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Skipping rads, going right to chemo (Xeloda)

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

Hello my dear warriors :) I’m piping in to give you an update on my treatments and of course letting everyone know that I’m ok. As I’ve posted, my cancer came back on my spine after 6 short months with NED. Subsequent to long visits with my oncologist I decided to opt out of radiation and jump into chemo, here’s why: My cancer is triple negative, and in my mind, moving fast, growing fast, and all the other horror stories I’ve read about triple negative. So, I thought it would be best for me to jump into chemo because it covers a larger area than radiation. The radiation would definitely help with the pain, but it would target the two tumors, and I fear that while it’s doing that, I may have cancer growing elsewhere. Thank God, I have a high pain tolerance so I can manage the pain while the chemo can get to work on everything from my neck down. I wanted to let you all know I’m starting Xeloda on Monday. Of course this is a pill form of chemo and it has to be picked up at the pharmacy: Retail Cost $5702.00/month, my insurance covers $3100.00, my co-pay assistance card covers up to 80% of the remainder, YIKES!! Basically it’s a five thousand dollar laxative LOL :-) Two of the most common side effects are D and Hand and Foot Syndrome. If anyone has any helpful hints for Xeloda, D, or Hand and Foot Syndrome please pass them along; I want to gather all the information I can before I start it on Monday.
Miles of Love,
~Kari

natly15's picture
natly15
Posts: 1941
Joined: Sep 2009

Kari YIKES this damn cancer is an expensive proposition. I have no info for you but have you in my heart and prayers. Best wishes on Monday.

New Flower
Posts: 4197
Joined: Aug 2009

Thank you for your update. I am sending positive thoughts and wish you minimal side effects from this drug. I remember several people have had similar treatment and I am sure will answer your questions.

Also I know one lady who did both radiation and Chemo simultaneously for short period of time (3 weeks). Maybe you run and want to check it out by your oncologist.
I am praying that this new Chemo pill will work for you and you meet NED in near future.
Hugs,
New Flower

Heatherbelle's picture
Heatherbelle
Posts: 1227
Joined: Jun 2010

God bless you my friend as you start this new leg of your journey. You've been and will continue to be in my thoughts and prayers Kari :)
I had the hand & foot syndrome with my taxotere treatments. The day after the infusion, the palms of my hands got really red. Then it started hurting, starting like a sunburn feeling and in a short period of time it got extremely painful - to where i could barely do anything with my hands. The skin on my palms got drier & drier, then started cracking and eventually peeling. I got it on my feet also, but not nearly as bad. They (my heels) mainly got really red & peeled. My mom got it bad on hands and feet, there were a few days where she could barely walk.
My oncologist gave me steroids (i think prednisone) and it did help. With my second infusion I started taking the steroids as soon as the side effects started and it seems that taking them right away stopped them from getting too bad.
I did slather Aquaphor on my hands & feet all the time to help with the dryness -it really hurt when the skin would crack.
Best of luck to you kari :)
*hugs & hugs & hugs*
Heather

fauxma's picture
fauxma
Posts: 3556
Joined: Dec 2008

Kari,
You are really an amazing lady. You have looked at the picture and have had a decision that sounds right on target. I will keep you in my prayers that the chemo does the job and that the issue of rads can be addressed later. Keep us informed and know that everyone of us is solidly in your corner.
Stef

carkris's picture
carkris
Posts: 4547
Joined: Aug 2009

really here for you Kari, thanks for the update and praying that the chemo works and that you have minimal to no sideeffects. I think you are making wise choices!

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Praying this chemo will work for you Kari! So sorry about the expense of it.

Hugs, Leeza

Aortus's picture
Aortus
Posts: 967
Joined: Jan 2009

Kari, I will definitely keep you in my thoughts and prayers, but there is precious little worrying I can do about someone with the guts to joke about Xeloda as an expensive laxative. I keep thinking back on all the crap you have had to put up with in addition to this TNBC crap, and how you have always come through on top, laughing and cracking jokes. You're gonna wind this round too.

God Bless,
Joe the Tiguan Jockey

sausageroll's picture
sausageroll
Posts: 415
Joined: Dec 2008

Tiguan Jockey...have a good trip and take your foot off the peddle now and then!!!

Kari..you seem to have really made a very intelligent decision. What more can you do? i hope the pain is bearable and you don't have too many horrible side effects.

Can't offer much help. I did have hand and foot..skin peeled off every couple of weeks and lost my nails. I also used Aquaphor a lot. The big D is the "bummer"....sorry!!! I should have taken stocks out in Depends. You'll get through this...smiling and laughing as you always do. Thinking of you. Take care. Pat

MyTurnNow's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

It sounds like you have taken this beast under your control once again. I hope the Xeloda does the trick on the tumors and then the rads finishes it all off. I'll be sending positive vibes and plenty of (((hugs))) your way. Unfortunately, I don't have any personal experience with this course of treatment. Your take charge attitude along with your humor will get you far. We'll all be right there with you. Good luck and sending love to a special pink sister.

disneyfan2008
Posts: 5623
Joined: Oct 2010

wow...so stil must pay out of pocket...If i read correctly?

sorry you have to go through this...I hope your days are tolerable! I have never done chemo but MY heart is with you...

Double Whammy's picture
Double Whammy
Posts: 2388
Joined: Jun 2010

Kari-
Your decision to do chemo first makes sense to me, too. I wish you success and NO side effects. Just because you can have them, doesn't mean you will. Right? I assume it's possible the chemo will also shrink the tumors that are causing you pain.

Sending prayers, hugs, and positive thoughts now and throughout your treatment and recovery.

Suzanne

survivorbc09
Posts: 4378
Joined: Jun 2009

Wishing you good luck with chemo Kari and praying for no side effects! Keep us updated!

Hugs, Jan

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

I will be thinking of you Kari and sending cyber hugs and positive thoughts!

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

I know this is a journey you would not choose, but I think you are making the best decision for you. My thoughts are with you as you start chemo.

Mimi

Clementine_P's picture
Clementine_P
Posts: 415
Joined: Feb 2011

While I am new to these boards and don't know you very well, I can see the admiration, love and respect these women have for you. I hope that you will be okay and that this latest of your ordeals goes smoother than you anticipate. Good Luck and stay strong.

Clementine

Bella Luna's picture
Bella Luna
Posts: 1579
Joined: Aug 2009

Kari... you are in my thoughts and prayers. Hugs and I hope the new drug doesn't have too many side effects for you. Keeping going, we are here for you.
BL

MAJW
Posts: 2515
Joined: May 2009

You the very best as you start chemo....I, too, am triple negative...I HATE this stinking disease!!!! I agree with your decision to start with the "big gun, chemo!". Not much more I can add, except to let you know we're all "with you"....
Wishing you love, strength, courage and prayers...what ever you need most...
Nancy

ElizabethB's picture
ElizabethB
Posts: 89
Joined: Feb 2011

does that mean you have 3 bad receptors?????? I am so confused I guess I need to ask my Doctors about things I feel like a mushroom kept in the dark. I don't even know what level I had my cancer at....I am so confused

Christmas Girl's picture
Christmas Girl
Posts: 3675
Joined: Apr 2009

Kudos to you, Kari, for making a tough decision that's right for you. Can't offer specific help nor advice...

Do want you to know that I'm rooting for you, cheering you on. Hoping you'll do very well with chemo.

Kind regards, Susan

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

It sounds like you've made a thoughtful, logical decision. I think I would put up with the pain and go for the chemo first too.

I had mild foot and hand. At the first sign of red on my hands, I started with Aquafor...slathered it all over my hands and feet at night and put cotton gloves/socks over that. It took me a while to find the gloves, finally got them at Ulta.

Best of luck with your treatments, let us know how you're doing.

Hugs,

Linda

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

I took TAC for 6 rounds and my side effects were very minimal compared to most. You sound like a pretty tough cookie to me--and a real fighter. Take it one day at a time and don't anticipate. Start thinking--"This is going to be okay, I'm going to do just fine. I CAN do this and all will be well."

I'm going to start saying it with you--come on, girls--let's say it for Kari.

Hugs, Renee

ElizabethB's picture
ElizabethB
Posts: 89
Joined: Feb 2011

I wish I could pass you some info but I am new at this myself. I pray for you recovery to be quick and a positive note.

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Praying for you Kari! Keep us informed on how you are doing!

camul's picture
camul
Posts: 2182
Joined: Dec 2010

Kari, I wish you the best. Haven't gotten the hand/foot, but the D is familiar. I did the rad first on the hips and spine, but when I was thru, it was my thighs ,calves and ribs that were throbbing, so now I am on Abraxane.
I am sending you positive thoughts for Monday, and I love your sense of humor. I know that is what gets me thru each day.

Carol

cahjah75's picture
cahjah75
Posts: 2623
Joined: Jun 2010

what a difficult discision you had to make but it sounds like a good one except for the cost! Cancer sure is expensive! Hang in there. We are here for support!
{{hugs}} Char

jo jo's picture
jo jo
Posts: 1175
Joined: Jun 2010

Kari i had no idea you were going threw this again...Im shocked and speechless...i must of missed the news while i was off the grid for awhile. Im sooo truely sorry but your an amazingly strong person with an attitude to match. Youve beat it once and had 6 months with NED and youll have him again.
Im just sorry you have to repeat this again. This is truely troubling for me. Cancer has no mercy and seems to infect the sweetest people. Please keep in touch and let us know how your doing with your outragous costly chemo.

Jean 0609's picture
Jean 0609
Posts: 2384
Joined: Jun 2010

Hope everything works out as you begin your new medication. Keep fighting, you are one strong cookie!

xoxo,
Jean

linpsu's picture
linpsu
Posts: 732
Joined: Mar 2010

So sorry you have to go through all of this. Prayers and hugs are coming your way as you start your new treatment on Monday.
Love,
Linda

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

joining the other pink sisters in wishing you good luck on Monday Kari. You are a true warrior, a true fighter and we will all help however we can to help you keep your spirits up and your strength to fight the beast again.

Sue :)

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