Llooking to here from those that waited a loong time for surgery

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Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Llooking to here from those that waited a loong time for surgery

Postby Trying » Tue Jun 11, 2019 3:22 pm

Its been a year on chemo and im still not quite a candidate for surgery. Hopefully soon. Wanting to know how long those of you who waited over a year.

Nicole
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Llooking to here from those that waited a loong time for surgery

Postby Lee » Tue Jun 11, 2019 11:23 pm

Have you looked at getting a 2nd opinion at a major cancer hospital or cancer research center.

good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: Llooking to here from those that waited a loong time for surgery

Postby Trying » Wed Jun 12, 2019 10:49 am

Thanks lee! Ive checked it out. Guess I'll wait 3 more months and hopefully be ready then!!!!
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Detox
Posts: 61
Joined: Fri Apr 28, 2017 5:27 pm

Re: Llooking to here from those that waited a loong time for surgery

Postby Detox » Wed Jun 12, 2019 11:40 am

I know some surgeons refuse to do anything while others are more experienced and are thus obviously more willing to be aggressive and take more risks. So I think it certainly helps to do research and try to find the best doctor suited specifically to your case.

Also, some people will likely argue this but I've also read about patients being able to keep their disease at bay over long periods of time by natural methods, such as diet, exercise, taking care of oneself, etc.

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Llooking to here from those that waited a loong time for surgery

Postby juliej » Wed Jun 12, 2019 5:12 pm

Me, me, me! I had to wait about 15 months for my first surgery, so it does take awhile for some of us. I needed my (many) tumors to shrink to a more resectable size.

I would second the suggestion about going to an NCI-Designated cancer center because they are 1) more experienced in cutting edge treatments, and 2) more aggressive in their treatment options. Be proactive, be strong, and never give up!

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: Llooking to here from those that waited a loong time for surgery

Postby Trying » Thu Jun 13, 2019 1:37 pm

Thanks everyone!
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

AmyG
Posts: 371
Joined: Tue Dec 25, 2018 8:08 pm

Re: Llooking to here from those that waited a loong time for surgery

Postby AmyG » Fri Jun 14, 2019 12:10 pm

You've had your primary tumor removed, right?
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: Llooking to here from those that waited a loong time for surgery

Postby Trying » Sat Jun 15, 2019 12:16 pm

No. They take care of liver ones first here then the primary. I was confused at first but found out its pretty standard.
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020


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