This Tamoxifen sucks!

Will start mylan tamoxifen on Monday morning. I am anxious to see what happens! Happy Sunday to everyone!

LtotheK, I really liked your post of Dec. 29.  Sometimes when everyone talks about the bad SEs (Which is what the topic is about) but sometimes forget that most are lucky enough not to have to deal with the really crappy ones.  So it is good to remind nubies that they hopefully and likely wont have to deal with a lot of them.  I've been on it for three weeks and no SE yet.  crossed fingers.  But I am on Effexor so that may be helping.  I was on it long before dx and was happy to find out it was one that wouldn't antagonize Tmox.  No fun switching antidepressants!!  If I start having SEs I'm going to change manufacturers if I can.  That's hard to do as I get mine bymailorder through insurance. glad to join you Tmox sisters on this thread.If I start getting SEs, you'll find me on here in a hurry,  moaning and yelling that I can't go to the bathroom , that my booty is itching and I've gained 1200 lbs.lol   Praying that everyones SEs just go away and leave you in peace.  You all deserve better!!   Joyce

Teresa,

There are a few women who have tried the Budwig diet.  One is Leia, who did started it after surgery and remains cancer-free.  The other is chillipadi (I think) who started it before surgery and has had a terrible result (her words).  While the cancer has not metastasized, it has grown and has broken through the skin.  It's extremely painful and she is working on getting it under control, so that she can have surgery. Obviously, the two women have very different opinions on the efficacy of the Budwig.  Leia is a huge fan.  Chillipadi is not.  (For the record, chillipadi followed the protocol faithfully and to the letter for an extended period of time.  It did not work.)

I have researched a lot of alternative methods and the one that really failed to impress me was the Budwig, so I didn't incorporate it. However, there are lots of people who like it, I guess.   I think there is a yahoo group for it.

On my first Tamox try I had terrible side effects and with my MO's permission took a short break. During this time I saw a doctor at UCLA Simms-Mann Integrated Oncology. She gave me some herbs and supplements to help combat the SE's. I have been back on it for 4 months now and it is the difference between night and day- side effect wise. I hate being on this drug, I am trying to get to the 2 yr mark so I can re-evaluate but I think, if you can get to a place where the side effects go from all consuming to tolerable, it's worth it! Also, while I agree it is your body and you can do what you want, you should share your choices with your MO. My theory it is their (the doctors job) to keep you well, they can't fully do their job without all the information. Happy to share what I am on or my Int Onc doctors name if you would like.  

Kaara, FWIW I think starting off on a half dose -- or even a quarter dose -- is a pretty good idea. Some of the SEs I had when starting Tamox went away after my body adjusted to it. However, I'd bet that it's not necessary to do a half dose for several months. You could do a quarter dose for 2 weeks, then a half dose for two weeks, and then a full dose. In my personal opinion, based only on my own experience (plus being an opinionated person ), is that those 4 weeks will tell the tale.

Basically I'd just suggest trying some reduced dose and if you have negligible SEs, increase the dose. If you have SEs but they go away, increase the dose once they go away. 

jancie, I've definitely seen women on BCO who say they've experienced dizziness when taking Tamox. That's about all I can tell you. Have you thought about seeing if you could get Tamox pills made by a different manufacturer than the one you're taking?

jancie and Bren, were you taking the Tamoxifen from Teva? From what I've seen others say, it appears to be the least likely to cause the vertigo/dizziness.

I have been on the teva tamoxifen for almost 3.5 years. It has been 3 days since the mylan tamoxifen . I had the dizziness euphoria type of symptoms for the pass 3 years.

I completely understand that people about to start tamoxifen are worried about it.  I felt the same way and put it off for a few weeks gathering up the courage, but have been pleasantly surprised by the few SEs I have.  I feel for all of you who have bowel problems, dizziness and other unpleasant effects and I hope you find something that helps.  I'm also on TEVA, if it makes a difference.  I am so determined never to get this back again that I didn't even consider not taking it.

However: The only thing I've been noticing is some hair loss.  I didn't lose my hair during chemo (ice cap, miserable but effective!) but now, 6 weeks out of chemo and a month post-rads, my hair is drifting down like snow when I brush it.  There's a little mat of it in the shower drain every morning.  Very distressing - I thought I'd escaped this!  So far it's not visible and I'm hoping this just goes away as my body gets used to the drug or perhaps it's a delayed effect of chemo so I'm just going to wait and see.  Apparently minoxidil contains methylparabens so that doesn't seem to be an option so I'm trying biotin and seeing if that helps.  Does anyone know anything about this?  Thanks!!

Since I have opted out of rads, I now have to give serious thought to taking a hormonal therapy.  I'm already going through menopause at 71 after being taken off all my BHRT, so hot flashes are the new normal for me:(  

vettegal:  Yes...when I get up and then get back in bed I almost always have a hot flash!  Sucks...now I just automatically don't put the covers back on until it's passed!

Nobody told me getting old would be this much fun...lol! 

LucyL, yes, I believe I've seen some women here talking about hair loss during the Tamox treatment. 

Well after I said all that went to my onco and he asked me to please stay on taxomifen, so its back.  I have been on it and feel yucky but told him I would take it.  It has turned me into a roaring fool because I go back and forth so much with it.  For the time being I will do what he asked me to do but cant they just fix this, omg, breast cancer has been here since the begining of time.  Please forgive my back and forth, its the meds

jennifer1:  Have you tried taking a lower dose until your body adjusts?  Some on here have done this and reported better results.  Just a suggestion, but run it by your doc.  I would think half a dose is better than none.

ricia-your dr was wrong for starting you on tamoxifen before radiation was done! I have tried taking it in the morning and at night. The best for me was the morning with breakfast , you should take with a full glass of water!



Since I have been on the mylan tamoxifen I have notice some changes, I will post more on that tomorrow. Just spent most of the day doing our taxes whew!



Happy Sunday ladies!

I have opted out of rads so probably need something to protect me from recurrence.  I am post menopausal so could go with either tamox or al's.  Want something that does as little damage as possible to my system.  I am going to make an app't with a MO to see what it's all about.  In the meantime my holistic dr. has me on  low dose Naltroxene which is a super immune booster that helps fight cancer and kills them off, along with other supplements that boost immune system.

The new vaccines now being developed will work the same way...boosting the immune system, so it is important to keep it as healthy as possible.