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Bottle o Tamoxifen

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Comments

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited February 2016

    I take my Tamoxifen in the morning and supplements at night. Mag citrate especially helps with muscle cramps. I have noticed increased cramping in my calves.

    Scottie

  • trvler
    trvler Member Posts: 931
    edited February 2016

    Has anyone figured out what to do about chills? I am not sleeping much at all. I have a heating pad ON me and I am still freezing.

  • MomOfTwins98
    MomOfTwins98 Member Posts: 44
    edited February 2016

    My chills were so intense but seem to be easing a bit - I get into bed with an electric throw - put it in the bed before I get in so it is all warmed up for me on the sheets (polar fleece sheets) - then get under the throw and under my covers which include a light blanket, heavy winter blanket and then my down comforter. The throw turns off after three hours, on its own, but have usually woken up, hot, and turned it off. Has worked for me. (not so much for my husband who is throwing it all on top of me as he is sweating) During the day, I drink lots and lots of hot herbal tea. I dont sleep well and never have so not pleasant but, trying to figure it out

  • superius
    superius Member Posts: 310
    edited February 2016

    Interesting about the 5 vs 10 yr. I barely getting started (Nov 1 last year) & couple of Ocno drug researcher friends already said to do 10yr if the SE are not too bad...

    The Chills are not as intense now, mainly when i wake up in the morning (my room is coldest in the house). I have a little space heater that i turn on before I get out of bed. & then I have a fan on my desk. LOL. since I have no S/O to worry about, I could have the heater on few minutes, then it got too warm & I turn on the fan!

  • ajbenefield12
    ajbenefield12 Member Posts: 9
    edited February 2016

    Hey ladies, question for you all. I stared my Tamoxifen in October and had hot flashes and night sweats all the time. It was not as bad as I thought it would be so i dealt with it and had no problems. At the start of the year I did Whole 30....so basically I could eat Fruit, Veggie and meat. No sugar, Beans, Dairy, grains. I loved it and felt great. After reading all these posts about side effects I realized that I dont have hot flashed or Night sweats anymore. Anyone else have this? Side effects just stopping? Should I be worried? Happy? Thanks!

  • Wendy3
    Wendy3 Member Posts: 872
    edited February 2016

    So I have been on tamoxifen for the last nine months and they figure it may be time for a change already... Bone scan today determines all.

  • robinlk
    robinlk Member Posts: 363
    edited February 2016

    In your pocket today Wendy!

  • ksusan
    ksusan Member Posts: 461
    edited February 2016

    ajbenefield12, my side effects come and go.

  • LovingIsLiving
    LovingIsLiving Member Posts: 89
    edited February 2016

    Has anyone heard of this?

    http://www.aacr.org/Newsroom/Pages/News-Release-De...

    Basically it's saying that sleeping in a dimly lit room (not completely dark) can cause tamoxifen resistance because of low melatonin production. From what I've read it's okay to supplement with melatonin but do any of you have experience with it?

  • trvler
    trvler Member Posts: 931
    edited February 2016

    This has been discussed here but my question would be how do they know it's from the light and not from not sleeping BECAUSE of the Tamoxifen?

  • trvler
    trvler Member Posts: 931
    edited February 2016

    Did melatonin help you sleep, Solfeo? How much do you take?

  • lala1
    lala1 Member Posts: 974
    edited February 2016

    I buy melatonin from Amazon that comes in a 0.3mg dose. My mom has been taking this dose for years and all of my docs said they'd prefer I start with the smallest dose possible and work my way up if need be. The small dose works for me. Recently I read that it's not good to take melatonin long term. Anyone else heard that?

  • LovingIsLiving
    LovingIsLiving Member Posts: 89
    edited February 2016

    Thanks for your response Solfeo. I might start with a small dose, like 3mg or even less and see how it goes. I have tried sleeping in absolute darkness but I *need* the window shades open when the hot flash sets in. And there is a lot of light that comes into the bedroom. Since starting tamoxifen the hot flashes have prevented me from sleeping all the way through the night. So I hope the melatonin supplements will help with that.

  • Springtime
    Springtime Member Posts: 3,372
    edited February 2016

    Melatonin did not work for me, had to opposite effect. L-Tryptophan is an amino acid that stimulates your body to make it's own Melatonin, and this works for both my husband and me. We use BlueBonnet variety, you can get it on Amazon.com

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited February 2016

    Lovinglsliv. . . I have taken melatonin for years and have increased from 3mg to 5 mg to help me sleep.

    ajbenefield. . .I have to avoid certain foods at night in order to sleep. Anything spicy or heavy increases my dry hot flashes. I have to eat b light bland foods for dinner or I don't sleep.

    Scottie

  • heidi s
    heidi s Member Posts: 398
    edited February 2016

    Wendy, wishing you the best with respect to your bone scans.

    I was prescribed Tamoxifen for ten years. My onc. Will change the meds when I reach menopause. It's to my understanding that 20mg is the standard dose

  • Occovegirl
    Occovegirl Member Posts: 14
    edited February 2016

    Hi Ladies I have been on Tamoxifen since November I did not have any hotflashs at first now I have them a lot and night sweats. I also did get chills sometimes. But that subsided. Now I have missed periods has anyone else experienced this? Muscle cramps come and go also. I just figure I would rather live thru the side effects than have another cancer.






  • TeamKim
    TeamKim Member Posts: 301
    edited February 2016

    Hi ladies -- So reassuring to read that others are experiencing some of the same SEs that I have, even after two years of Tamoxifen. I have had nearly constant pain in my right hip and along my right shin for about three months. At first Tylenol and Motrin helped, along with doTerra Deep Blue rub, but it has worsened, and at times the OTC meds don't help. Pain is bad enough to wake me up or prevent sleep.

    Today, out of the blue, my left hip and knee started hurting, along with my left thigh muscle. This afternoon, I was really hobbled by the pain -- felt like I aged overnight into an arthritic old woman.

    I have some Norco left over from my surgery in 2013, so I think I will take that tonight to see if I can get a good night's sleep.

    I am not scheduled to see my onco until April, when I get my Zometa infusion (which could also be contributing to these SEs). Is there any point in calling in the SEs? Is there a treatment that helps with the pain? Although I am post-menopause, I had osteopenia prior to BC, hence the Zometa and the Tamo rather than AI. I would hate to have to go off Tamo after only 2 year. So far I have been trying to tough it out, but now quality of life is affected.... Your thoughts would be so appreciated

  • MomOfTwins98
    MomOfTwins98 Member Posts: 44
    edited February 2016

    OccoveGril - Have had a very similar situation to you - I've really never had hot flashes (started Tamox on Nov 30) but had bad chills - the chills seem to be ending during the night and just now starting to feel warm...cant say they are hot flashes and Im not sweating but very warm. I had 4 periods from Nov 30 to Jan 13 and now nothing at all - had found cysts on right ovary during an MRI for something else so that was watched but went away. I get the pain but it subsides and still, no period. Then had rectal bleeding and ended up with Colonoscopy (I;m 49) and upper endoscopy - all good with colon, thankfully! So, the SE seem to change and come and go. As one writer here wrote, if I get a SE I wait a week or so and it usually goes away and goes on to something else. I have my MO appt on Monday so will go over all this with him. I developed an edema in breast after radiation now too so working with a lymphedema specialist PT. Then had a scare with small lump in other breast on Friday - was in yesterday for ultrasound and Mammo on that side...clear! Every step is difficult but one day at a time!!


  • lala1
    lala1 Member Posts: 974
    edited February 2016

    Occovegirl and TeamKim--I found great relief from bone and muscle pain with turmeric and ginger. They were suggested by my holistic doc and really did the trick. I went from hobbling around like a 90 year old arthritic woman and waking up in the middle of the night to walk around (that was all that would help the pain) to going to a gym and working out every day. My MO puts everyone on Osteo BiFlex which didn't touch my pain. He now suggests turmeric and ginger as an alternative after seeing how well they helped me. I also told my dad about them because he suffers from degenerative knee pain. Said he was up almost every night walking around trying to ease the pain and now he sleeps through the night. IMO, can't hurt to try!!

  • letmywifelive
    letmywifelive Member Posts: 303
    edited February 2016

    Hi lala1,

    How were you preparing turmeric and ginger for eating and in what quantity ? My wife is on tamoxifen and suffers from frequent hip and leg pain. Seeking for any relief.

    Thanks

  • Wendy3
    Wendy3 Member Posts: 872
    edited February 2016

    Letmywifelive tumeric is amazing and has taken all my pain away. I make two things with it. I seep on low heat for an hour sliced fresh tumeric with ginger until really bright yellow. Then take it off the heat add a little honey and black pepper ( the pepper make us absorb it better) let cool and mix into soda water , tastes like ginger ale . Or you can heat almond or cashew milk with grated tumeric and a little honey or algave syrup some cinnamon and star anis and drink warm. Good luck

  • lala1
    lala1 Member Posts: 974
    edited February 2016

    letmywifelive---or you can be like me and take it in capsule form because I hate to cook or even make teas!! ;) No seriously...per my holistic doc, I take Gaia turmeric (he likes this because it's natural made and local sourced out of NC) and any decent brand of ginger. I take one capsule of each once a day. He told me to start with this dose, take for one month. If pain doesn't decrease, up to two capsule twice a day. If pain doesn't decrease then they probably just won't work for you. My pain went from about an 8-9 on a scale of 1-10 to mostly a 1 with a few times it goes to a 2. This was just from one capsule of each! They are both 550mg capsules.

  • etnasgrl
    etnasgrl Member Posts: 185
    edited February 2016

    I finished up rads on February 15th. I met with my MO on February 17th. During that appointment, he gave me a prescription for Tamoxifen, however he told me to not begin taking it until 2 weeks have passed.
    I'm assuming to give my body a little break and heal up some from rads.
    So, that means according to him, I should start Tamoxifen on March 2. My period is supposed to start on February 28th. (I've stayed pretty much every 28 days throughout this whole ordeal.)

    Will it matter if I start during my period because I'm sure I'll be on my period on March 2nd or should I wait until my period is finished? Does it even matter?
    And have any of you waiting a week or so between rads and starting Tamoxifen? Or do you go straight from rads or chemo to Tamoxifen?

  • heidi s
    heidi s Member Posts: 398
    edited February 2016

    Etnasgrl, I can promise you that it will not matter if you start during your period. If you're concerned about this, call your doctor

  • etnasgrl
    etnasgrl Member Posts: 185
    edited February 2016

    Thanks hsant, I did ask him about it and he told me that it didn't matter. It's not that I don't trust his answer, I do, (obviously, or he wouldn't be my MO!), but I like hearing other women's opinions on this and see how things worked for them.

  • MomOfTwins98
    MomOfTwins98 Member Posts: 44
    edited February 2016

    Hi

    I was started in radiation and Tamoxifen in the same week! Started radiation on 11/23/15 and Tamoxifen 11/30/15 so no break for me. Since starting both of those, I had my period on December 1 for a couple days, one day period (yup, weird, only one day) on December 24 and then another on January 13 for a few days - that's it - have not had one since. Feel crampy but nothing so far. Started Turmeric tonight as I am not feeling well and hope it will help - seems to only have good benefits and spoke to the dietician at our Cancer Center - she said it is safe so no worries. May also try Magnesium but, if Turmeric helps, prefer to stay natural


  • TeamKim
    TeamKim Member Posts: 301
    edited February 2016

    Thanks Lala and Wendy -- I will give the Tumeric & Ginger a try. Be well, everybody

  • heidi s
    heidi s Member Posts: 398
    edited February 2016

    Etnasgrl, I apologize for sounding harsh. That was not my intention at all! Cancer is scary. Meds that go along with it can be scary, too. I find that my docs will talk me down from the ledge when I get overwhelmed, which is why I made that recommendation. Tamo has been around for over 30 years. It's one of the tried and true meds for estrogen related breast cancer. IMO, unless one has a (rare) debilitating SE, I'm a big believer in this drug

  • Occovegirl
    Occovegirl Member Posts: 14
    edited February 2016

    Hi momoftwins98

    Thank you for letting me know of your side effects also. I feel the same way some times side effects come and go .I just scheduled an appt with a gyno just to keep an eye on everything. I am so glad all of your tests came back with great news. It's great to know I am not alone and many women are fighting the same battles. I am 46 ans was diagnosed at 45.

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