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Bottle o Tamoxifen

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Comments

  • June2268
    June2268 Posts: 926
    edited January 2012

    Hi Linda so jealous so of the massage, I really need one of those.....miss you

    Jo congrats girl on your 1 year...yipee and you are so right as we never really need an excuse to drink.....ha ha

    Sherry thinking about you and hoping you find relief real soon.

    Sandee so nice to see you on here, we have missed you

  • Sherryc
    Sherryc Posts: 4,503
    edited January 2012

    Thanks all just talked to the nurse and the local MRI machine is down and they won't know till Monday if it will be up and running.  For those that have gone through rads you know how those machines can go down and do.  Anyway I called the Hospital where I have had all my BC stuff and they can get me in tomorrow afternoon so called the nurse back and Dr is off on Thursday afternoons so she will work on it tomorrow morning and hopefully I can get it done tomorrow afternoon.  Then I should have my results by Monday no later than Tuesday. Spoke to the tech and he was really nice.  Told him what was going on and he said with the MRI they can see the nerves, muscles, ligaments and bones so they should be able to see what is going on in there.

    LInda you deserve the massage.  I know I always feel better when I have them.

    Beebop when I first started taking tamox I had the stiff muscle thing going on.  I looked pitiful in yoga class. But it did get better. I am still stiff sometimes but nothing like I was before and who knows the stiffness I have now could be age related not sure.

  • achpurple
    achpurple Posts: 245
    edited January 2012

    I think we're all "big girls" here on this thread and I think anything that is bothering someone should and needs to be discussed so that hopefully someone out there has been through the same thing and can give some insite to the person who needs it.  We're all in this together!

  • Purl51
    Purl51 Posts: 174
    edited January 2012
    EmbarassedTook my first Tamox last night.  Reading all your posts gave me the courage after staring at the bottle for three weeks.  My Onc put me on Gabapentin for my hot flashes a couple of months ago so forward I (we) go.  I was pre-menapausal at diagnosis, have stopped cycles since 4/11 surg/chemo.  Onc said to wait a year and then I will be considered post-menapausal if cycles do not return.  I'm 51, so I doubt it (?).  Thank you all for your openness and honesty.   And humor!!     
  • cycle-path
    cycle-path Posts: 64
    edited January 2012

    Gabapentin for hot flashes? Is this a normal thing? I looked it up and it sounds off-label to me. (Not being judgmental, just curious.)

  • Purl51
    Purl51 Posts: 174
    edited January 2012
    Cycle-P, I know, sounds odd, but if you google "gabapentin for hot flashes" you'll see some articles and apparently my Onc has had good results with her patients.  After I'm out a few weeks on Tamox, I may wean off gaba to see how I feel.  I have woken up only a couple times a night feeling a hot flash as opposed to 4-5 before taking it. (?)  I can't explain why I would "immediately" begin taking a seizure medication for hot flashes and "Tamox" I waited weeks before beginning.  What a journey.
  • Paula66
    Paula66 Posts: 1,572
    edited January 2012

    cycle path yes its a med for hot flashes as well.  It didnt work well for me SE wise that is so I stopped taking it.

  • cycle-path
    cycle-path Posts: 64
    edited January 2012

    Thanks, ladies! Good to know. I just get such interesting info here all the time. 

    As I've mentioned on one thread or another, right now I'm trying black cohosh for the hot flashes. Just started yesterday, so it's too soon to tell anything. 

  • slinky
    slinky Posts: 166
    edited January 2012

    Today is my Cancerversary! 

    I cannot believe it has been one year since the worst day of my life - finding out I had cancer.

    I just started Tamoxifen, again.  I hope it works out, because I found Tamoxifen has the least side effects - for me, anyway.  Less joint pain.

  • Ceeztheday
    Ceeztheday Posts: 246
    edited January 2012

    Jo congrats on 1 year! We never really need an excuse to celebrate. Woo hoo.



    slinky- Happy Cancerversary! Time really does go by, doesn't it.

  • Paula66
    Paula66 Posts: 1,572
    edited January 2012
    slinky congrats on 1 year!!!
  • tinkertude
    tinkertude Posts: 1,998
    edited January 2012

    Slinky... congrats on your one year!!!

    Sherry so sorry to hear about your neck still hurting. Will be thinking of you and hoping and praying they are reolve it for you soon

    Paula... it is a good question. I cant help unfortunelty . I have no feeling in either breast. I had a bilat masect with DIEP reconstr and one newly constructed nipple so no feeling there either

    Jo.. miss you too

    Junie thinking about you

    Welcome all new Tammy ladies

    Hugs to you all

  • Panmars
    Panmars Posts: 166
    edited January 2012

    Congrats on 1 year, slinky!

    Good morning, tammi ladies! Is it too early to start a pillow fight?Tongue out

    Hugs to all 

  • Sherryc
    Sherryc Posts: 4,503
    edited January 2012

    slinky congrats on your one year cancerversary!!!!!!!!!!!!

    Jo one year on tamox wow SmileCry Don't know if we should be happy that you have one year down or sad that we even have to be here and take this crap, haha.  I think I'll take the glass half full today and be happy that is it one year down and 4 more to go.

  • jo1955
    jo1955 Posts: 7,545
    edited January 2012

    Sherry - My preference would be to not have to take this drug at all.  But like you said, I will take the glass half full.  Laughing

    Slinky - Congrats on the one year cancerversary.

                            

  • Purl51
    Purl51 Posts: 174
    edited January 2012

     Paula - can I ask what your sides effects were using Gabapentin?

    Yes, Happy Cancerversary Slinky.

  • Sherryc
    Sherryc Posts: 4,503
    edited January 2012

    Finally got things lined up for my MRI of my neck it will be Monday afternoon.  My gut tells me it is something soft tissue or disk but my mind can't keep from going to the dark side and wondering if this horrible pain is cancer.  I guess that is something that we all do so trying not to think about it but that is hard when I am in so much pain. I'll try to keep busy over the weekend.

  • Sherryc
    Sherryc Posts: 4,503
    edited January 2012

    Well more news.  My PS office called today and we have my BMX with TE's scheduled for March 20th.  It seems so real now.  I have done so much research and feel really good about my decision but I am not good at waiting.  Still have to have another breast MRI at the end of this month to make sure everything is OK from my last surgery/scare a couple of months ago.  Hope all that turns out fine so I don't add one more dimension to this.  Hope everyone has a great weekend.

  • Jules59
    Jules59 Posts: 148
    edited January 2012

    I called my MO's office early in the week and told them the joint and muscle pain in my arms and shoulders has become ubearable.  I am not a sissy or a wimp when it comes to pain, but I was unable to function normally, and the pain was getting progressivly worse, with no sign of leveling out.  I could take the hot flashes depression and consipation, but not the pain.  Long story short, they told me to quit taking it immediately, and if I dont see improvment in a week, I'm to come in to the office pdq.

    I guess we'll revisit the subject during my normal visit on Feb.10.  I'm 52 and haven't had a period since right after my first TAC infusion in March 2011.  I'm wondering if he'll try to switch me to something else?

  • Linda-n3
    Linda-n3 Posts: 1,713
    edited January 2012

    Jules, I had similar problems about a year ago when I started tamoxifen and quit taking it.  It took about a month before it got out of my system and I felt better.  Then I had recurrence, so am back on it.  This time I started out very gradually, increasing the dose over 3-4 weeks to get to full dose, and I didn't have the severe problems.  I do still have a lot of pain and fatigue, but it is not as bad as it was.  I am 58 but my hormone levels indicated I am still "peri-menopausal" so the AIs are not recommended, but my MO said she might want to switch me in a year if hormone levels show menopause levels.  Good luck.  Remember there are risks and benefits with every treatment and drug, we just have to individually go with what is in our own heart and values. 

  • Linda-n3
    Linda-n3 Posts: 1,713
    edited January 2012

    Aletha, I was on gabapentin for chemotherapy-induced peripheral neuropathy, and had lots of SEs, but it seems I am pretty sensitive to lots of these drugs.  The gabapentin made me feel foggy and drowsy, and I couldn't carry on a conversation, write or give lectures because I couldn't think of the words I needed.  As far as hot flashes, it didn't seem to help with that, but I can't remember a lot of what happened during that time.... I do seem to have had lots of changes in the HF area, seems to get better, then worse, then better, so not sure what that is all about!

  • Sherryc
    Sherryc Posts: 4,503
    edited January 2012

    JUles I had alot of left hip joint pain in the beginning.  so much so that my pain dr put me on Celebrex.  I had to quit walking for a month or so and it finally quit hurting.  I had to stop taking it when I went on the steroid but finished with in on the 2nd so decided to not take the Celebrex and see what happens.  Well the pain in my hip has not come back but the inflamation feeling in my radiated breast came back today so I'm starting the Celebrex again tonight.

  • Jules59
    Jules59 Posts: 148
    edited January 2012

    Linda and Sherry, I'm hoping my MO will work something out for me, because as I understand it, i have a 10-15% chance or recurrence at this point.  I know Tamoxifen would be beneficial for me (although my tumor was only 16% E+) so I'd really like to be able to take it.  If he recommends I go back on, I might try slowly increase my dosage like you did, Linda.  Thanks for sharing your experiences, and sorry to hear you have a recurrence.

  • Kay_G
    Kay_G Posts: 1,914
    edited January 2012

    Jules, I am glad you called your MO. It sounds like you have a good chance of restarting without getting the SE's, based on the other's experience. Did your onc test your hormone levels? I guess there are alternatives, but you must be post menopausal to switch to one. I am going to ask my onc to check my hormone levels. I will be 49 on Sunday. I think I'd prefer to take an AI than tamoxifen.



    Let us know what the onc says.



    Good luck with the surgery and getting rid of your pain Sherry. You have been through a lot, you're due a break. (((hugs)))

  • Paula66
    Paula66 Posts: 1,572
    edited January 2012

    Athena I felt like I was stoned all day long.  I couldnt stay focused on anything at all.  It was a nightmare for me.  It took me forever to do simple tasks that I had done on a daily basis.  It was during inventory and I couldnt even remember the parts.  Let alone read and focus on that too.  I stared at a tape measure for what seemed like minutes until I remebered what I was doing.  Not good when you have rows of metal parts to inventory.  I gave it up after one day of taking it.  There is no way I can do what I do and take that stuff.  I was even freaked out driving home. I know it effects everyone differently so this may not be the case for you.  I hope it helps you better then it did me!

  • Jules59
    Jules59 Posts: 148
    edited January 2012

    Kay, they didn't test my hormone levels, as I wasn't menopausal when I started chemo.  The original plan was for me to stay on Tamox for 2 years, test hormone levels and switch to an AI if I was ready.  I since I haven't had a period in almost a year, maybe they will test an switch me.  It will be interesting to see what they suggest.  I hope something can be worked out for me.

  • Linda-n3
    Linda-n3 Posts: 1,713
    edited January 2012

    Paula, you really described the gabapentin experience better than  I did!  And you are right, there are a lot of people who do well with it without the SEs.  And I didn't get SEs the first week or so, but I started with 100 mg a day and worked up to 300, then slowly started to go up to full dose, but never got to full dose due to that "stoned" feeling, etc.

  • Jules59
    Jules59 Posts: 148
    edited January 2012

    Linda, can I ask a couple of questions?  How long a period of time was it between the time you quit Tamox, and then went back on it?  Also, did your doctor recommend slowly increasing the dose, or did you figure that out by yourself? 

  • tinkertude
    tinkertude Posts: 1,998
    edited January 2012

    I also did the inroducing it into my system slowly after I stopeed it for awhile and it did help and also splitting my dose helped alot too. I stillhave se but they are managable.

    Went to the eye doc for a reg eye exam and he did a couple of tests that he said were recomended for women on Tamxifen. An field of vision test for glaucoma and he dilated my eyes and checked my retinas said he would do this every year now.  I was glad that he was up to date on information and knew enough to do all that.

     Sherry... It is hard not to go to the dark side we will help keep ypu bright and of course will be there right with you!!!! hugs

    Hope everyone has a great weekend

    Maria

  • jo1955
    jo1955 Posts: 7,545
    edited January 2012

    Good Saturday Morning Tammi Babes!

    Been really busy at work and have had to time to post. I do try to at least read what is going on but some days it is difficult to stay caught up.  I have had so much joint and muscle pain lately.  I don't know how much of that is because of the Tamox and how much is due to my arthritis and the cooler weather.  I have decided to go off the little white pill for the next couple of weeks and see if my pain improves.  No, I have not asked my MO and am not going to.  I don't think he would approve unless I went in kicking and screaming.

     Also, the stabbing/burning pains are back in my BC boob with a vengence.  I have an appt with the pain specialist on Tues and hope he can tell me something positive.  I am thinking my body has adjusted to the amitriptyline and it is not working as well as it did in the beginning.  I am also seeing my BS the following Tues and he is planning on doing an MRI.  Just when I thought this crap was behind me - does it ever end?  Sorry but had to vent a bit - this is frustrating.  I was hoping to keep my calendar clear until my routine family doctor appt in March.