More bad news to add to the board

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Paula G.
Posts: 65
Joined: Mon Apr 27, 2009 9:50 am

Re: More bad news to add to the board

Postby Paula G. » Sat May 02, 2009 12:10 pm

Kelly,
I just recently joined the cc because my husband was told about his stage 4 cc last November. My heart goes out to you. There has to be somthing out there for you to try next. I will pray for you also. I think it helps. I'm not a church goer but I do believe in a higher power. Please keep up hope. Paula G.

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jules10100
Posts: 224
Joined: Thu Dec 27, 2007 1:55 am
Location: Placentia,Ca

Re: More bad news to add to the board

Postby jules10100 » Sat May 02, 2009 12:48 pm

I know somedays just really suck, but try to remember to think positive, and keep yourself doing the things you love, try to get up out of bed on days that are hard and believe me you will feel better. Lately, I have been dwelling on being a stage IV and have to remember to move on.
RC resection 06/07 xeloda, radiation, folfox
Stage IV Lung and Liver Mets 11/08 res
Folfiri & Avas 09
2/10 lung spots Irr.Erb
Next Vectibix
Irr, Erb and Avas. for Lung spots 4/11
Folfirinox
Clinical trial Nov 11. Brain mets
Option for Chemo unknown

Ellen
Posts: 227
Joined: Wed Apr 25, 2007 11:24 pm
Location: Portland, OR

Re: More bad news to add to the board

Postby Ellen » Sat May 02, 2009 4:34 pm

Kelly,

I'm really sorry to hear what a difficult time this is. I can TOTALLY relate as I'm in nearly the same spot as you--and, I'm terrified to even try oxy again due to the continuing neuropathy i have 1.5 years after stopping the first time. I can say that some days all this "reality" gets me really down, and others (I know you will start having these again soon) I think: there's still a chance I can beat this long enuf for another great treatment option. So I'll keep fighting, fighting, fighting as long as I feel good and have a good quality of life. I hope you will, too. Please keep us posted on anything you learn re: clinical trials. And, feel free to PM me at any time.

I'm thiking of you!

Ellen
Stage IV CC
Colon resect, chemo, unsuccessful liver resection 2/07-11/07
Bile leak/progression 12/07-4/08
Folfiri/Erbitux, Folfiri/Avastin 5/08-6/09
Olaparib 7/09-9/09
Folfox 10/09-1/10
MitomycinC/Xeloda 1/10-
43 Y.O: 2 children: 3 and 5.5 years.

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

Re: More bad news to add to the board

Postby dianne052506 » Sun May 03, 2009 3:24 am

Kelly,
When you feel like you can't hang in there, hang onto others!

Prayers from North Carolina.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

Annaleisa
Posts: 107
Joined: Sat May 03, 2008 11:13 am
Location: Texas
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Re: More bad news to add to the board

Postby Annaleisa » Sun May 03, 2009 3:17 pm

My "I'm gonna beat this" mentality is diminishing by the week.

Hang on Kelly. Just look at this as a setback, and know that we are all here cheering you on. Have you torn the floorboards out yet? That might make you feel better. A little constructive destruction always does me a world of good! :D
I was surprised to read what the onc. said about health issues at 2-2 1/2 years. That's the first I've heard of that, and I'll be asking my drs. what they think. I was diagnosed shortly after you. I'll have another CT scan in the morning to see if "it's" back.
Diagnosed 5/24/07 Lobular Breast Cancer; 5/25/07 Stage IV Colon Cancer
Colon/Liver Resection 6/21/07. Folfox/Avastin/5FU July 07-Feb.08.
NERD Oct. '07; NED since Feb. '08
http://theboggsfamily.blogspot.com/

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Candyys03
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Facebook Username: Candy Llamas
Location: Riverside,California
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Re: More bad news to add to the board

Postby Candyys03 » Mon May 04, 2009 1:29 am

I have a friend that has gone from hospital to hospital for treatment each time transfering the insurance and he has done clinical trials too.Seven years later he's still here.You have to do what's right for you.Don't give up keep fighting.Look around for the best treatment.Don't listen to the bad stuff it doesn't help at all.Stay positive.Just because your stagelV doesn't mean it's a death sentence.There are many survivors.
Candy
DX8/0642yrIVCCmtsliver
9/06opcol+lymps
07oxy
08livernonop
08iri+erb
1/09opliver
NED11m
12/09lungmts
3/10livermts
NED7m
2/11lungmts
4/11NED3m
5/2Xel
9/26lungop
NED6m
3/12lungmtsirierb
11/27avas+ox
7/13Stivarga
10/28irierb
1/17
caringbridge.orgcandyllamas

suew

Re: More bad news to add to the board

Postby suew » Mon May 04, 2009 12:52 pm

I would love to try the Kanzious Machine...anyone know where they are doing it??

AJS
Posts: 753
Joined: Sun Feb 17, 2008 10:47 am
Facebook Username: Angie Jennings Stratton
Location: Virginia

Re: More bad news to add to the board

Postby AJS » Mon May 04, 2009 2:17 pm

Kelly,

Sending hugs your way!

Angie
[size=50][color=#FF00FF]Diverticulitis/Resection 12/27/07
Dx 1/08-Stage IIIA CC-2/15 Lymph Nodes-42 yrs old
2/08-8/08 -Folfox/Erbitux
Hysterectomy 3/09-CC on Ovary-Folfiri&Avastin
1/12-resection,bladder surgery,illeostomy
3/12-Illeostomy takedown
5/13-Folfiri/Avastin

Lifes2short
Posts: 549
Joined: Mon Oct 30, 2006 10:54 pm
Location: Salt Lake City, UT

Re: More bad news to add to the board

Postby Lifes2short » Mon May 04, 2009 2:26 pm

Kelly, sorry for the bad news. Don't listen to those docs who say that 2 1/2 years is the turning point. I've been at this for 3 1/2 years and I'm still going. Not as well as I'd like, but I'm sill up and around and active every day. As a matter of fact, now that my pain is under control and I'm off my 3++ year course of oral and/or transdermal narcotics, I feel better than I have in a long time.

I attribute my longevity at least in part to the fact that I went light on the chemo. I use chemo until my cancer stops progressing. Then I stop. It's left me with lots of options. I used Folfiri multiple times with positive results. I've only stopped using it because it made me terribly sick the last couple times I tried it. I could go back to Folfox (yikes, just the thought of that makes my hands hurt!). Avastin seems to still be working for me. I haven't yet tried Erbitux. I haven't yet used the oral 5FU (I can't remember the name of it).

I don't know if this is why I'm still here or rather if I'd be doing a lot better if I had finished my courses of chemo - I do have liver mets, bone mets, lymph node mets - I'm not exactly a picture of health here. I'll never know for sure, I just know it's worked for me. I've been able to balance treatment with quality of life. And I'm still here enjoying my kids. My doctor was skeptical at first. Now he's totally on board with my short stints of chemo. He's also one to NOT do chemo if I feel good. I have a scan next week, we'll see what it says. If the cancer is progressing fast, I guess I'll have to sign up for more chemo. But it's not that devastating because I know it'll only be for a couple months.

You might want to give this approach a try. Perhaps you could do just four rounds of Folfox and scan to see what's happening. If the cancer is controlled, why not take a break and save the rest of the Folfox for when you need it more? I am just one person. This has worked for me. It might be totally wrong for anyone else. I just wanted to post it for consideration. I do feel lucky to have so many chemo options still available to me.

Take care and best of luck as you head back into treatment.
Age 45; Stage IV, mets to liver, nodes and bones.
Dx 12/05; Chemoradiation, surgery, Folfox, Folfiri, Folfiri, Folfiri, Folfiri
Intrathecal pain pump 3/09 (works great!)
Irinotecan / Erbitux 5/09 - ?
Two wonderful kids ages 7 and 5

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Gaelen
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Re: More bad news to add to the board

Postby Gaelen » Mon May 04, 2009 6:27 pm

suew wrote:I would love to try the Kanzious Machine...anyone know where they are doing it??


I could be wrong and perhaps there will be big announcements at the ASCO conference at the end of May, but it was my understanding that the Kanzius machine is not yet ready/approved for clin trials and testing in man.
Last summer the state of the procedure was that it was still blowing up non-human test objects.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

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wamo
Posts: 386
Joined: Tue Mar 04, 2008 11:19 am
Location: Fullerton, California
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Re: More bad news to add to the board

Postby wamo » Mon May 04, 2009 6:46 pm

Ooooo now THAT would be a bad day.
Hubby-9-05 IIIC Rectal 4/11nodes 40yrs*1-06 LAR FOLFOX *6-07 Mets Lungs-FOLFIRI,Erbitux,Avastin *5-08 Skull met *9-08 ClinTrial EPO906+Celebrex *mets liver,kidneys,adrenal gld *WBRT brain mets *1-09 Gemzar/Xeloda ***2-25-09 Paul entered Heaven's gates.


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