Bottle o Tamoxifen

Murphmort..I have heard of eye problems from Tamoxifen but my eye doc as well as  my Onc say it is rare . I hope all is well and you are not having any problems with it.

Sherry... ok now your talking im in!!!!

JO...Gentle little Tinkle whack!.. just practicing a little... it was a little one though

Tink - Not sure I want to whack you just yet.  I will provide some much needed Friday snacks.

Just took the first of MANY Tamox pills!  Here's hoping for 5 years of no SEs or recurrences!

I was told that I would likely do 5 years of an AI after I'm done with Tamox.  I'm 37 and have been in chemopause for 7 months so Tamox may finish the job:)  Anyone else heard of this???

Tammy

Tammy glad to have you join us.  I am 49 and pre-menopausal and my MO has also said tammi until menopause then 5 years of Al so we will see. This is a great place for support and we have fun too!

Yummy in my tummy!

One of my bunco gaks had said Tamo had affected her moms vision, so I had a check up and a chat with the eye doctor.  He told me that if I notice any changes to go see him ASAP.  Then he will do some more testing.  He had mentioned retal detachment?  V you are so right in BC and Tamo the gift that keeps on giving.  I said the very same thing a few weeks back to a coworker. 

Welcome Tammy, Im sorry we have to meet this way, but you've come to the best place.  Good Luck!

my eye doc said to keey and eye on the eyes as it does potentially change things fomr some people

Thanks for all the responses .... I don't know what I would have done w/o this forum when I was going through everything a few years ago.  Three years cancer free!

The tamoxifen retinopathy is a rare side effect, around 5%.  I just wish my MO had mentioned it so I wasn't so surprised at the eye doctors.   The damage has been done to my retinas, not severe.  The question for my MO is if my continued use of Tamoxifen will erorde the retina even more.   I have 1 year and 11 months left on this ... but whose counting!???  I do wear glasses for both reading and distance but haven't noticed a change in my vision, so that's good.

Its one more piece of information that all of us should know.  Add the eye doctor to the list!

Thanks again, girls.

(((Paula)))

Totally understand, Paula.  My kids are my world, at 22 and 18... When my 22 year old daughter was applying to law school, I panicked thinking she would move from Boston to DC.  She ended up deciding on Boston. 

Give her a call today and it will help to hear her voice.  Also, do you skype?  One of my friends has a son who is in Australia for a 2 year job assignment and that's how they communicate. Helps somewhat with missing her son. 

It hurts when anyone leaves, whatever the reason....and visual triggers are hard...give her a call and hear her voice...send her a skype message...go out for a walk and distract ourself once you have had a good cry....and find some other arms to give you a squeeze....the physical sensatoin will help. Remember tha this is fear/nerves tackling you at the moment...they shake us when we are most vulnerable...so go and grab some vitamin D sunshine and breathe...24 hour rule

virtual hugs from Canada

I've been on tamoxifen for 5 months now.  I have experienced:  nausea, hot flashes, weight gain, EXTREME fatigue, difficulty breathing, edema in my left leg and now pain in my right foot.  All in all I positively hate the drug, and to be honest, I'm not real fond of my oncologist either.  It seems like every time I turn around I get a new side effect, I call the oncologist and she says "That's not a side effect of tamoxifen", then I look online and find that it is.

I am scheduled for DIEP in the middle of August, and was told to stop taking the tamoxifen 2 weeks prior.  I decided to give my poor body a break and stop 3 weeks prior.  They keep telling me that my kind of cancer is super slow growing, so I don't think it'll be a problem (I hope)

Thanks girls.  I am better this afternoon.  Thanks for understanding.  I talk and text with her several times a week.  Her bro has a very hard time with it also.  They were like 2 peas in a pod.  I talked with my sissy and am over the ruff part as of now.  Thanks for the hugs!

Gardenbumby welcome and I sorry to here whats going on. I just cant stand reading about the Oncs who sound like yours.  My goodness I think we know something is up when something isnt right.  I have so much more going on with all the changes my body has gone thru since I had my breast removed, then chemo, and finally the Tamo.  I have never ever had the issues I have now until Dec 29, 2010.  I just wish they would get a clue sometimes.  Good luck with your up coming surgery!

Paula ((((((((((((HUGS))))))))))))) it is hard on us Mama's when the kids leave the house.

Gardenbumpy sorry you are having so many SE's.  I think I have had them all but my body has finally adjusted.  Don't think I could handle it otherwise.  I agree with Jo if you Onco is not listening to you find another one.  Life is too short.

GardenGumby, same problems, I stopped first week of May, had exchange May 19th and have not taken Tammi since.  I had alot of your SE's and I still have SE's in feet, legs, fingers and bones.  Life is too short and I am better off than on.  My family even noticed a difference, said I was so cold and curled up, didn't have energy to do anything.   I would rather have some quality of life, although this last week I was sick and not a good week to miss work, had bone and joint pain so bad in my knees, shin bones and back of thighs,, bad headache (havent had one since July 10), I do not know what could be going on.  My Onc keeps prescribing drugs for drepression, which I am not and I took one Monday night and all started Tues early am.  Today, finally started feeling better.  I have had hard time sleeping with neuropathy, feet still freezing cold and fingertips numbing.   Love being able to go out in the hot sun and walk on a hot deck, come in and cold again.  Good luck with deciding what to do about Tammi.   My Onc says same thing; SE's cannot be from chemo or tammi, see a neurologist or rhuematolgist-so trying to get appt., just one more appt...ughh, when will they end?

thank-you all for your replies.  This has been a really hard time - no news to you all, I'm certain!  Unfortunately, I didn't lose weight on tamoxifen, I gained about 20 lbs.  I know the weight gain can be exacerbating the other problems, but right now my foot hurts so beastly bad that I can't put any weight on it.  The GP said this was a pretty common problem with tamoxifen.  I think I'll probably give my oncologist one last effort, but if she blows me off again, I'm finding a new one. 

I don't know if I'm going to be willing to go back onto tamoxifen after my surgery.  I don't want cancer again, but quality of life has got to count for something, too.  I'm post menopausal (61), so it's possible that one of the aromitase inhibitors will work for me.  I haven't investigated their side-effects, so don't know if they are better or worse.