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Jill

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Reply with quote  #1 
Hello,

I'm a new member here but a veteran of the BC sorority, a member of Gina's class of the Fall of 2001.  I was diagnosed on 9/24/2001, my daughter's 11th birthday.  I was stage III with a 6 cm tumor, 40 years old and starting a new chapter in my life.  I had 4 sessions of AC, 2 surgeries, 4 sessions of Taxotere, 38 rads and Tamoxifen.  By July 2002 I was done with treatment and concentrating on growing hair and gaining weight from Zoladex.  A year later I did bilateral reconstruction with lat flaps, 40 pounds heavier than when I was dx'd and getting my life back.

It's been a bit of a bumpy road for the past 6 years.  In 2006 I was told I was in complete remission, somehow I couldn't quite embrace the concept.  6 months later a fluke blood test showed my CA 27-29 was over 300 and scans were ordered.  They showed mets to my pelvis and omentum.  I started Faslodex and Zometa, and then switched to Arimidex in April 2007.  In July the scans showed activity in my ovaries and my onc recommended surgery.  On August 30th I had debulking surgery that removed my omentum, ovaries, fallopian tubes, uterus and appendix.  All had been infiltrated by the lobular breast cancer, so sneaky. 

Recovery has been slow but steady, thanks to a supportive family and good pain meds.  The surgeon feels he removed 95% of the disease in the abdominal area and my onc is putting me on Xeloda to blast out the rest.  Last week my tumor markers had dropped from August's presurgery 800+ to 400.

So onward to Xeloda.  The good news in the story is I have lost almost all of the weight I had gained back in those early days.  My daughter turned 17 last week and amazes me everyday.  I am getting back to work and have a valid excuse to buy new clothes and best of all, I have found this site.

Jill in Pittsburgh
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Reply with quote  #2 
Hey there Jill!!!
It has been a looong road.
I am SO HAPPY you are here!!!!

Here we both are on Xeloda now!

I just started taking it. It is ok. It makes me tired and I get a little queazy but compazine helps with that. The biggest thing it to try to protect your hands from hand and foot syndrome- I have Bag Balm but ordered a special cream called Bianca Rosa Urea which is supposed to help.
You have to watch out for the big D with this- they even have rules! No more than four a day and NONE at night. What makes a poop different at night???

Drink a lot of water too.

I have only been on it a couple of days.

There are lots of girls who have had amazing responses to Xeloda and you are going to be one of them. I just know it!

Dear Lord- Brig is 17????? How did THAT happen????? WE are still so young!!!

Love,
g


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lizws

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Reply with quote  #3 
Hi Jill so nice to meet you.  My you have been down a long road haven't you?    Welcome to a great site!

Hugs & Prayers
Liz

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Reply with quote  #4 
Welcome Jill,

i was on xeloda for a while and it worked well.  Bag balm worked great for me and dont forget to lube up every chance you get.  You have found a wonderful place here. 

Oh might want to have immodium handy.

Amy
Jill

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Reply with quote  #5 
Thanks for the warm welcomes. 

I started back to work part time this week and someone asked how I had lost so much weight in the month I was away.  I told her removal of body parts gave me a jump start. 

I also heard Neutrogena cracked heal lotion works well for the h/f syndrome and my brother uses Norwegian Fishermans lotion for his cracked hands in the winter. 

Where to find the cotton gloves?

And looking on the bright side....no washing dishes I hear.

Jill



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Reply with quote  #6 
Jill:  Its very nice to meet you.  I had a tear in my eye when I read your first post.  I bet your 17 year old daughter is beautiful.  You certainly have been through alot - debulking is pretty major surgery.  Wishing you the best of luck with the Xeloda.  And so very glad you found us.
 
Gina:  There is a reason for no diarrhea at night.  I remember that, but cant remember why - having real chemo brain tonight.  
 
Love every single one of you
 
Nicki

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Reply with quote  #7 
Jill, the cotton gloves are in the manicure dept of CVS. I had a harder time finding 100% cotton socks! They now only seem to make 100% Bamboo socks. WTF are BAMBOO socks???

Are you still at the library?


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Reply with quote  #8 
I had a hard time finding cotton socks also.  You can find every kind known to man but not just 100% cotton.  The gloves were wonderful. 

Amy
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Reply with quote  #9 
The socks that are really soft that I use are White Stag crew socks for ladies. Got them at Walmart. I get the black ones, but I guess the white ones are just as soft. They are some kind of nylon cotton blend, but they work great for me with the hand foot syndrome. They stay soft even after being washed a million times.
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Reply with quote  #10 
Just saying hello.  The white cotton gloves.  I remember them when I was a little girl.  Always wore white  cotton gloves when we got dressed up.  Sending lots of love your way. 
 
Nicki

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Jill

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Reply with quote  #11 
Thanks for the socks and gloves info.  Didn't realize sock shopping would be a challenge.  Bamboo?  are these made for panda bears?

Yes, still at the Library full time but cashing in on accummulated sick and vacation time right now.  If the time comes I will go on SSD but for now I enjoy the social and intellectual stimulation. (If you can call showing folks how to use the photo copier intellectually stimulating!)

Can I ask is Amy the same persona as Fighting Amy?  If so it's great to see you here, if not, it's a pleasure to meet you.

Jill
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Reply with quote  #12 
Hi Jill,
This is a different Amy.
I wonder how Figthing Amy is?
Hope you are feeling stronger everday!
Love,
g


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Reply with quote  #13 
No not the same fighting Amy.  Nice to meet you also. 

Amy
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Reply with quote  #14 

how's the xeloda going?

Jill

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Reply with quote  #15 
Hi Lori,

The Xeloda is giving me tummy troubles, but tolerable so far.  Some food cravings, some queasiness but I am only day 9 so I will wait and see how the rest of the regime goes.  I read you were on it for a year.  Did you stay on the same dose all that time?  The question I've been getting from friends and family is how long will I be on it...and I can only guess for as long as it works or as long as I tolerate it. 

Thanks for asking and for all the welcomes from the girls here.  It means alot to be in an online group again.

Jill in Pgh
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Reply with quote  #16 
My Xeloda doses changed as the SE got worse. It's like going to the end of a cliff but instead of diving down, you  get a reprieve. Depending how you recover from SE, will determine if you stay at the same dose or it will be adjusted again. Don't take this as a negative thing. The Xeloda is still working. But your body builds up the toxicity and will eventually be overloaded. That's when the treatment will change. When I had a two month vacation from Xeloda, I didn't realize how my body was reacting to the chemo. It was amazing how subtle it was.
Xeloda will probably give you fast results. That's what it is known for. Most people have a pretty okay time with Xeloda. Just keep those feet and hands greased up!!! I used creams with Shea Butter. Felt good and not too greasy.  I still use it.
When I have been asked how long will I be on treatment, I say as long as I am alive. And I plan to be here for awhile!!   
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Reply with quote  #17 
Lori said:
"When I have been asked how long will I be on treatment, I say as long as I am alive. And I plan to be here for awhile!!"

I say

YEAH BABY!!!!


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