Bottle 'o Tamoxifen

I just want to say Welcome to all the newcomers to the Tamoxi-train!  Also, I want to tell you that this Tamoxifen is also "doable".  Yes, it has many nasty se's, but here's the secret ....

REMEMBER:  You can always try it and if you are having too many se's, then you can discontinue it.  You never know unless you try it...

Good Luck to all!!

Also, yawyaw:

I have started volunteering for American Cancer Society's Reach to Recovery and I am so glad that I did!!  It really does help to take the focus off ourselves, and think about others.

God Bless,

Harley

hi all - I have been gone a while....a convention for work and then last week to Ft Benning to see my oldest son graduate from airborne...We hadn't seen him in 2 years!  We had a wonderful visit...they got back to Germany early this morning. 

Still having flashes, pains and wondering if I have an ovarian cyst...this week is medical week

Prep for colonoscopy tomorrow, test on Tues and then my 3 month with onc on Wed....

Everyone have a great week...oh yea...I am on facebook too!

yawyaw! my son filmed the show for ABC Family the show is called Perfect 10, teen drama about the gymnastics world, we are just waiting to see if the network picks it up! such strange business as I am learning! If they pick it up, it will film in April and air in the summer, so fingers crossed! I still haven't got the results yet, my onc's office told me that there was a mix up between them and the hospital so it ended up getting lost in the shuffle over the holidays, I am hoping to get in within the next couple of weeks, the onc didn't seem too concerned, however I am anxious to find out so I have all my ducks in a row so to speak! I will keep you posted!! What was your score?

Lorraine

valeriex - congrats on finishing your 5 years of tamaxofin.  It's good to hear from those who have made it through the five years.  I agree with you - breastcancer.org is the place I go for information and support. 

The past week hasn't been a good one for sleeping - I've had alot of hot flashes.  I was so tired on Saturday morning and I had a full day of watching my son in a wrestling tournament.  I was up at 6:15 am to get his lunch/snacks packed, then I had to really motivate myself to get moving.  I am overdue for my period and that makes me feel a little tense.  I have a transvaginal ultrasound scheduled for tomorrow.  Not looking forward to that.

I go back for all my checkups (surgeon, rad onc, med onc) in March, and I'm going to talk to the med onc about the flashes.  I can't function with little sleep.  What medicine do others take to help offset the hot flashes????

My friend had her surgery last Thursday and is doing well.  She's back at work today and has her follow-up with her surgeon on 2/3.  Let's just hope her pathology report come back with good news.  They are leaning towards her having chemo, but will know more next week.

Sue-Blue - I used to take fish oil pills too, but they contain soy. And since we should avoid soy, I stopped taking them.  I did find multivitamins that do not contain soy, but that took me a while to find them.

Oh Sharon, I hope your spa cleanse went well.  (That is what I tell myself the prep is...) I'm sorry I didn't see your post until today, otherwise I would have suggested... well, I guess a good magazine or book.  Sharon, I've had an increase in the development of complex ovarian cysts over the last few months.  Onc thinks it is Tamox related and he's referred me to a Gyn. Onc.  I see her in early Feb.  I'll let you know what I hear.

Harley!  I love your pic!  It's good to see your face.

Murph, I'm sorry to hear about your flashes/night sweats.  Boy I can relate.  I tried Effexor XR for the night sweats with no relief.  I also adjusted the time I take the Tamox from late night, to early evening and then lunchtime with no relief.  I may try morning and then 1/2 dose 2x a day and see what happens.  I usually try to keep the same time for at least one cycle.  I do have a prescription for Temazepam, which is a sleeping pill.  I take one of these about every 5 nights just to get some sleep.  Last week i was working on about 12 hours cumulative over a three day period.  OK, so I was of no help, other than the suggestion for a sleep aid.  I guess I could have just said that!

Can we revisit the "cold flash" for a moment?  I'm getting these now (maybe due to my change in the time I take Tamox?).  I get cold, and a kind of electrical "zing" through my spine.  I wonder if this is what a hot flash feels like except I've got the cold end?  Does anyone else feel that zing?

Welcome to all the new riders, as well as those that are contemplating jumping on.  I was very sad when I boarded, but decided I would take things one day at a time.  One day is so much more do-able than 5 years.  Plus, I met all these great ladies.

Have a wonderful day ladies...  Choo, Choo!!

Barbie

I've been on Tamoxifen a little more than 3 weeks. I got a period, although I understand that some people go into menopause.  But then again, I nursed my daughters and got my period every 28 days even though everyone else I knew never had a period while they nursed.  So my question is, does everyone eventually stop having periods on Tamoxifen. I'm 54 and still have monthly periods with no end in sight.

My periods are lighter (Always used to be very heavy) and run about 5 weeks.  I was always regular, like clockwork.  I am 42 and premeno.  I have been on it for 4 months.

Hi, ladies I have been on Tamoxifen since Dec. 22 - I am not sure about my se's except for the hot flashes - I am definitely having them - I was on ativan for sleep during my chemo and rad treatment and then stopped taking it - did not realize that I was having withdrawal symptoms from it - that is why I am not sure about the tamox se's - glad I am off the ativan but went about 2 -3 weeks without a good night's sleep - I took ambien cr last night and finally slept - my onc said if the hot flash/night sweats get too bad he would prescribe lexapro - has anyone taken it and what about the se's of it? I am tired of popping pills to fix what another pill is doing to my body - you ladies who have been through the whole five years wow!! I hope I can stand it that long!

Also, I have also read where some people cycle off of tamox for 30-60 days has anyone's doctor done that with them? Just curious.

Kimmy1

That is interesting, about cycling OFF Tamoxifen for 30 - 60 days!  I have often wondered about maybe taking Tamoxifen for 3 to 6 months, and then switching to an AI for 3 to 6 months...  I guess I may ask my onc when I see him again.  Only one problem with this... he usually doesn't know.  Last time, he said what I thought he would in response to a question: 

"They really don't know..." 

UGH!!

Hugs

Harley

Traveler--my SEs (mainly mild hot flashes) started within the first 2 to 3 months.

Joann K--my oncologist said while on tamox, 25% will continue with normal periods, 50% will have irregular periods, and 25% will stop altogether.  Mine became very light and very irregular.  I took minipads with me everywhere just in case.

 I just finished up my full 5 years about 3 months ago.

Anne

Heat was off at work today and I was praying for a hot flash...came home at 3 to start the "spa cleanse"  Barbie you are funny....I have finished both bottles of the stuff....reminds me of about day 3 or 4 after chemo...but I think I am running faster to the bathroom......at least during chemo bad days we could eat....

Not complaining too much....my preventative mammo found my cancer....so I will always do these tests ontime!

To all the hot and cold flashers.....I am trying to think of it as my new normal....but they are discouraging sometimes....and the no sleep is annoying...Kimmy1 - I'm with you...I never took anything but a vitamin...now it seems I have tamox, fluid pills, and when I just get tired of not sleeping something to sleep...but again better than cancer!

Lorraine, I love those ABC family shows we can all watch without having the remote handy to mute or change channels at any moment. I hope it works out for your son.  My OncoDX score was 13. My Onc. said I would not really benefit from chemo. Worked for me!!

Sue_blue, I have a friend on Tamox. that has had problems with her nails, even nail fungus, I will ask her if she has found anything to help.

Barbie, I have only been taking Tamox for a couple weeks, but I have "freeze out" moments too! I thought it was just me. It almost makes my skin hurt. I am sure that will change to "melt out" moments soon.

Sharon, I hope your colonoscopy goes well....I'm sure your "going" pretty well by now    I just had that lovely experience too.  The actual test was a breeze (not the best word choice)!  Three of us girls went together (one to drive) and went for a nice lunch after.  Nothing like the horrors stories I had heard. We were a little drugged and pretty happy and fun to be around, but our driver was quite entertained and has sworn to never repeat anything that was said that day!!   That's what friends are for

Maggie --

The short version is here -- http://medicine.iupui.edu/clinpharm/COBRA/TamoxifenGuide.pdf

If you are more scientifically savvy and want more detail try here --http://www.medicine.iupui.edu/flockhart/

Currently the consensus seems to be that Effexor, Celexa, and Lexapro are the best of the bunch to use along with tamoxifen because they only weakly inhibit the cyp2d6 pathways. To make matters more complicated, there is some discussion about whether that pathway is the essential one -- that scientists don't really know which metabolites of tamoxifen are the important ones for reducing bc recurrance. This is just one more area in cancer treatment where there isn't a definate answer. My personal opinion? Stay on the Lexapro if it is working for you. If it isn't enough to do the job, try Effexor. But that's just my opinion.