What to expect?

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Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: What to expect?

Postby Jacques » Fri Jul 21, 2017 2:08 am

Foreveryoung wrote:... I am going with Memorial Sloan for my treatment and just met with my oncologist. I'll be going on a four month treatment of FOLFOX followed by two months of radiation therapy. I'm going to opt for the pills and IV instead of the med port. Does anyone have any advice one way or another?...

My advice right now would be to get a clarification of your exact treatment regimen from your oncologist. You say that you will be doing FOLFOX, but that you are going to "... opt for the pills and IV instead of the med port..."

In my opinion, if you will indeed be placed on FOLFOX, it will not possible for you to opt for these particular options. I think you could opt for these if you were assigned to CAPEOX, but not if you are assigned to FOLFOX.

Can you check with your oncologist about this? Thanks

Foreveryoung
Posts: 15
Joined: Thu Jun 22, 2017 9:39 am

Re: What to expect?

Postby Foreveryoung » Sun Jul 23, 2017 5:18 pm

Jacques wrote:
In my opinion, if you will indeed be placed on FOLFOX, it will not possible for you to opt for these particular options. I think you could opt for these if you were assigned to CAPEOX, but not if you are assigned to FOLFOX.

Can you check with your oncologist about this? Thanks


I meant to say, I have two options to administer FOLFOX, by the port or by pills.

After meeting with my radiation oncologist, he is telling me that they will use a shield to help reduce the chance of infertility. I'm looking into sperm banks, but maybe its because I'm looking to start a family in a few years, I want to hold off on chemo and radiation until I give supplements and eastern medicine a try. Do you think this is foolish? I'm either stage 2 or 3. Invasion with no signs of cancer in my lymph nodes.
33 y/o M DX June 2017 (RC lower)
Rectal adenocarcinoma (T3N0M0)
CAPOX - 3 months (OX chemo every three weeks, followed by two weeks daily CAP pills)
chemoRT - 25 daily sessions
LAR robotic with temp loop ileo - April 4, 2018
0/23 Nodes
Illeostomy reversal - July 25, 2018
8.0 cm from AV
4.3 cm from sphincter complex
CEA [2.5 on 8/17; 3.7 on 3/18; 2.8 on 6/18]

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: What to expect?

Postby Basil » Sun Jul 23, 2017 8:27 pm

There's something you need to ask about - PROSPECT trial. It's not for everyone and I'm not sure of the requirements, only than it's geared towards stage iii-ers. It's using FOLFOX pre-surgery instead of chemorad as the pre-surgery treatment. Avoids the nasty side effects of radiation issues. I'm on it and had a very positive response to chemo-only. Can't speak for anyone else but my doctors are thrilled.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: What to expect?

Postby Basil » Sun Jul 23, 2017 8:30 pm

Oh, and IMO eastern medicine is useless. This is cancer. Your life is on the line. My advice is to seek the best onc care you can at the best hospital you can get into. And that's a STAT recommendation.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

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LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: What to expect?

Postby LeonW » Mon Jul 24, 2017 5:49 am

agree 200%
for Basil . . . . What does STAT stand for?
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

User avatar
Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: What to expect?

Postby Jacques » Mon Jul 24, 2017 7:09 am

LeonW wrote:agree 200%
for Basil . . . . What does STAT stand for?

STAT

User avatar
horizon
Posts: 1668
Joined: Tue Apr 12, 2011 10:10 pm

Re: What to expect?

Postby horizon » Mon Jul 24, 2017 8:13 am

Basil wrote:This is cancer. Your life is on the line. My advice is to seek the best onc care you can at the best hospital you can get into. And that's a STAT recommendation.


Could not agree more with this.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 12 years NED). Is this real life?

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: What to expect?

Postby NHMike » Mon Jul 24, 2017 11:30 am

horizon wrote:
Basil wrote:This is cancer. Your life is on the line. My advice is to seek the best onc care you can at the best hospital you can get into. And that's a STAT recommendation.


Could not agree more with this.


I would agree with this as well. It's hard getting up to speed on this and nobody that I worked with talked about the urgency in getting started on treatment. It's about five weeks for me from biopsy to treatment which should have been a lot shorter but there are delays in medical systems, and in getting tests and in scheduling services. If I had it to do over again, I'd be a lot more efficient about it. I imagine most of us aren't familiar enough with the cancer healthcare ecosystem to do it really efficiently the first time. That and the emotional shock of finding out.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: What to expect?

Postby mariane » Mon Jul 24, 2017 2:54 pm

Much depends on the size and location of the rectal tumor. Chemoradiation is standard now. However some oncologist and colorectal surgeons think out of the box. I had tumor localized around 10cm from the sphincter and not very large. My surgeon took it out and even instantly reconnected the colon without chemoradiation. It is possible but risky procedure. 20% of instant rectal anastomosis fail and cancer can spread. My bold surgeon thought I was young, otherwise healthy so he took the risk.
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: What to expect?

Postby NHMike » Mon Jul 24, 2017 3:01 pm

mariane wrote:Much depends on the size and location of the rectal tumor. Chemoradiation is standard now. However some oncologist and colorectal surgeons think out of the box. I had tumor localized around 10cm from the sphincter and not very large. My surgeon took it out and even instantly reconnected the colon without chemoradiation. It is possible but risky procedure. 20% of instant rectal anastomosis fail and cancer can spread. My bold surgeon thought I was young, otherwise healthy so he took the risk.


My surgeon said that there was a possibility that we could just do a surgery and then chemo afterwards but that was before the MRI. She felt around and thought that the tumor was mobile enough so that it might have just been a tumor on top of a large polyp but it turned out not to be the case. So, yes, a good surgeon can recognize the options that are there with all of the imaging available.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT


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