Start Tamoxifen-April/May 2011

Kaara

TonLee:  Thanks for sharing that study.  The one that I read on the site said that if you take tamox for 2 to 3 years and then switch to an al after that, there is little or no difference in recurrence.  I guess I just want to put off the bad SE's for as long as I can:(  My MO said if I tolerated the birth control pills well, which I did, then I will do ok on tamoxifen.  Hope he's right.

TonLee

Kaara,

I don't see the correlation between Tamoxifen and birth control pills, other than they're both synthetic hormones.  I took the pill for 20 years with no big probelms and still have SE from Tamoxifen.  And they are EXACTLY the same ones (minus vision problems and uterine bleeding) that I am reading about on the AI threads.  Mostly for me it is severe joint pain. 

But your Onc is right.  You may be one of the women who have NO SE.  I'm hoping that for you!  Keep us posted.  And if it is any comfort...I didn't really start hitting SEs until about a month maybe a little longer out...they peaked at 3-4 months and then mostly all resolved except the joints, eyes, uterus ... which sounds like a lot but after the year we've had?! 

Cake.

Kaara

TonLee:  I started my first pill last night...1/2 the dose prescribed because I have such a phobia about taking this drug!  I don't see the connect with birth control pills either but that's what my MO said.

I'm mostly fighting my bc recurrence with exercise, diet and supplements.   

Omaz

Kaara - I found that it took about a month to get used to the tam.  It seemed to accentuate my emotions, whatever I was feeling was magnified.  After about a month it settled down.

Kaara

Omaz:  Oh boy...can't wait....my emotions are already exaggerated since I've been taken off all HRT!  I better warn friends and loved ones to steer clear for awhile:)

Omaz

Kaara - It was weird!  I am a pretty even keeled, numbers-linear kind of person and I was getting mad at my shoes if I couldn't find them.  Glad that went away!

coraleliz

I feared the "emotional" SEs of Tamox because I was a basket case on birth control pills 20+ years ago. Emotionally I'm fine on Tamox. It's the dizziness, vision changes, pelvic pain, headaches I'm experiencing. All of which I prefer to the "emotional" SEs I had on BCP. Oh yeah, I remember being told BCP hadn't been proven to cause those emotional changes. I wonder if they've found "proof" yet

TonLee

I'm off to surgery....11:30 ...hoping my life long Feb. bad luck streak breaks today! ha

p.s.  I'm STARVING and need some coffee!

Kaara

TonLee:  Praying that things go well for you and you'll be on the road to recovery!

PinkHeart

TonLee~

I'm thinking about you right now with warm hopes that you get cut a break and all is going to go well for you in surgery and recovery!  Let us know how you are doing when you are up to it.

pejkug3

Good Luck, TonLee!

Omaz

Good Luck TonLeee - thinking of you!

TonLee

Well it didn't happen.

I stopped eating drinking yesterday, last night like ordered.

Got to the hospital at 0915 with a surgery time of 11:30.  Vitals, changed into the gown, IV inserted and then I just waited for my surgeon to be done with the hysterectomy before me.  She only scheduled two surgeries today because she's 6 months pregnant and taking it easy.

I waited.

Waited.

Waited some more.

Turns out the hysterectomy ahead of me had complications, those pesky things that are so down played by most Docs.  Sitting here writing this, I am not sure the woman will survive, and if she does, I'm not sure how qualitative it will be.  There were serious, numerous complications (which likely involved the bladder and bowel).

At 5:30 I yanked the IV out of my arm, sick with caffeine withdrawal, sick of waiting, got dressed and told the nurse to have the surgeon reschedule.  They made noises about me not leaving until I was "released" by the surgeon.  But I blew right past that.....what?  Am I a HOSTAGE?  Because THAT'S WHAT IT FELT LIKE!!  I said, how can you just expect me to sit here hour after hour with no food or water, not even an ice cube, with a screaming headache that you won't treat because you can't reach my surgeon to get permission because she's in EMERGENCY surgery!  Airlines can't keep people like this...what makes you think you can?

My surgeon WAS STILL IN SURGERY AT 5:30PM!!  She'd not eaten or had a drink of anything in all that time....and she's 6 months pregnant!  No WAY I was going to let her operate on me after all that.  I heard all the surgeons they paged to the OR....can you imagine a quick two hour hysterectomy turning into an over 9 hour (at last check) ordeal?

No friggin way.

So I left.  Walked out.  Vamoosed.

Got some supper, some dessert, and now I'm lamenting my entire WASTED day...and the fact I have to do this all over again....and I will...but I also have to wonder....did my life long bad luck Feb streak just show true to form..or did it break?  If I woulda been first, perhaps that scapel slip woulda been on me......

Omaz

TonLee - I am thinking maybe a different surgeon - just a thought....glad you are OK!!  5:30 - that's unbelievable!

pejkug3

Wow, TonLee.  That is just crazy!

I'm with OMAZ...

The day of my lumpectomy, the patient before me had complications and my surgeon was running 3 hours late.  I know him socially so I trusted him but it was truly unsettling.  Can't imagine how you must have felt!  And you were MORE than patient...don't blame you one bit for walking out!

PinkHeart

So sad for the first patient and it so sucks for you!  I would've walked out two hours earlier than you did.  I hope you get a personal call from the surgeon, or you find a new one.  Again, so sorry this happened. 

TonLee

Well the surgeon hasn't called.  Maybe she's mad.  Remember I'm being treated at a military facility, so there is not just doctor ego on the line, but military officer ego as well (we can operate 24 hours straight if need be!)....which also goes to the fact, I can't just switch surgeons because I want too Omaz.  The military doesn't work that way.

But honestly she doesn't seem prideful like that.  She's young but my PS says the OB is a marvelous surgeon, and I believe it.  My PS also told me the more a surgeon performs a certain surgery, the higher the chance eventually one of those "rare" events will occur.  Kinda like, the more you drive, the higher the chance you'll eventually be in an accident.

I think she was probably secretly happy.  She was on her feet for over 9 hours, no food or drink, and being 6-7 months pregnant.  I was exhausted and all I did was lay around and read all day!  I'm sure the anesthesiologists were happy they could go home too...Friday night and all that...

I trust her to do this.  But now I feel for the woman before me.  I can't call and ask if she survived because of HIPPA.  I'm sure she survived, but I wonder what it cost her...

Don't ever let anyone tell you a hysterectomy is easy and without risk!  Sure lots, maybe even most women, get through it with no problems at all...at least in the first 10 years or so...but it seems when something does go wrong, that small minority end up with bigger problems than anything the uterus could cause, short of death.

My cousin's wife is heading for a hysterectomy the first of March due to painful heavy periods.  I've encouraged her to ask about an Ooph, and if it will suffice in her situation.  Her own mom had  a hysterectomy 15 years ago and her bladder prolapsed out of her vagina!  But she's in so much pain she will risk that....but if an Ooph shuts down the uterus, and it goes "dormant" then why not?  Recovery is shorter.  She's diabetic so less invasive.

I watched the DaVinci and surgeon assisted lapro hysterectomy on youtube.  It's fairly violent imo.

Ok enough rambling...had some COFFEE this morning...can you tell?  lol

Omaz

TonLee - I am glad that you have confidence in your surgeon and I don't think for a moment that you should feel bad about leaving!  when I went in to the hospital to get my port removed (my surgeon does it in the OR) the nurse said they had a new policy and that another nurse would be by to 'wash me down' with anti bacterial rinse.  Allover.  I said 'what?".  She said yes it reduces infections.  I said I am getting my port out and have very sensitive skin and 'NO' they could not 'wash me down'.  She tried earnestly to change my mind and then put it in my chart that I refused.  I was a 'bad' patient but what the heck!  Who knows what that stuff is and I think it is mainly done for the benefit of the hospital not the patient.

TonLee

Wash you down?  lol...I just had to laugh at that Omaz.  That just sounds....wrong.

I bet you weren't the first person to say, uh, thanks but no thanks! 

It's so funny when I say no to ANYONE at a military hospital.  There is the second it takes for them to hear it and realize I just said it.  The shock on their faces, and then total pure bewilderment.  "What do you mean no?  How am I supposed to handle a no?  No one ever tells us no."

Then they get scared.

"Oh crap, I'm going to get in trouble.  There is no place for the word no in our system.  So that means I will have to take the blame."

Yesterday when I told the nurse I was thinking about leaving....she said, "Well that's understandable, but you can't leave until the surgeon releases you, and we can't get ahold of her while in surgery."

She was so sure that'd take care of the situation.

I just looked at her and said, "Watch me."

Her face went through all those emotions above, she left and sent in someone higher ranking (as if rank might sway me one way or another)....lol.

Nope.

Kaara

TonLee:  I think you made a very good decision to get up and walk out of there.  Everything happens for a reason and it wasn't meant for you to have surgery that day.  There is really nothing they can do to keep you there, any more than they can dictate what treatment you have, etc.

It isn't emergency surgery and can be rescheduled at a time that is convenient for you.  If the doc is mad, she can get over it.  It's your body and you have the right to choose what is best for you.

I'm sorry you had to go through this, but you used your head and that is good! 

Omaz

Yes TonLee - I can see that at a military hospital they would not hear no very much!  You have always been a stong advocate for yourself.  My daughter stood up to her piano teacher because she did not want to do the recital at Christmas.  She hates performing and thought it would ruin her holidays because she would worry about it.  I don't think any kid ever refused before and was able to stick with it.  It took my daughter the whole lesson of persistently saying no to actually get the teacher to take her name off the list of performers.  Now though, the teacher and her have a much better relationship-it actually changed everything for them for the better!

TonLee

Thanks Kaara!

Omaz, good for your daughter!

Omaz

TonLee - I was very proud of her!

TonLee

Omaz,

I've noticed a cultural difference in sections of the country in how women are taught to respond to authority.  In the deep south, my in-laws, the women, NEVER question authority. It would never occur to them to disagree with an "expert."

In Ohio, the women are much more assertive in social situations, but most of the women I know over 50 wouldn't second guess a doctor.  I go to a group with older women in it, BC, and they can't even tell me the name of the chemo they took......not a single one of them.

The younger women in Ohio seem more engaged in treatment.  The young woman's group I attend is full of information.

My youngest is sick today.,...fever, throwing up....gotta run!

GirlFriday

I just got back from the eye doctors...has anyone ever heard that Tamoxifen can make you go color blind and can case build ups in your eye resulting in a loss of vision.  I guess it's rare but wow!

Oh, and I just got a note from the site saying my privileges for reporting have been revoked...I don't think I'm on here more than a couple times a week (if that) and I'm hardly even posting any more let alone reporting everyone...which I don't think I have ever done, unless it was spam.  Do you think I got "hacked"?

TonLee:  Hope your kidling is feeling better!

Omaz:  Good for your daughter!  I remember not wanting to perform at a piano recital, and I was forced too.  I got up there, and couldn't remember a thing.  so traumatic!

Kaara

GirlFriday:  My greatest fear of taking tamoxifen is the eye problems.  I already have macular degeneration and I'm concerned about any advancement.  The eyesight in my left eye is almost completely distorted.  I have an app't with my eye doctor this next week to see what his recommendation is.  In the meantime, I've started on a lower dose than recommended.

Omaz

Girlfriday and kaara - I have problems with my retina too, esp my left eye.  I have some testing next month and will ask the retinologist about the tamoxifen.  Girl - pm the moderators and ask them what it's about.

TonLee

Friday, March 2nd, I go in for a second try at the Ooph.

I'm just glad Feb is over.  Never a good month for me...so on to March!

I'll post updates, and anything about the process I think might be beneficial!

Omaz

Good Luck TonLee - I hope you are the first surgery of the day!

TonLee

Haha...me too Omaz!

I'll find out tomorrow...