I went in for my treatment of folfiri today and reported a right lower back pain to my onc. He ordered up a CT immediately so I walked over to radiology and started drinking the contrast. They scanned me an hour and a half later and my onc had the results in 20 minutes. It turns out the back pain is my kidneys backing up and apparently the tumor has gotten worse and is pinching off my ureters. It's really hard to believe and my onc really didn't have a plan for chemo yet so I'm going to be off for a few weeks (I have a vacation in a couple more weeks and don't want to be just recovering from a new chemo if I take it next week).
He called a urologist and I guess they're going to stick a camera up my privates and install some tubes.
It's really hard for me to believe how bad things are - I basically feel fine, but it's getting worse inside. I guess it appears my liver and lungs are still good, but he didn't look in sharp detail at those - he said he kinda flipped through those images and wanted to zero in on the kidneys to see what was going on.
Getting worse, no more folfiri for me
Getting worse, no more folfiri for me
Last edited by joeyooser on Tue Mar 01, 2011 4:53 pm, edited 1 time in total.
Tim
Stage IIIc - 9/23 lymph nodes, poorly diff, 35yo father of 2.
Lap resection Jul 28 09 resulted in near-deadly leak
Finished chemo Feb '10; Takedown March '10;
Nov 2010 - carcinomatosis
May 2011 - Clinical Trial, failed out of trial, in hospice care
Stage IIIc - 9/23 lymph nodes, poorly diff, 35yo father of 2.
Lap resection Jul 28 09 resulted in near-deadly leak
Finished chemo Feb '10; Takedown March '10;
Nov 2010 - carcinomatosis
May 2011 - Clinical Trial, failed out of trial, in hospice care
-
Terry
- Posts: 5536
- Joined: Wed Oct 03, 2007 10:36 pm
- Facebook Username: Terry Minor
- Location: Silver Cliff, Wisconsin
Re: Getting worse, no more folfiri for me
I'm so sorry Tim. I don't know what else to say to you. This sucks! If your lungs and liver look like they're responding can they remove the tumor by your kidney? What about some type of radiation? Maybe you should see a radiation/oncologist and see what they have to offer. Just some ideas, I feel lost for words.
I am praying for you!
Terry
I am praying for you!
Terry
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!
-
NWgirl
- Posts: 6659
- Joined: Sat Feb 02, 2008 3:24 am
- Facebook Username: Belle Piazza
- Location: Battle Ground, Washington
Re: Getting worse, no more folfiri for me
Crap, crap, crap. I'm so sorry Tim - this just sucks. I wish I could help in some way. Sending strong thoughts.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model
Re: Getting worse, no more folfiri for me
Tim....so sorry about this new turn of events. Hoping that they can figure out some plan for you. Sending lots of positive thoughts and prayers your way!!
Elissa
Elissa
Wife of John, 52
Dx cc 9/3/10; Stage IV
14/25 LN; 2 liver mets
Lynch: MSH2; KRAS mutant
Colon resection 9/9
Various complications
12 rounds of FOLFOX/FOLFIRI
was called home on 4/30/11
Dx cc 9/3/10; Stage IV
14/25 LN; 2 liver mets
Lynch: MSH2; KRAS mutant
Colon resection 9/9
Various complications
12 rounds of FOLFOX/FOLFIRI
was called home on 4/30/11
Re: Getting worse, no more folfiri for me
sorry to hear the bad news it sucks
hang in there
hang in there
stage 3A surgery 6/6/6 finished chemo jan 07
11 5FU/12 Levcouorin/10oxaliplatim
port removed jun 07
anal fistula surgery oct 05 may 07 feb 08 sep 08 jun 09
11 5FU/12 Levcouorin/10oxaliplatim
port removed jun 07
anal fistula surgery oct 05 may 07 feb 08 sep 08 jun 09
Re: Getting worse, no more folfiri for me
Tim, I'm hoping this is just a bump in the road. You don't deserve any more bad news. I'm thinking along the lines of Terry...would radiation shrink the sucker so it wasn't pressing on your ureters?
Sending light and love your way,
Julie
Sending light and love your way,
Julie
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
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
Re: Getting worse, no more folfiri for me
Tim why Dr. Loggie is delaying HIPEC? Looks like it's your best option.
Dx at 39(12/2008), Stage IV, omentum mets,
0/16 lymph nodes positive,
right colectomy 1/2009,
FOLFOX + avastin 2/2009-7/2009
Thank You Colonclub! 2015
0/16 lymph nodes positive,
right colectomy 1/2009,
FOLFOX + avastin 2/2009-7/2009
Thank You Colonclub! 2015
Re: Getting worse, no more folfiri for me
Tim, I'm thinking of you sending some positive vibes. This just isn't fair.
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met
Re: Getting worse, no more folfiri for me
Russian27 wrote:Tim why Dr. Loggie is delaying HIPEC? Looks like it's your best option.
It seems this tumor in my pelvis is too hard to operate on as it is now. There was hope that folfiri would shrink it so it could be operated on.
Tim
Stage IIIc - 9/23 lymph nodes, poorly diff, 35yo father of 2.
Lap resection Jul 28 09 resulted in near-deadly leak
Finished chemo Feb '10; Takedown March '10;
Nov 2010 - carcinomatosis
May 2011 - Clinical Trial, failed out of trial, in hospice care
Stage IIIc - 9/23 lymph nodes, poorly diff, 35yo father of 2.
Lap resection Jul 28 09 resulted in near-deadly leak
Finished chemo Feb '10; Takedown March '10;
Nov 2010 - carcinomatosis
May 2011 - Clinical Trial, failed out of trial, in hospice care
-
Kathleen808
- Posts: 1761
- Joined: Sun Feb 08, 2009 12:49 am
- Location: Hawaii
Re: Getting worse, no more folfiri for me
Tim,
Man, I am sorry that your kidneys are having a hard time right now. I hope and pray your team can get you some relief. Keeping you in my prayers.
Aloha,
Kathleen
Man, I am sorry that your kidneys are having a hard time right now. I hope and pray your team can get you some relief. Keeping you in my prayers.
Aloha,
Kathleen
Kathleen
DH 1/09 3c 51yr rsct
Folfx 3/09
1 l nd 9/09 Flfri Avstn
PET clr 6/10
Folfri Avstn 7/10
ND 10/10
1/11 lng mets Flfri Avastn
ND 2/12
9/12 Flfri Avastn
10/12 grwth lng mts Erbtx Avstn Irintcn
1/13 stabl
9/13 grwth
8/16/14 passed into eternal peace
DH 1/09 3c 51yr rsct
Folfx 3/09
1 l nd 9/09 Flfri Avstn
PET clr 6/10
Folfri Avstn 7/10
ND 10/10
1/11 lng mets Flfri Avastn
ND 2/12
9/12 Flfri Avastn
10/12 grwth lng mts Erbtx Avstn Irintcn
1/13 stabl
9/13 grwth
8/16/14 passed into eternal peace
-
blakeswife
- Posts: 540
- Joined: Sun Jul 26, 2009 5:55 pm
- Facebook Username: kathy.mair
- Location: Utah
Re: Getting worse, no more folfiri for me
Oh Tim, I'm sorry to hear the latest. I'm just broken hearted.
I hope you have a great time on your vacation. You'll be well rested to come back & face this head-on.
Take care,
Kathy
I hope you have a great time on your vacation. You'll be well rested to come back & face this head-on.
Take care,
Kathy
DH Stage IV 10/07
Colectomy, Liver resection & RFA, 1/13 LN
12/07-5/08 Folfox/Avastin
7/09 recurrence-Peritoneum
9/09-12/09 Folfiri/Avastin
1/10-5/10 Xeloda/Avastin
9/10-current w/built in breaks
Colectomy, Liver resection & RFA, 1/13 LN
12/07-5/08 Folfox/Avastin
7/09 recurrence-Peritoneum
9/09-12/09 Folfiri/Avastin
1/10-5/10 Xeloda/Avastin
9/10-current w/built in breaks
Re: Getting worse, no more folfiri for me
Terry wrote:I'm so sorry Tim. I don't know what else to say to you. This sucks! If your lungs and liver look like they're responding can they remove the tumor by your kidney? What about some type of radiation? Maybe you should see a radiation/oncologist and see what they have to offer. Just some ideas, I feel lost for words.
I am praying for you!
Terry
Terry, it's not that lungs/liver are responding, it's that nothing bad has ever been there as of yet. Also, there's no tumor on the kidneys, it's a pelvic tumor that is not responding and it is pressing on the ureters. He called it hydronephrosis, which is urine backing up into the kidneys. I would have never guessed, as I seem to be peeing fine AFAICT.
I thought the back pain was a liver met, but apparently not.
Tim
Stage IIIc - 9/23 lymph nodes, poorly diff, 35yo father of 2.
Lap resection Jul 28 09 resulted in near-deadly leak
Finished chemo Feb '10; Takedown March '10;
Nov 2010 - carcinomatosis
May 2011 - Clinical Trial, failed out of trial, in hospice care
Stage IIIc - 9/23 lymph nodes, poorly diff, 35yo father of 2.
Lap resection Jul 28 09 resulted in near-deadly leak
Finished chemo Feb '10; Takedown March '10;
Nov 2010 - carcinomatosis
May 2011 - Clinical Trial, failed out of trial, in hospice care
-
SkiFletch
- Posts: 6361
- Joined: Mon Dec 07, 2009 3:39 pm
- Facebook Username: Michael Fletcher
- Location: Buffalo, NY
Re: Getting worse, no more folfiri for me
Well, at least you're not dealing with anything new? Dunno Tim, wish I had better words for ya man, you've had a rough streak of luck. Hoping some radiation or something else can help you out. Will keep praying for you
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married
Still NED and living life to the fullest
"Can any one of you by worrying add a single hour to your life."
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married
Still NED and living life to the fullest
"Can any one of you by worrying add a single hour to your life."
-
LivinginToday
- Posts: 66
- Joined: Tue Feb 22, 2011 11:42 pm
- Facebook Username: jrjoneshome@att.net
Re: Getting worse, no more folfiri for me
Tim:
Our thoughts and prayers are with you. One day at a time. . .
Our thoughts and prayers are with you. One day at a time. . .
Life Partner of Terry, 55
12/20/2010, colonoscopy confirmed obstruction in sigmoid colon
12/23/2010, colon resection; dx: colon cancer; Stage IV ; 9/21 LN, liver met and peritoneal carcinomatosis
Left this world 12/3/2012
12/20/2010, colonoscopy confirmed obstruction in sigmoid colon
12/23/2010, colon resection; dx: colon cancer; Stage IV ; 9/21 LN, liver met and peritoneal carcinomatosis
Left this world 12/3/2012
Re: Getting worse, no more folfiri for me
hopefully raadiation can shrink it. i think its good news its not on the kidney
try hard to enjoy your vacation. you deserve it.
try hard to enjoy your vacation. you deserve it.
age 56
11/16/09 DIAG low rectal tumor ST II T3N0M0
12/21/09 chemopump radiation
3/18/10 suregry colo-anal anastomosis, no nodes,.
4/29/10 Abcess infection
6/3/10 started 12 folfox sessions completed 10.
1/11/11 ileostomy takedown
11/16/09 DIAG low rectal tumor ST II T3N0M0
12/21/09 chemopump radiation
3/18/10 suregry colo-anal anastomosis, no nodes,.
4/29/10 Abcess infection
6/3/10 started 12 folfox sessions completed 10.
1/11/11 ileostomy takedown
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