Bottle 'o Tamoxifen

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  • stheresa987
    stheresa987 Member Posts: 24
    edited October 2012

    Hi Everyone

    I haven't posted in awhile. But several months ago I started having horrible pains in my leg (I have been on Tamoxifen since Jan.) my PCP took an x-ray and said I have arthritis. Told me to go to physical therapy. Then my whole family got sick with some awful bug. I went to the ER last Sunday. I had a blood clot in my leg that has now lodged in my right lung. They kept me for a couple of days and now I'm taking shots of Lovenox (thinner). Has anyone else had clots with Tamoxifen? My white blood counts were also very high.

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  • stheresa987
    stheresa987 Member Posts: 24
    edited October 2012

    One more thing. Has anyone taken Milk Thistle for your liver. Seems I also have a problem with the liver. I've heard that you should take it and I heard that it enhances the estrogen in your body?? I'm a little stressed right now



    Thanks

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  • heartnsoul76
    heartnsoul76 Member Posts: 1,648
    edited October 2012

    doxielover! Haha! Yes, that's the one! Wasn't it great and such a beautiful night? That one ranks as one of my Top 5 concerts because of how pretty the city skyline looked at night as the music drifted all around me. We just ran up and down the stadium steps and "relocated" several times!

    Jo - what a great picture and glad you had fun! I haven't tried one of those yet... not sure if I would like it or hate it. Everybody seems to like them, though. I don't know - I just hate to even talk about cancer.

    stheresa987 - I hope they have taken you off the Tamoxifen since it can cause blood clots! Sorry, I don't know anyone who has had a blood clot from Tamoxifen. Don't know anything about milk thistle, either, but if it can raise estrogen levels I wouldn't take it especially if you are off the Tamoxifen, which you should be. I heard Suzanne Somers say to take care of your liver, drink the juice of 1/2 squeezed lemon with a cup of hot water about 15 mins before a protein meal - two times a day. The liver is supposed to be great at self-repair so hopefully it will get better over time. I'm sorry things have gotten so complicated so suddenly. Please let us know how you are doing! 

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  • peg119
    peg119 Member Posts: 281
    edited October 2012

    One of the ladies on here (can't remember who since memory not so good these days) had a clot and had to come off tamox.  Hopefully she will see your post and respond.  You should definitely not be taking it since it can cause clots.  

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  • stheresa987
    stheresa987 Member Posts: 24
    edited October 2012

    Thanks ladies. Doctor still has me on Tamoxifen. I've been home from the hospital for a week. Started a new job Monday so haven"t seen the doctor yet. Just upset that I was told to go to physical therapy and instead it was a clot. I hope it goes away.

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  • stheresa987
    stheresa987 Member Posts: 24
    edited October 2012

    I bought some lemons today and will try that. Thanks



    Theresa

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  • clickhere4dawn
    clickhere4dawn Member Posts: 28
    edited October 2012

    I have Femara, Tamoxifen and another - I gave Femara 6 months, Tamoxifen 3 months and the A something I can't remember the name now - I gave 1 month.  I felt like a Mack truck ran over me every day.  I was so miserable I finally stopped.  My Doc wants me on one but can understand that I just can't stand the pain. 

    For the hot flashes Vitamin E works great for me.  I take 2 - 400 (1 in AM/1 in PM)  it helps my flashes greatly and my Oncologist says it also helps prevent breast cancer.  Can't beat that.

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  • heartnsoul76
    heartnsoul76 Member Posts: 1,648
    edited November 2012

    I don't know if I mentioned this already, but when I had that bad mammogram in August (the BIRADS 4), I went to see my oncologist before the results of the biopsy were back and she was freaked out about it. The first thing she asked, well kind of shrieked, was "Have you missed any of your Tamoxifen pills?". So, from that I gleaned that it is very, very important not to skip your pills!

    Today I had a follow-up with my BS for that mammogram and he has put me back on the annual schedule again - phew! I asked him if he thought an MRI, ultrasound or mammogram would be best for me and he said, without hesitation, "An MRI." I asked if he could order that for me next time and he said he would, but of course it depends on what the insurance company will pay for. I have a $5000 deductible so it doesn't matter to me, I just want the best results for my dense breasts. He said ideally, we should alternate mammograms and MRIs so that's the plan. Whatever I end up with, though, I'm so glad I don't have to do it again until next November. He did say the calcifications the mammogram caught in August would not have shown up on the MRI, though. I wish there was one perfect machine for this...

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  • Paula66
    Paula66 Member Posts: 1,728
    edited November 2012

    HnS why is it that the ONC shrieked at you like that.  You know that isn't right.  Even if you did forget to take a pill, you are human.  It's not like you did it on purpose!

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  • jo1955
    jo1955 Member Posts: 8,543
    edited November 2012

    I remember reading back a ways - someone asked the question about taking Milk Thistle for helping with liver problems.  I did read two articles that say it can help with lower cholestrol and help with some liver issues. The studies show  there is nothing conclusive to indicate how effective this supplement is..  However, for those of us with breast cancer it is a NO-NO since it can mimic estrogen.  Also, if you have had fibroid tumors or endometriosis you also should avoid this supplement.

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  • bgirl
    bgirl Member Posts: 538
    edited November 2012

    Tink, Thinking of You.

    Decided on Endo Ablation for now, just can't face hyster/ooph at the moment. 

    Jo as always you are a font of knowledge.

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  • jo1955
    jo1955 Member Posts: 8,543
    edited November 2012

    Jane - Since BC I take much more time to do research on anything and everything I hear or read.  They say "knowledge is power".  Unfortunately, I learned some of the things after the fact.  BC has taught me to no longer make quick decisions and to ask doctors lots and lots of questions and to explore ALL of my options.

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  • tinkertude
    tinkertude Member Posts: 2,047
    edited November 2012

    Hi Ladies

    Thanks Jane!

    It has been crazy here. I will probably be heading back down to Florida this week to figure out what is going on with my mom again. She has been in the hospital for almost a week with an infection they think is liver necrosis. Her prim doc suggested hospice but hospice does not provide the round the clock care she needs. She will not go into a nursing home or assisted living center. They will not release her until someone is at the house to get things set up, that someone being me. She is meeting with a new ONC tomorrow at the hospital. The old one was horrible he refused to call me back and answer any of my questions becasue I was out of town and needed to come in, I was jUst there met him and didnt get any questions answered . I told his office he may be a good doc on papaer butpart of being a good doc was good communication and that he did not have. He didnt even know what I wanted to ask me and told the nurs to tell me he wasnt callingme. I said that is unacceptable and we will be switching so hopefully the new one will be better.

    Not sure what is going to happen, I will not have internet while I am there bt will txt one of out Tammy girls and they can update you all

    love and hugs to all my Tammy sisters

    xo

    Maria

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  • bgirl
    bgirl Member Posts: 538
    edited November 2012

    Wishing your mom the best and sending you peace & good thoughts.  My dad's onc and PCP were fabulous - you are right ... it does help make a bad situation more bearable when they communicate well.

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  • jo1955
    jo1955 Member Posts: 8,543
    edited November 2012

    Maria,  Sure hope you can go down there and get things set up for your mom.  I would also find it unacceptable to not answering questions or being more invovled in you mom's care.  Sending big hugs to you sweetie.

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  • odie16
    odie16 Member Posts: 1,882
    edited November 2012

    Tink,

    Hope the new onc can get you some answers and help put together a plan for your mom. Sending heartfelt hugs and prayers... 

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  • chabba
    chabba Member Posts: 5,065
    edited November 2012

    Maria, Heartfelt hugs and prayers for you and your Mom from me too!

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  • pat01
    pat01 Member Posts: 1,005
    edited November 2012

    Hi ladies,

    Went for my annual visit to my GP recently, and he suggested I take some calcium and vitamin D.  So I went to the pharmacy, and decided to get a multivitamin (one a day for women 50+) - is this OK to take with Tamoxifen?  I never really take supplements, and wouldn't want to intefere with tamoxifens effects.

    also, any other recommendations for a multivitamin - this pill is HUGE and I gag each morning trying to swallow it.  I usually have no problem with pills, but this one is giving me a big problem.  I guess I just should have picked up some calcium supplements and vitamin D pills, but I thought the multivitamin might be a good idea for overal health. And now I have 100 of them!

    Thanks,

    Pat

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  • bgirl
    bgirl Member Posts: 538
    edited November 2012

    pat - usually a multi is okay, not a high dose of anything.  Can you break it in half?  If not there are chewable ones out there.   My MO was okay with it but said if you do calcium supplements take with meal at least 2 hrs from tami.  Calcium effects the absorbtion of many drugs not just tami.  A lot of the bottles do say this on them.

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  • mstrouble16
    mstrouble16 Member Posts: 198
    edited November 2012

    Well I went on October 22 for my Pet Scan and Ct Scan to get the clear margins, well got a call yesterday from the Oncologist, have to go back to the Surgical Oncologist today for more testing they found a suspicious spot on the left side now in a node in the armpit.  It was originally on the right with very little node involvement and now it's the left.  GEEZE Louise you would think after bilateral mastectomy, chemo and this nasty little white pill with all it se at least for the first one I would get an all clear, but noooooo....and my hair is just starting to look good....darn......I'm choosing to believe it's nothing more than scar tissue, until itherwise..........

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  • bgirl
    bgirl Member Posts: 538
    edited November 2012

    Mstrouble ... Don't panic   Had a pre-op MRI and it showed something in node on opposite side.  Been having 6 month follow-ups to watch it.  Now they think it is just a nodularized area in the node.  Sounds stupid to me, but they are going with B9 as it does not seem to be changing.  One more next week and hopefully all clear.  Good Luck!

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  • Paula66
    Paula66 Member Posts: 1,728
    edited November 2012

    Ok my sista's I know I've been away for a short while but I'm back and had to share some love!

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  • bgirl
    bgirl Member Posts: 538
    edited November 2012

    Paula, Paula, Paula  .... and it isn't even Friday  or  Manday!

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  • Paula66
    Paula66 Member Posts: 1,728
    edited November 2012

    Jane I've missed so many Mandays that I had to make up for it, lol!

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  • jo1955
    jo1955 Member Posts: 8,543
    edited November 2012

    Paula - You read my mind.  I was just thinking it was time for some eye candy.  My, my - my litte heart is fluttering - LOL

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  • heartnsoul76
    heartnsoul76 Member Posts: 1,648
    edited November 2012

    LOL, Paula, my little heart is a-fluttering, too! You're so good to us! So glad I saw this today, it definitely brightens my day!

    Jane - I didn't know that about calcium supplements. It's so great coming here and learning new things. It's like having the benefit of 1000 oncologists! I had almost gotten to the point where I quit taking calcium supplements because a few months back they said they can cause heart problems (something about too much calcium flooding your bloodstream at once - they were talking about 500 mg). So I finally got some lower dose calcium pills and just pop 1 or 2 per day, several hours apart. Of course, I also get some calcium in my diet so I hope it's adding up to around 1200 mg. But now I know to make sure I don't take it within 2 hours of Tamoxifen - boy that sure is a picky little pill, isn't it? You have to avoid soy, too, with it. And check your food - soy is in everything. Including Hellmann's mayonnaise, salad dressing, even Starkist Tuna!

    Mstrouble - I hope it's just like Jane says. When I read where you wrote, Geez Louise, I laughed out loud because I say that a lot lately. So appropriate! It seems like it's always something. Fortunately, all these little zingers usually turn out to be nothing, but I sure hate sitting on the edge of my seat so much. I'm ready to RECLINE for crying out loud!

    Tink - I'm so sorry you're having trouble with your mom's doctor. When you get a good one, they can help relieve your stress so much. So glad you dumped this guy and I hope the new one comes up with a good plan for your mother. Prayers going up for you and your mother!

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  • Maggs09
    Maggs09 Member Posts: 193
    edited November 2012

    Hi ladies,

    I'm just finishing chemo this week, starting rads in next few weeks. After a long debate between my onc and my thrombosis dr (I was dx with PE in May, right after my cancer dx), my onc decided to put me on Tamoxifen and tomorrow I suppose to get a prescription.

    I don't know if I am to start Tamox before, during or after rads, I guess dr will tell me soon.

    I will continue getting Lovenox injections for as long as I'm on Tamoxifen, (I've been getting them since May, even with blood clot no longer showing in my lung).

    Oral anticoagulants are not the best option for me because I don't have factor XII in my blood, and, although this deficiency doesn't cause any bleedings or other issues, it throws blood tests out of whack.

    I was wondering, IS ANYONE ELSE WITH RISK OF BLOOD CLOTS TAKING TAMOXIFEN?

    Please, share your suggestions and experiences.

    Part of me is happy about this decision, but I'm also very worried.

    Maggs

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  • bgirl
    bgirl Member Posts: 538
    edited November 2012

    Paula, this board has been really quiet. You sure no how to bring them out of the woodwork.

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  • stheresa987
    stheresa987 Member Posts: 24
    edited November 2012

    I just was in the hospital two weeks ago. I have a blod clot in the lung. It was originally thought to be arthur and I was told I needed physicial therapy for my leg??? I am now taking Lovenox twice a day. And they have now started warfarin as well. Pretty scary stuff. And to top it all off I just started a new job. So went to work today and was let go. With me being the breadwinner and now no income I can honestly say I'm stressed. Will it ever go right again?

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  • Maggs09
    Maggs09 Member Posts: 193
    edited November 2012

    Stheresa987, I'm sorry to hear about your problem with work. Please, try to stay calm and I'm sure another, better job will come along.

    I know how scary and frustrating is dealing with blood clots. My dx of pulmonary embolism right after cancer dx caused serious delay in breast surgery and therefore other treatments. They had treat clot first before anything else.

    Are still continuing Tamoxifen, along with Lovenox/oral anticoagulants ? Or did your dr told you to stop?

    Maggs

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