Start Tamoxifen-April/May 2011

TonLee - I have to say I am still kindof shocked that your ejection fraction went down below 50%.  I  know you are an athlete and take such good care of yourself - just wanted to say that it sucks and that from all I have read about herceptin and heart function it should rebound.  I also read that some women take an ace inhibitor and that can help.  ((hugs))

Hi Everyone,

 Thought I'd throw my two cents in.  I've been taking Tamoxifen since the beginning of July.  Initially I was extremely bloated, but that seems to have settled down.  I was also getting crusty eyes, feeling like I had sand in my eyes, but that's also subsided.  I had an eye exam scheduled anyway and my optometrist was insisting that it was just allergies, but I've never had them before and the crusty eye totally coincided with the Tamox.

 And then...the hot flashes.  They happen frequently at night, waking me up.  I feel so gross at that point, sweaty, I can't get back to sleep.  They also happen when I am doing cardio at the gym, weird right?  They have been a constant and don't seem to be getting better.  Speaking of cardio, I started working out, going to the gym 4x a week since I ended my radiation.  I haven't lost or gained, so it leads me to believe I would have been one of the unfortunate people who would have gained weight.  Figures, I look at food and gain weight!

Memory loss.  Some days I stand in the shower wondering if I've already washed my hair!

 And finally....abdominal spasms.  Not pain, spasms, fluttering.  It's happening a few times a day.  I went to my gyn and she freaked because she thought I was pregnant (I'm 41 and was forced to stop taking my birth control pill).  She knows my deal, I've never wanted children, so she asked me if she should scream now or later.  I have been getting my period, so I knew that wasn't the case.  She checked me out and couldn't find anything wrong, so I'm not sure what's up there. 

I'm sure I'm forgetting something (memory loss!).  I haven't had any joint pain or constipation, but I'm sure that's on the horizon.  Five years of this, really?? 

Now, back to....what was I doing again? 

cantgarden-Just a thought about your abdomen "flutter". I experienced this in the past when I changed my workout to include more abdm/core exercise. I also experienced ab muscle cramping that caused me to stop what I was doing. Perhaps if you are fairly new to your gym/cardio routine, it could be a sign of your abs getting in better shape, which cardio should help with. This was all pre-BC for me

I CANNOT DEAL WITH TAMOXIFEN... UUUGGGHHH....

everything... it is the worse... uuuggghhh

TonLee:  so MagCit is not habit forming?  I think I'm going to try it.  Stress has that magical effect of shutting me down! So frustrating!

I'm definitely going to pick some up.  I started a new job and I feel like my stomach visibly bloats by the end of the week!  I also just read that black tea can cause constipation...and I'm drinking two cups a day of regular and one decaf, and that's just so I get away from my desk.  So I'm going to pick up some herbals and some mag cit and see what happens. 

kathyob...give yourself a break.  It took me 37 years to understand how estrogen could wreak havoc on my system, and now every cell that's expecting it doesn't get it.  I've labeled everything that doesn't quite jibe with my pre BC self my "cancer crazy"  I'm not a doctor, but I honestly feel diet exercise and sleep (which is my biggest struggle) are huge crazy minimizers.  I also meditate with a wonderful circle of women once a week.  Try bringing some calm into your world...I'm certain you'll be better for it!  I find it helps me breathe through my crazy

TonLee-I'm trying to get my ovaries shut down with either Lupron or Zoledex. My MO said he will only do this with a recommendation from my GYN(next week appt). Just want to make sure that you realize that the premenopausal women in the Austria Zometa study had ovarian suppression with Zoladex in addition to Zometa.

My period was light for the first 4 months, now it's as if a dam has broken loose.  I'm going to my OB too...I don't know if I could do an Ooph, but I'm considering an endometrial ablation, as I have issues with uterine fibroids.  I just don't think I'm brave enough to have everything taken...There are greater side effects long term with bone loss by not having the estrogen, that could some day kill me.  An odd quandry.

TonLee~

Thanks for starting a new Tamox thread -- the other is longer, harder to get through - but I'm about to make this one longer

GirlFriend~ 

I had a uterine ablation 6 years ago, and had a great outcome.  Never had probs with periods all my life, but started the flooding thing, so OB/GYN suggested the ablation and glad he did.

All~

Before being dealt the cancer card myself, I had heard that Tamoxifen was only prescribed for five years, and after five years of diagnosis knew women doing the fist pump that they'd reached five year mark, ended Tamox, and basically cured.

Now my med onc (Mayo Clinic) is telling me five years on Tamox, and then another five years switching to Arimidex.   So now new BC patients have TEN years of dealing with this crap?!   My other local med onc also said 10 years (switching from one to another).

So are you all also being prescribed TEN years???

I see Mayo med onc again on January 16.  Hate to tell him that I've not twisted the lid off my new lower dose Tamoxifen bottle yet.  He knows I've been beat to hell from chronic pain from surgery complications (with another one coming up in April) and radiation, can't get over a "flu-ish" feeling, and that I have on and off chronic angina from a rare heart condition (heart being reason for going to Mayo in first place a few years back, as I just have garden variety Stage II breast cancer). 

In August, I started Tamox for 10 days, and then Rad Onc discontinued it during course of radiation treatment as she does for all her patients.  I was so happy to hear rad onc say those words because I was taken by surprise and not happy about the extra helping of hell dished out to me from the Tamox. 

I threw up the first day of taking it, and then by taking it at night only had nausea.  Then about day 5, another SE developed -- SEVERE deep muscular/skeletal pain in hips and knees, and could barely walk.  I had just started getting back into walking routine for all of one week (quit running after first heart attack), when I started taking the Tamox 20 mg.  Tamox put an end to walking - I was so pissed by the third straight day of intense pain, that I made my son walk me down the street and back because I was determined to not let Tamox rule me.  Then I cried even more because I'm so pissed that this is the street I've lived on for 24 years, and that 17 years ago I was running down it with my baby son in a jogging stroller.  And now my now teenage son is linking arms with me to help me walk two f-ing blocks?

So at my last appointment with Mayo med onc in November, I told him that I hadn't started back on Tamox (I was sure to tell him about not being able to walk the two f-ing blocks ).  I'm post-menopausal, and thin, so I told him I would be happy to get rid of the last source of estrogen, and asked the radical question if surgery is ever done to remove adrenal glands.  He said only very extremely rare cases (and probably thinking what a nut case for even asking).  I also told him that I was going back to work soon after a four month leave of absence, and I needed to look and act employable, and wanted to wait a while longer before restarting the Tamox.  He said no prob to that, and said he was lowering the dose to help me deal with SEs.  Then he wrote a new script for Tamox 10 mg.  Said to take it once a day for a week, and then in AM and PM.  I was going to start it again this weekend while I have a two week break from work. 

But, I spent the last two days in bed again hit by the all over the body "flu-ish" attack, and still dealing with surgery pain and taking Oxy and Val.  Which I also told this Mayo med onc that the Oxy and Val did NOT even touch the muscular/skeletal pain that the Tamox caused when I was on it for the 10 day period in August.  The rad onc said I would need to take NSAIDs, but then my cardiologists have always told me to stay away from NSAIDs . . .

When I go back in January, I may be asking him about tests for my hormone balance, etc. and asking him again just exactly what are the latest stats on Tamox survival benefits per my specific BC diagnosis.  I just don't know --  I may ditch the Tamox.  Maybe in six months I may be past my other isssues and could start it then... 

TonLee ~

Regarding your heart function (EF-ejection fraction) . . . are you only on Herceptin temporarily and is this what is reducing your EF?  Mayo considers 50% and under to be below normal, my local university hospital considers it to be 55% and under.  I've had numerous heart attacks (though I don't look like it), and my EF has been knocked down to as low as 30% from some of them.  My heart function recovers after 2 - 4 months,, but only back up to 50% for me (even after cardiac rehab and med changes).  I take several other heart meds, but Mayo cardiologists want me to take small dose of ace inhibitor to help heart function.  (Lisinipril 2.5 mg).  We're all unique patients, so who knows what your doc may suggest for you.  Good Luck with that -- I do hope it resolves after you are off the herceptin.

Sorry to ramble - thanks for listening!