and it really is effecting my quality of life. Come the end of this year I would have been taking it for 2years and then I have made the decision to stop! With that I am hoping my body has a chance to do what it should be doing and I can feel like a 'normal' woman in her 30's!! The vaginal itch, dryness, loss of interest in sex, mood swings, fatigue, hot flushes and irritability are just too aweful to continue with. The thought of feeling like this to make it to my 5year mark just makes me want to cry. It is not quality of life for me! I can empathise with Nikki and all the other women suffering with their side effects. It's important to do what is right for you! Good luck everyone with the path ahead..... 

  • soulswithin
    soulswithin Member Posts: 11
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    Hi nitnat, you are my daughters age, and i can,t imagine her going thru all this at such a young age. Bless your heart. I hope you can try one of the other drugs to at least lower the estrogen levels some. If it doesn,t workout, then at least you know you have tried your best! I figure i,d give one just one more try.



    These decisions are so tough to make at any age. I find it depressing that we go throuh all of this with a stiff upper lip, and are stuck with sucking it all up while showing bravery in having to decide our fate. All of this with no guidance or follow up care after all we have been through. Not to mention the doctors pressure to suck up side effects. I realize they really want to save our lives and thats where their heads are. It would be nice if we could question these drug treatments without judgement. We,ve been through enough.



    I keep being reminded of that subserviant feeling. The one where we are damned if we do, and damned if we don,t, and whatever we decide it may be wrong. At this point we have to just make a decision, and go out and enjoy whatever life we have left.

  • starbeauty
    starbeauty Member Posts: 106
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    Anyone trying myomin and dim to regulate estrogen and uterine issues?