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Need some hugs today

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Hi everyone, just got the news my CEA level is now up to 22. It waw slowly rising, and I have been off chemo for 6 mos, feeling great. Am on Avastin every three weeks. My Dr. says he expected it to rise, he will wait for my CAT scan results (scan is in 2 weeks) and when it is appropriate he will put me back on a different chemo. I was on Folfox w/Avastin for 6 mos. Am inoperable due to size and number of tumors in liver although they shrunk considerably.

Can anyone cheer me up today? I just need a hug! Thank you so much.

Joyce Steele

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

i'm so sorry ti hear about your CEA count Tina

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

For the hugs. :)

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

For the hugs. :)

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

For the hugs. :)

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Joyce,
I have been there and it is not a fun place to be. When you hit these holes in our road, don’t let them get to you. Have you talked with them about liver chemo/embolization??? They could not operate on my liver and the embolization did the trick.

My liver will be clear for 2 years next month.

Kerry

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Kerry I have not but will - thank you for your hugs and the info and encouragement.
So happy for you.

Joyce

OGammy01
Posts: 67
Joined: Oct 2010

Hi Joyce, I'm sorry for your problems. I'm rather new here but I know there are a lot of caring and knowledgable people here. I am supposed to start my chemo this Mon. but I just found out I have a parastomal hernia. I don't know if that will interfere. Anyway, I will be praying for you and here's a big hug for you.

Diane

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

I will keep you in my prayers. Thank you for your kind note and the big hug!

Joyce

AnneCan
Posts: 3692
Joined: Oct 2009

Joyce,

I am sorry to hear of your CEA rising. I am also inoperable at this time. I am on folfiri + avastin + it is doing a good job so far. You may just need more than avastin to keep things under control. Big ((((((HUGS))))) are coming your way!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

from the other side of the ocean!
Hugs again!

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Thank you so very much. And hugs back to you. Joyce

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Anne, thank you. Assume that will be my next round, Folfiri. Glad it is working for you. And yes, I obviously need more than Avastin. But I have had 6 great mos on it, no side effects. I appreciate you taking the time to write. And everyone else. Sorry I posted the same thing 3 times! Hugs back. Joyce

jararno's picture
jararno
Posts: 189
Joined: May 2010

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Jaylo969
Posts: 827
Joined: Jan 2010

Super cyber hugs coming your way. {{{{{{{{{{{{ Huge HUGGGGS }}}}}}}}}}}}

-Pat

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Thank you Pat.. loved the hugs... already feel better. You are all amazing! Thank you everyone.

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

This made me smile... thank you!

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

So sorry you are feeling down today, things will improve! Definitely look into alternative options to surgery such as chemo embolization, RFA, etc. I had a tumor in my liver ablated using microwaves, a little newer than radio frequency.
mary

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Mary, thank you for your note. I need to do some more homework and will do that right away. Have read just a little about embolization. And nothing about microwaves. How fascinating. Best wishes for you. Joyce

Lovekitties's picture
Lovekitties
Posts: 3360
Joined: Jan 2010

Dear Joyce,

So sorry to hear that your CEA is up and you are left for weeks now before scan.

Of course you can have hugs...all you want...HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS .

Hopefully your doctor will use the time to come up with a game plan which will be the one to take care of the tumors.

Marie who loves kitties

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Marie, thank you for cheering me up. I love kitties and puppies, too. My Oncologist is incredible, I love him. He will take good care of me. I am feeling better after all these wonderful people and notes. I thank God for each of you. Hugs back, Joyce

Luv2lunch
Posts: 272
Joined: Aug 2010

Joyce,
Big hugs from me and Mom. Two dogs sending cold nose kisses. Mom said she will say an extra prayer for you tonight.
Feel better :)
Linda and Ellie

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Linda and Ellie, thank you for your warm thoughts and the prayers. It means the world to me. Take care, hugs back. Joyce

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I know it must be discouraging...but you are strong and will beat this beast, whenever and wherever it is!!!

I got MAD! How DARE something change my life so much, and scare the pee out of me!!!

(I DID get a new head of hair, tho...and it's a totally different color...MUCH less grey!!! YEA! So maybe my mad DID make an impression, and the beast is trying to suck up...LMAO!).

Hugs, Kathi

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Kathi, thank you for the hugs and encouragement. I will try getting mad! lol. My hair is growing back and is still gray. Oh well. :) Hugs, Joyce

Annabelle41415's picture
Annabelle41415
Posts: 6692
Joined: Feb 2009

Sorry I missed this post earlier. Here are cheers for you and hoping that things will get better for you.

Hugs! Kim

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Kim, thank you for your note, taking the time to respond and for the hugs. Today started out on a down note, thanks to all of you, has ended up on a high. Hugs back. Joyce

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Sending you a big cyberhug.

I understand where you are coming from. I did 12 rounds of FOLFOX, clean scan and CEA normal. Then at the 3 month CEA check it was up. PET showed recurrance (or progression, as it probably was never really gone).

So now I'm on FOLFIRI and Avastin.

I'm glad you got a 6 month break. But it still sucks to have to do chemo again.

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Kathryn, thank you for the big hug, got it. I did 12 rounds of FOLFOX w/Avastin, tumors shrunk considerably but always there. 4 in liver, one was size of grapefruit a year ago. My CEA went from 645 a year ago to 8.0 and stayed there until a few weeks ago. I have been on Avastin alone since finishing my chemo in May. The 6 mo break was wonderful and I still feel great physically, today really through me for a loop for some reason since I have always known I would have to continue chemo and was thankful for the time I had off and all that had happened that was so good. After all these messages I feel much better and am praying my next CAT scan isn't too bad. Thank you, I read your story and like so many others here, you are an inspiration to me. Take care and here's a hug for you! Joyce

tootsie1's picture
tootsie1
Posts: 5064
Joined: Feb 2008

Ah, Joyce. I'm sorry you're having to deal with this. I'm sure you're scared and worried. I'm praying everything will be wonderful!

*hugs*
Gail

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Gail, thank you for your prayers and hugs. Enjoy your day. Hugs back, Joyce

vchildbeloved
Posts: 133
Joined: May 2008

Hugs are what I do best!!!! Many to you my dear.

Val

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Val, thank you for the hugs and for taking the time to send them. Have a lovely day. Joyce

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Joyce,

Sending more hugs (and prayers) your way!
You take care and do your homework- the local doc doesn't always know all that is out there, as I have discovered myself. Lots of good ideas were suggested to you-

Hugs,
Lisa

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JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

For the hugs and the point that my Dr. did expect it to go up. He was not surprised and said we will wait to see what the CAT scan says. He feels in the context of things (coming down from 645) it is nothing. I trust him explicitly. Guess I tweaked big time when I got the news. Am feeling much better thanks to everyone here. Am so blessed to be on this board. Happy Weekend. Joyce

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