Start Tamoxifen-April/May 2011

(CROSS POST)

Just got home from my laproscopic Ooph this morning.  Actual surgery only took 45 minutes!  I only have two stitches!!  How awesome is that?  They "say" I can resume cardio workouts Monday...this according to my husband, but that isn't what the Dr told me before surgery....so once I get that clarified I'll be good!

Also, my dr was awesome...she knows how nosey I am so TOOK COLOR PHOTOS and gave them to my husband (of before)...wow, I expected lots of scar tissue....there was NONE.  Again, how awesome is that?!? 

(My uterus was pretty big (well compared to the ovaries...lol about the size of my fist)...filled with blood I'm on my LAST PERIOD EVER!  I'm really hoping the AI will be easier on my eyes and joints.

The worst part is always the anesthesia for me.  I almost puked several time!  And since I wanted to leave they couldn't give me anything for it.  They have to monitor...yayayaya...so I was out of there, came home, took a pink pepto and laid down for a few hours....now I feel hungry...

So far so good.  Def not something to dread....and compared to the chemo/MS/rads....it was the easiest.  (Knock on wood)...now I'm hoping the weather here will calm down...don't want to run for cover, I'm a little sore....

(And as a last hurrah, just in case...yesterday I ate an entire bag of mini robin eggs.  WHAT?  I didn't want to take the chance of dying (always small with going under, but good excuse)!!  lol

Turns out I needed the calories!  (But probably should have eaten them a better way...I know

Are you trying to get rid of me?  lol

I will be checking in with you all....I'm spending less and less time on line as I get my life back....but I check BCO at least once a day, or try too...and always check this thread to see how you ladies are doing.

Much love.

 Tonya

Eyes.  Vision.  Went to a very skilled wonderful civilian Opt. yesterday because, since taking Tamoxifen my eyes have just not been right.  I've always had mega great vision etc, but along about chemo I got a ton of floaters, eye strain, and sometimes I can read from a distance, and sometimes I can't.  Not to mention the annoying halo effect at night.  I wondered if 9 months (about on Tamox) damaged my eyes.

The Opt is VERY familiar with Tamoxifen.  Said there is tamoxifen toxicity in the eyes in a very small number of women.  So small in fact, in his 40 plus years, he's never actually had a patient with it, but has read up on it, talked about it at seminars, etc.

Good.  Great.

So he runs me through a series of tests, the most thorough eye exam I've ever had.  In the end this is what he told me.

Between the ages of 38-42 most people with good (no glasses) start to need reading glasses of +1.  It's an age thing related to the eye and the changes the eye goes through.  You can't do anything to stop it.  It happens in every single person on the planet.  It may come earlier, or even a few years later, but it really comes down to when and not "if."

So, in my case, these changes were likely ushered in on chemo and which happened at the same time I got older..har.  Estrogen, while not my friend with BC, helps to keep the eyeball hydrated (didn't know that!).  Once a woman loses her estrogen, or starts losing it, the eyes become dry.

So?  Dry eyes are no big deal right?  (And yes, I asked him that.)

Dry eyes are essentially dry spots on the cornia...and if left untreated long enough, can lead to permanent vision loss and even blindness!  He said if it gets out of control things can get really ugly.

I have no estrogen, and my eyes have "several dry spots on the cornia."

Everything else is normal, except I need reading glasses of +1.

Here's the part I wanted to share:

He said I have to use eye drops, tears, twice a day religiously for the rest of my life.  First thing in the am, and then after dinner.

Here's the interesting part.

He said most people use bottles of Visine, bottles of gel, etc, or whatever.  Over the long haul, that actually causes more damage to the eye than the temporary relief it provides! 

It appears the bottles are required to have preservatives added to keep bacteria from forming since they are made for many uses.  While this isn't a big deal for a once-in-awhile user, an everyday user suffers irritation to the eye ball (usually unknown to them) while the preservatives are actually irritating and over the long haul, damaging the eye tissue.

So he told me to go to any drug store and buy the "preservative free" or "no preservative" single use tears, or drops.  The key is that they be preservative free and single use because as of right now, all preservatives used are harmful to the eye over long periods of time.  He said brand does not matter, cheap or expensive, just that they be single use and preservative free.

Just wanted to share because I've read a lot of women here suffer from dry eye....and who knew that long term eye exposure to preservatives could actually cause damage? 

Not me!!

And just as an aside, back during chemo when the last Opt wanted to put Pyrex stints in my tear ducts, the current opt read that in my chart and about hit the floor.  He said, "That is so old school.  It isn't even recommended anymore in the field.  We've discovered it does more harm later down the road, than good in most cases."

Well I'm BAAAAAACK.

The difference in SE between Tamox and AI for me was 100 fold.  Through out this entire journey, NEVER have I had such pain in muscles and bones as when on Femara.

I'm back on Tamoxifen for a year, even though in all honesty, I don't think it works for me....hope to strengthen my bones this year in case I decide to follow Onc's orders and go on AI for 3 years after this....but right now I'm thinking no.

Tena,

I don't know for certain it doesn't since there aren't any reliable tests for efficacy.  It's a gut feeling.  I think when my ovaries were kicking I just had too much estrogen competing with the Tamoxifen...I stopped having hot flashes, got my periods back, and I just don't think it was working ...

Hoping now that the ovaries are gone...it will work...at least to strengthen my bones! lol

Hi Zita,

My experience with Tamoxifen has been like this:

1.  Any SEs (vision blurry, sore joints) appeared after about 6 weeks, and mostly dissipated after the first few months.  I still have a sore elbow, but it's not too bad.

2.  My periods started again and hot flashes went away.  Since there is no way to tell if Tamoxifen is working,  had an Ooph, was put on an AI, HATED it, put back on Tamox.

3.  Since the Ooph and back on Tamox, I have no real SE outside the sore elbow.  So I don't know if it is working or not...but I don't stress because my body isn't producing estrogen in large quantities anymore.

Hope that helps

Hi Noelle,

I am still on Tamoxifen. Looks like 10 years is the newest timeline for it. My last Onc said forever, but my new Onc says 10 years.

Ok my eyebrows and eyelashes only fell out after my last hard chemo. They are much thinner now but honestly I can’t blame Tamoxifen for that. I had an Ooph so it could be lack of estrogen (which Tamoxifen also kinda does) or it could be my thyroid. I’m hypothyroid but it is managed well.

I don’t think you have to worry about losing them but maybe plan on them getting much more sparse. I put minoxidil on my brows for awhile and that helped. But I got tired of trying so hard. 😁

Hope that helps