Bottle 'o Tamoxifen

bcincolorado

Hi Grakenmom, sorry you have to be here, but glad to have you join us!

With leg cramps, I can tell you that quinine works to stop those.  My DH had horrible cramps before his transplant and the doc had prescribed pills for him.  Unfortunately the FDA said that docs can't prescribe "off-label" now for that but they said quinine is in tonic water....if you can stand the taste of it.

Chevyboy

Okay, thanks BC & Welga!  I'll try the prunes, And I could add the magnesium citrate also!  I DO take the fish oil with Omega 3.....

I haven't tasted the tonic water, but I know a lot of people drink it, with their "beverage of choice"     Thanks again....xoxooxoxo

CatbirdC

Chevyboy ~~   Just in case you missed it   ~~ 

have you tried the bar of soap in your bed for cramps ???   It worked for me and many others, but it doesn't work for lots of people too.  Anything is worth a try....and you don't have to INJEST it.  LOL

I can vaguely remember my dad taking quinine water or tonic maybe for his leg cramps....so that must have worked for him.

 Hi to all Tamoxitrainers !!!!!!

Bonnie

p.s.  anyone know where CS is ??? 

bcincolorado

Hi Tamoxifriends,

Hopefully CS is on a fun vacation or something like that.  May everyone have a "cramp free" good night sleep without the train running all night long!

KittyDog

went to be early only to be woken up with a hot flash.  Now I can't sleep.

Just a quick question for those who are using Mirlax.  What dose works for you?  I am taking colace twice a day and my oncologist wants me to give Mirlax a try.  I probably want even try it for a couple more weeks.  I have such a busy schedule with Physical Therapy I don't want to worry about having an accident.

joanneasiata

HI EVERYONE

Ive been taking tamox for about 4 1/2 mnths and for the last two weeks have had a constant headache, its only mild and i haven't needed to take anything for it but it is always there ,also i haven't had hardly any side effects from tamox Ive only had a few hot flushes ,i sleep like a baby for around 7-8 hrs no cramps just stiff elbows and fingers and my lower back is very sore that another constant pain, but any one else having headaches????

thanks

JOJO

Chevyboy

BC in Colorado.....That is pretty GOOD!...I mean about the "Tamoxitrain" and you said "the train running all night!"......  Man, ain't THAT the truth!  My dreaming is better, when I take the Tylenol Pm....But wish I could stop my one knee from hurting.  I wrap it, butter it, massage it, patch it, just can't figure out if it is bursitis or arthritis!  I hate to take anything for it, because of all the other stuff.....And we walk about a mile or so every other day, at the shopping center.  (Colorado Mills).... Other walks are shorter around our neighborhood.  But I can't hardly kneel anymore, or when I do, it hurts so much!    I go see the primary care next month, so I'll ask her.  Dr. Google didn't help me much there......

I'm trying to "get rid of stuff".......So many years of collecting, & holding on to, & never wanting to throw away "something special"....So I'll get my Daughter over here, when I get it all together, & see what she will take....then there's the neighbor, & the Shelter....  It is just such a JOB!!!!!!

And yes Catbird!  There are now 2 bars of soap under my sheet!  Hah!  And so far, no cramps! There is a LOT of information & ideas on the internet, about the "soap under the blankets"... So thank you!  So far, so good!   They also talk about strectching those calf muscles, etc!  But sometimes mine start up in my thigh! 

Okay gals!  Have a fun Sunday! xoxoxoxo

bichonlvr03

joanneasiata - I too was having chronic, mild headaches and then it occurred to me to check on the internet to see if tamoxifen could cause dehydration.  I found some things that said in fact it could and in the last few days I have tried to drink more water and clear fluids.  I have been on tamox. since April of this year.  The headaches I have been having do feel the same as those I would get when I was dehydrated.

CatbirdC

Hi Tamoxitrainers,

Chevyboy ~~  glad the soap is helping.  )  It worked for me too.

bichonlvr03  ~~  I've read quite a few complaints about headaches and think it definitely is a se of the Big T.

I've been a part of this forum for a little over a year and it's been my experience...as well as that of many others...

that we have these various side effects and thankfully in most cases they seem to stop on their own or with some of these great remedies we share with each other.

Bonnie

rgiuff

MMM67, loved your answers to SusieRed and agree wholeheartedly that the oncologists get so focused on decreasing reoccurrence risk that they may not look at the other health risks and discomforts that some of their therapies might be causing, especially ovary removal, very drastic and barbaric in my opinion for an early stage cancer.

Interesting about the 1 year of tamoxifen offering 30-35% of the total 5 year benefit.  How did your Onc figure that out?  And makes me wonder, if I were to stop in November after 2 years of tamoxifen, how much benefit would that give me?

bcincolorado

JoJo:  I too have headaches some days and somedays no.  Sometimes I'll get them in the night and they'll wake me up even.  I do take something, Excedrin Migraine, since I am prone to migraines and don't want it to turn into one.

June2268

Jo Jo I too had the headaches, really bad in the beginning and then they got better.  Now I seem to have gotten them back and I thought I was in the clear......I am hoping that they will disappear soon......I now have problems down below and I have gone in for an UTI test, ultrasound and now just treated myself with a 3 day yeast treatment and STILL not better.......I wish someone could tell me if this is a SE of the Tamox......I guess I am tired of hearing the doc's tell me that none of this is due to Tamox......I have lower pelvic pressure and feel like my crotch is going to fall off.......I just started month 5 with Tamox and thought to be lucky as I haven't had many SE......HELP!!!!

Chevyboy

Morning girls!   June....honey, I don't think that sounds like a SE of Tamoxifen!   But I think you have to tell your Oncologist just what you said!  You mentioned you have had a lot of tests, & nothing comes out of it?   Might be something else that has nothing to do with "THE Pill"....  I've been on it for 8 months, & never had THAT feeling...Yikes! 

If you gals want to read a link that will make you smile, or even laugh, try this one! xoxoxoxoxo

You know your a cancer patient when....

stoney

i started taking tamox jan 2010, two months after being diagnosed.

no side effects at all for the first two months since then it has been a slow fall.  naseau head aches leg cramps no sleep hot and cold flashes and exhausted ALL the time.  started taking the pill at night and that greatly improved my quality of life as the side effects came at night instead of during the day...for the most part they have all gone away, save the hot/cold flashes and fatigue.  tried effexor and one other med to help with side effects but they left me feeling like a zombie and didn't really do much to help with the flashes so i am back to only tamox.  i started cutting the pill in half and taking it morning and night, that seems to help with the fatigue, but it could just be in my head who knows...i have commited myself to just dealing with all of this and getting through my five years but what i never read anyone commenting on is the sexual side effect this pill has...or is it just me?  when the paper with the side effects said 'slowed sexual response' i wasn't sure what that meant...i have all but lost the ability to reach climax no matter what we do, my body may react but i don't really feel it almost as if i am numb.  i understand this is really personal but the only people who can answer this question are woman in my position, the onc can only tell me what she reads...i am interested in the experience of woman who are also taking this med. 

stoney

i started taking tamox jan 2010, two months after being diagnosed.

no side effects at all for the first two months since then it has been a slow fall.  naseau head aches leg cramps no sleep hot and cold flashes and exhausted ALL the time.  started taking the pill at night and that greatly improved my quality of life as the side effects came at night instead of during the day...for the most part they have all gone away, save the hot/cold flashes and fatigue.  tried effexor and one other med to help with side effects but they left me feeling like a zombie and didn't really do much to help with the flashes so i am back to only tamox.  i started cutting the pill in half and taking it morning and night, that seems to help with the fatigue, but it could just be in my head who knows...i have commited myself to just dealing with all of this and getting through my five years but what i never read anyone commenting on is the sexual side effect this pill has...or is it just me?  when the paper with the side effects said 'slowed sexual response' i wasn't sure what that meant...i have all but lost the ability to reach climax no matter what we do, my body may react but i don't really feel it almost as if i am numb.  i understand this is really personal but the only people who can answer this question are woman in my position, the onc can only tell me what she reads...i am interested in the experience of woman who are also taking this med. 

stoney

i started taking tamox jan 2010, two months after being diagnosed.

no side effects at all for the first two months since then it has been a slow fall.  naseau head aches leg cramps no sleep hot and cold flashes and exhausted ALL the time.  started taking the pill at night and that greatly improved my quality of life as the side effects came at night instead of during the day...for the most part they have all gone away, save the hot/cold flashes and fatigue.  tried effexor and one other med to help with side effects but they left me feeling like a zombie and didn't really do much to help with the flashes so i am back to only tamox.  i started cutting the pill in half and taking it morning and night, that seems to help with the fatigue, but it could just be in my head who knows...i have commited myself to just dealing with all of this and getting through my five years but what i never read anyone commenting on is the sexual side effect this pill has...or is it just me?  when the paper with the side effects said 'slowed sexual response' i wasn't sure what that meant...i have all but lost the ability to reach climax no matter what we do, my body may react but i don't really feel it almost as if i am numb.  i understand this is really personal but the only people who can answer this question are woman in my position, the onc can only tell me what she reads...i am interested in the experience of woman who are also taking this med. 

bcamnb

June - one other thread somewhere on this site talks about yeast infection and T. I am sure I had it a few weeks ago - treated myself with a generic type of monostat. It helped a great deal. I too have a great deal of vaginal pressure but have found out I have a bladder wall that has collapsed, and \I think my uterus is following suit. I am waiting for an appt with a gyne doc. There is no question T interferes with the estrogen in our vagina, uterus et al....

Stoney - I can identify with the sexual stuff - but now I'm dealing with the problems above - 'usual' sex won't be/isn't possible....what a pain this all is.....And here is where I really feel for our DHs. They can be SO patient....

C

June2268

Thanks ladiesI have called my gynecologist and my appt isn't until Sept 1st......guess I will have to wait 8 more days to see what the heck is going on down there.......told her all I have done and she doesn't feel comfortable having me see a nurse practitioner, so here I go again and wait, wait and wait some more.........off to bowl with the little ones and off to see my mom in the nursing home......have a wonderful night ladies!

Kate0574

Hello Ladies, I am happy to report that I have been on Tamox for three years today!!! wow, only 730 days left... I have a few suggestions on the SE.... I read that a lot of people ahve leg paid and some people say cramp, I also have bother... a bananna a day takes away the cramps, no more middle of the night cramps.... I still however have leg pain and stiffness when I sit too long.  I am 36 going on 80.. lol... I tested very low on my vitamin D levels so 1000.00 mil a day per dr orders even though you are not supposed to take many vitamins on Tamox as it lessens the effext of the medicine, very important!

I also still have the  crazy dreams but they are manageable.....Hot flashes only lasted the first year... and well, that is about it accept for the weight gain.. havent really gained much more that I did on chemo, I am happy and otherwise healthy.. whats good for me right now...

TAKE CARE ALL AND HUGGS!!!

cary1

I'm sure this topic has been covered, but I can't find it. I usually take my tamoxifen in the morning before leaving for work. But this morning I was traveling extremely early and was planning to take it on the plane, but forgot. So I am about 11 hours late. Should I take one now and then begin again as usual tomorrow? Or skip the missed one all together? 

micheleboots

Cary, it won't hurt to skip one every once in a while...I have missed a couple as well.

Stoney, I too take a longer time to " get there"  thank goodness my DH is a patient man.

Anonymous

Don't those questions always come up when you're not home and don't have the detailed instructions with you? 

The instructions that come with my Tamoxifen prescription say:

If you miss a dose of this medicine, take it as soon as possible.  If it is almost time for your next dose, skip the missed does and go back to your regular dosing schedule.  Do not take 2 doses at once.

You still have more than half the time left between doses, so following those instructions, take it now and then go back to your normal schedule tomorrow.

bcincolorado

Kate, congrats on another year down!  Woo Hoo!

MaryNY

Cary: I take two 10mg tablets of Tamoxifen daily - one in the morning, one at night. I use one of those seven-day pill boxes to keep track. Sometimes when I go to take the evening one, I find that I've forgotten to take the morning one. When that happens I usually split one tablet and take one and a half. You could split a table and just take half but I don't think it would be a big deal for you to skip one day.

DiDel

Hey Kate BRAVO on making it 3 years!! I can't wait to say that.

Question for you, you said we shouldn't be taking vitamins with T?? MY onc did tell me to take vitamin D, which I have been taking along with a multivitamin. Should I not be taking a multivitamin just the D???

Diane

iHEARTu

hello. Hope you don't mind I chime in...but wondering if anyone has spotting as a side effect? I think I had read it can happen. I just started 3 months ago...

-catherine

bcamnb

catherine - if I were you, I would be in touch with my doc to check out the spotting - it MAY be normal for you - or not.

Kate: I take 2000 mg Vit D, a multiVite, vit B, glucosamine, low dose aspirin,calcium (2/day) as well as the lowest dose of Prevacid. Vit D is extremely NB - none of us gets enough of it apparently and my doc has never seen a toxic level of it....

Cheers all,

C

Kate0574

HI Diane, Hope you are haveing agreat day.... I take the vitamin D and that is it but was told by onc if I wanted to also take a multi vitamin (a one a day) that would be ok but nothing else... I know not everyone agrees with that decesion or with my dr for that matter but he does not say much... but when he does give instructions i listen...."take your tamox, dont take vitamins unless you talk to me first and get your mammograms.... oh and how is the family and leg pain? get used to it" then we laugh... so with that said I do beleive in the vitamins counteracing the tamox mabe it is the levels of vitamins but I just refrain accept for the Vitamin D....

 Huggs ladies... have a great day!1

Kate

Joyce-PA

I am always reading but rarely post.  January '11 it will be three years since I started tamoxifen.  Not too many side effect but now a chest cat scan that I took for something totally unrelated to breast cancer stated that a portion of my liver appeared to be fatty.   Does anyone know if tami causes a fatty liver.  Going for blood work in 2 weeks to check my liver enzyme levels.

CatbirdC

Hi All,

I agree we each should follow the directions of our doctors since we chose them to make the best decisions for us.  And as we can see here they certainly do very in those opinions,

As for the leg cramps there is always the banana and the bar of soap.......

neither a medicine.

Catbird