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Bottle o Tamoxifen

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Comments

  • emath
    emath Member Posts: 18
    edited September 2008

    I have to tell you all, I have been reading the post and I am to start my Tamox tomorrow and to be honest I am getting scared here. I have headaches due to having 2 bones replaced in my neck a few years ago and to be honest I DON'T LIKE THEM! Also I have hot flashes and night sweats so bad that I can be held personally responsible for global warming! Getting them worse is not my ideal of having a GOOD DAY! I have never had pimples on my face either and this is not impressing me. I am also to start Effexor as well, taking 1 - 25mg three times a day. I do not sleep but a few hours a night now, how can a person cope and deal with things on less sleep? Five years of this.....are you kidding me? Please tell me it gets better!!!!  PLEASE!

  • ashaby
    ashaby Member Posts: 200
    edited September 2008

    Hi Everyone, I'd like to see what our husbands/partners would do if they took Tamoxifen!(Amber)

    Mine said I sound like an old woman. (I'll whup his old man butt!)

    Thanks everyone for kitty comfort. She is still limping, but going out and even jumping on my bed in the morning.

    I think it's almost time for another virtual party. Foliage in VT?

    xxxxxBasha 

  • amberyba
    amberyba Member Posts: 180
    edited September 2008

    Thanks Basha, that is a funny one. also so glad your kitty is doing well!

    Ellen, who knows, but you may have very little side effects...but you can always stop taking the tamoxifen if you decide...my motto is 3 months at a time...If my liver profile and gyn health stays up to par, I'll more than likely continue taking tamoxifen, but if either declines, I'll reevaluate whether my liver health is just as important as for fighting possible recurrence of BC. I don't want to develop live problems, the good thing is that the oncologist runs a liver profile every 3 months...

    God bless!

    Amber

  • emath
    emath Member Posts: 18
    edited September 2008

    This stuff effects your liver? Two weeks ago my blood work showed my liver enzymes high. So I had to have more blood work done with no ideal yet as to why. So, yesterday the onc order some type of scan and another test for my liver.

  • dash
    dash Member Posts: 173
    edited September 2008

    I have officially completed my first year on Tamoxifen! Woo, hoo! I can't believe it!

    The first few months were full of sleep deprivation and mood swings and depression...hot flashes, night hot flashes...but the worst was not being able to sleep! I think I stayed awake almost an entire week during all that. It was a nightmare.

    But now, I'm good. I take the tamoxifen anywhere between lunch and dinner with food for the best results. Food because otherwise, I start tasting a chemical taste and I try to take it a few hours before bed because it seems to give me a second wind of energy and I'd rather take advantage of that during a time of day that I feel tired. Hot flashes are milder and less frequent but I also think that has to do with an overall healthy diet and reg exercise

     Anyone struggling in the early months, give it some more time and see if your SEs don't straighten out, too. I was miserable and desperate for sleep last Fall. I just kept saying I can quit at any time and I would've if the symptoms hadn't improved.

  • tiff2008
    tiff2008 Member Posts: 31
    edited September 2008

    Dawn, I'm really sorry to hear about your migranes.  I have heard that the longer you take Tomox. the se's get better.  I've been taking Tomox. for 1/1/2 months now and having hot flashes & insomnia..that's about it.  I'd certainly talk with your doctor.

  • Harley44
    Harley44 Member Posts: 2,126
    edited September 2008

    Basha,

    Glad that your kitty is back, and feeling better!!


    Well, I gotta go to work...  I am still feeling kinda tired, even though I had a b-12 shot yesterday.  My neck is still sore, and has been for the past 3 weeks or so.  I don't know if I will need to go have that checked out, or if I should just leave it alone.  Do we always have to CONSTANTLY be getting all these x-rays and MRI's?  How DO you know if it is just a regular old ache and pain?

    Harley

  • amberyba
    amberyba Member Posts: 180
    edited September 2008

    Ellen, that is concerning to have elevated liver enzymes...I would ask for copies of all your labs and test results. that way you can monitor them yourself.

    Harley, hope you feel better soon, get some extra rest tonight. I am like you and hesitate to get my concerns checked out. I don't want to wear the doctors out especially if it is really nothing. My surgeon told me to always feel free to call if I have any concerns..he doesn't want me to worry...and worry/stress may not help the cancer issue...but everyday I think on these things.

    I have been aching as well Harley, but I didn't sleep well last night as usual. and I am lifting free weight with my arms. but my SNB site and rad boob ache off and on and I was pretty miserable this morning, I didn't take any pain meds and am just dealing with it. but the reason I am lifting free weights is because the lab had problems finding a vein and i bruised from the last stick.  I will have blood drown nest week to see if the iron is helping take care of the anemia.

    Hugs to all!

    Amber

  • emath
    emath Member Posts: 18
    edited September 2008

    I go Monday for a Nuclear Medicine Liver/Spleen scan and will also have more blood drawn too. Will be glad to know why my liver enzymes are elevated. All the hep test came back neg. so we know that is not the reason. Will keep you all informed.

  • Harley44
    Harley44 Member Posts: 2,126
    edited September 2008

    Ellen,

    Please let us know how your scan goes, and your blood work, too.  I'll be thinking of you, and hope all goes well.

    Amber,

    I hope your anemia is better.   Please let me know how your blood tests come out.

    I don't like to complain about every little ache and pain, but I have been having this stiff sore neck now for about 3 weeks or more.  I think it started on 8/17, so next week it'll be a month.  I also haven't been taking anything for it.  Maybe I should try something.  My dh thinks I am sleeping on it wrong, or doing something to irritate it.  That makes sense.  I just wish we didn't have to always think the worse, that these aches and pains were.... 'c'.  I can't even type it!

    Hugs,

    Harley

  • emath
    emath Member Posts: 18
    edited September 2008

    Thanks Harley. For right now I am buckling down for Ike. Making sure everything is put up out of the yard. Praying for all in Ike's path! Hope you all are safe!

  • Harley44
    Harley44 Member Posts: 2,126
    edited September 2008

    Ellen,

    Stay safe!  Are you in danger from Ike?  Will you evacuate?  Please make sure you have a safe place to go!

    Harley

  • emath
    emath Member Posts: 18
    edited September 2008

    All is calm before the storm right now. They are still unsure of where Ike is coming in as of this morning, but I live inland from Galveston by 45-50 miles. Near Montgomery county right on 45. They are saying we will have 4-6" of rain and winds of 60-80 mph here in this area on Fri night and thru Sat. I pray that the big bad wolf when he puffs and puffs, that my house made of brick still stands! LOL I am staying put here, have several animals and I will not leave them behind. So I sit and keep them safe and sound! Will be working all day outside securing things. ((((((((((((((((hugs))))))))))))))) and prayers to anyone in his path! Keep safe!!

  • tami48
    tami48 Member Posts: 270
    edited September 2008

    I started taking Tamox yesterday.  My Onco wants me to take 10mg twice daily for two weeks, then start taking both pills together.  I was on Arimidex for 6 weeks and had terrible se's, so I'm hoping the Tamox works without too many se's.  We'll see!

  • amberyba
    amberyba Member Posts: 180
    edited September 2008

    Harley, I'll get blood drawn next week...I believe it is better though because I have more energy. I would be worried about my neck if it hurt like that...you have been thru so much stress lately..my neck often hurts when I am over stressed...hey maybe you can try neck exercises (rolling your head from side to side and all around) and I use a heated herbal pack at night sometime...I am like you and don't like pain meds....but if inflammation is causing the discomfort, motrin may help. maybe at night you can take the motrin and apply the heat. and I find that if my pillow isn't working then I have achy neck muscles too. I will pray for you now.

    Ellen I will be thinking of you and hoing & praying  for your liver enzymes to go back to normal, I know it will be hard but try not to worry about Monday, today has enough worries.

    Tami, welcome to the Tamox train, I am taking 10 mg twice a day, I was taking the 20mg initially, and had even asked the onc if I could take it in divided doses..he just shrugged his head...but I think taking it in the first part or the morning and the early afternoon has been best for me. I don't have near as many hot flashes, especially at night, I was waking up with the room spinning and sweaty all over when I took it at night...then I was afraid to take it at the beginning of the day because I didn't want the room spinning while I wasn't in the bed..ha ha! Hey but I still wake up in the middle of the night...

    last night I woke up at 2am and 4 am...use the restroom and was able to fall back to sleep easily for the first time, I was extremely tired last night though and made my way to bed at 8:30p...my DH didn't quite understand. but I think my lack of sleep was just catching up with me.

    I put my resume in at 2 places today...I am a nurse, and I had heard the onc office staff talking that they were short on staff, so I put in a resume there. and also at a local nursing home where an elderly friend resides. The ED I did relief nursing in, hasn't needed me to work...they are revamping and just hired a slew of nurses....but it is stressful working there sometimes, so maybe the Lord is opening doors somewhere else.

    well, I leave you all with a most encouraging verse that I am memorizing.

    Johy 15:7  If you remain in Me and My Words remain in you, then ask whatever you wish and it will be given you.

    Hi to all: Basha, Lynn, Deb, Donna, Joan, Murph, Munchy, Pat & Tiff and everyone!!!!!!!!

    Amber

  • Harley44
    Harley44 Member Posts: 2,126
    edited September 2008

    Amber,

    My pillows are not very good, either... I wanted to go look for new pillows today, but instead, when I met my MIL for lunch, she said that her legs were hurting, and she felt tired, so we just went to Wal-Mart for a few things, and then back home.  Maybe tomorrow, I will drive to the Mall and see if they have some better pillows at J C Penneys.

    The neck pain was on the left side, but now it has moved to the right side... weird.  Maybe since it got better, it really IS just stress, so I will try some exercises, and try sleeping in one position and try not to flop around too much, but it's hard.  Where do you get the herbal pack?  I may try it, too.

    Thanks for thinking of me.  I'll be thinking about you, and hope your bloodwork will come out ok.  I had bloodwork on Tuesday, and I may call my dr. tomorrow, for the results.  They should have them by Friday, I would think.

    Harley

  • amberyba
    amberyba Member Posts: 180
    edited September 2008

    Harley,

      the herbal packs are hard to find....I found one at a mall during the holidays a few years ago, then another at I think BEd Bath & Beyond, they range around 20$ but are well worth it. my Kids used to fight over who would get to sleep with the first pack we had. it resembles a tube filled with beads that have herbs like lavendar in them. you heat it in the microwave for about 3 minutes and presto an instant heating aid, it stays heated for about 45 minutes, so it is perfect to sleep with.

    It is a good sign the pain moved from one side to the other, stress and sleeping are probably the culprit.

    Have a blessed restful sleep!!!!

    Amber

  • Harley44
    Harley44 Member Posts: 2,126
    edited September 2008

    Amber,


    Thanks!  Now I am not quite as scared... I've been alternating between being scared stupid, and thinking that it must be just that I twisted and slept on it wrong.  When I press on the back of my head, sometimes it hurts, and that scared me.

    I will try to find those herbal packs, and see if it helps.  Ibuprofen didn't really help.

    Harley

  • amberyba
    amberyba Member Posts: 180
    edited September 2008

    Harley, that's great. Hope you have a wonderful night and wake up pain free!

    Amber

  • pdb
    pdb Member Posts: 1
    edited September 2008

    Ellen - I don't normally post here but noticed you are undergoing tests due to elevated liver enzymes. I just went through the same process in the past month or so. I had a hysterectomy/ooph in March due to endometrium changes that I didn't want to continue to deal with. Switched from Tamox (which I had been on for nearly 3 years with no discernible side effects) to Femara. Because of the switch, my Onc was monitoring my liver function on a frequent basis and 2 of 3 liver enzymes went through the roof. They thought it might be the Femara, but stopping it for several weeks just resulted in higher enzyme levels. Went to a gastroenterologist, had dozens of obscure blood tests to rule out every know liver disease in the world. Then had a liver ultrasound. Turns out I have a nonalcoholic fatty liver - and tamoxifen is one of the causes. Had never heard of it in my 3 years on tamox....there is no treatment, other than the standard "maintain a healthy weight."

    Best wishes to you as you look for the answer to the elevated liver enzymes....and good luck with Ike.

     Stay strong,

    Phyllis

  • emath
    emath Member Posts: 18
    edited September 2008

    Thanks Phyllis. I have my bottle of Tamox, got it this morning. Due to Ike coming in, they had to order it and it did not come in until this morning. I have not yet taken any yet. I am waiting to take after I have my test on Monday (pending they have power). I am not a drinker and I lost about 30 lbs since Jan of this year, so I am down just a little to thin right now. But will keep you all updated later. ((((((((((((((((hugs))))))))))))))))))))

  • JapanLynn
    JapanLynn Member Posts: 211
    edited September 2008

    Mornin', ladies--

    I've been reading posts all week, but never had the time to really respond.  I love weekends!

    Sorry to hear about your pain issues, Harley, but sounds like you and Amber are getting to the bottom of it.  Who needs drs??  Just kiddin', but you know what I mean.  All good suggestions from Amber; I have a couple of others...you might try acupuncture if you can find someone good.  That coupled with a strong massage might just fix you right up and relax you to boot.  Hope you get some relief soon!

    Ellen, sorry about your liver woes...hope you get to the bottom of it soon.  Phyllis, I'm bummed to read your post...fatty liver caused by tamoxifen??  Great--something else to worry about.  And I love my red wine, too.  Dang.

    Basha, count me in for the foliage party!  This time last year--through mid-November--I was in suburban NY for radiation, etc.  Every day I would drive to my appt. on this two-lane road through the most colorful fall foliage I've seen since I left NC a hundred years ago.  It was just stunning and did wonders for my mindset at that time.  I've never been to VT...can't wait to take the tamoxi train there!

    Ellen, stay safe...Ike looks terrible.  I was watching the news last night, and on the satellite picture they showed he covers the whole gulf!  Let us hear from you as soon as you can after he passes.  Thinking of you and everyone else in his way.

    My beloved Gators have a bye week this weekend...they're 2-0, but looked pretty sloppy last week against Miami.  My NY Giants are 1-0.  Woohoo...this is my favorite time of year.  For the football fans out there...hope your teams win this weekend as long as they aren't playing one of my teams. :-)

    Virginia, Barbie, and all the others my foggy, menopausal brain won't let me remember...take good care!  Love you all...your support is so important to me.  Enjoy your weekend--

    Lynn

  • amberyba
    amberyba Member Posts: 180
    edited September 2008

    Ladies,

    I'm so excited, I just can't hide it, I'm about to loose control and I think I like it"

    HOW many of you know that song?

    Well that is how i feel tonight.

    every evening I have had breast hardness/swelling on the BC side and tenderness...tonight the boob is soft. and the only thing I have done different is that yesterday I added Niacin 50mg to the Tamoxifen 10mg/Coq10mg/flaxoil/ferrous sulfate(anemia med), twice daily....I have felt like running short spurts and I have walked my dogs several times today.

    I had read CoRN / tamoxifen work together(helping lipids stay normal)...the Co stands for CoQ10 100mg, R stands for  riboflavin 10mg. and the N stands for Niacin 50mg.

    I haven't been able to find the riboflavin 10mg, but the niacin came in 100mg and I broke the tab in half.

    Any way I am not sure if this is the reason for the change, but it really makes me wonder.

    Ellen and Phyllis, I have been reading about NASH too...my onc mentioned it (I believe) as a possible side effect...he ran a metabolic package prior to my starting the tamoxifen, the met pks measures the SGOT/ALT (liver function)....and he will recheck 3 month labs to see how my liver is handling the tamoxifen.

    I have decided that if my liver enzymes or any female things are abnormal, I'll stop the tamoxifen...I just hope every 3 month checks for the liver will catch any problems...I haven't been to have a gyn check since my lump was checked before I had dx of BC.

    Lynn it is good to see you are doing well....I hope school is great and your students are behaving.

    Harley hang in there...if the neck is swelling some ice may help, the reason I mentioned elevated temperature is that a stiff neck can indicate infection...rest is the key and hopefully the weekend you will get some R & R.

    Well, I feel so good I hope I don't stay up all night!!!!

    Hi to all you tamox gals...have a great weekend and to those near the "Ike", special thoughts...I am always checking the radar....keep safe & pray!

    Love and Hugs,

    Ambere

  • emath
    emath Member Posts: 18
    edited September 2008

    Amber,

    My onc ran the same test and said I was medeoker (not sure of spelling) but said we could try. As I stated earlier, I have not yet started and the liver enzyme are up there without taken Tamox. Go figure!! I think I will wait until I get this scan on Monday!

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited September 2008

    Girlies- I did go to LA for a few days...  It was an ok trip.  One of the people I was traveling with was kind of moody which was annoying...

    I got back on Thursday and took the day off on Friday so I could see my Dad...  We had a nice visit on Friday afternoon, and on Friday evening he passed away.  I can't believe it...  My heart is broken.  I know it was the right time, but I just wasn't ready...  I left him and he was good...  He even had his dinner...both my brothers were with him.  I'm so sad that I wasn't there...I got to the hospital after he was gone...

    Just wanted you all to know because you all have been amazingly supportive.  The wake will be tomorrow with funeral/burial on Tuesday...

    With a heavy heart,

    Virginia

  • Harley44
    Harley44 Member Posts: 2,126
    edited September 2008

    Virginia,


    OH, I am SO sorry to hear about your Dad's passing!!!  
    Sending BIG HUGS your way!!!

    Thinking of you,

    Harley 

  • ashaby
    ashaby Member Posts: 200
    edited September 2008

    Dear heart, Virginia,

    I am so sad for you, with you. I lost my Dad 27 years ago and still miss him. I found the memories became better as time passed and that comforted me. I send you all my love, Basha 

  • prayrv
    prayrv Member Posts: 362
    edited September 2008

    Virginia,

    May God Bless you and keep you during this sorrowful time.  I'm so sorry to hear about your dad.  I was able to see my father for a couple of days before he passed away suddenly 7 years ago.  We (hubby, 3 children) went down for the Thanksgiving Holiday weekend.  We left on Sunday and he passed on Monday afternoon.  I'm so thankful that we had the visit.  Keep your last visit close to you and don't dwell on the fact that you were not there.  You were there in your heart.

    Gentle Hugs,

    Trish

  • amberyba
    amberyba Member Posts: 180
    edited September 2008

    Virginia,

    thinking of you and know that this is a sorrowful time...Your dad gave you a nice visit before he left..I have friends who have shared similar experiences, of how their loved ones waited until after seeing their children, then passed on. A daughter shares a special bond with her dad!

    Hugs and love,.

    Amber

  • Barbie7
    Barbie7 Member Posts: 126
    edited September 2008

    Virginia,

    I'm so sorry to hear that your Dad passed away on Friday.  I've had you and your Dad in my prayers for a while now and I became worried when you hadn't posted in a while.  You know that all the gals here are with you in spirit and prayer.  Lean on us.

    Barbie

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