T3cN2a, refusing chemotherapy?

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cancerposse
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Re: T3cN2a, refusing chemotherapy?

Postby cancerposse » Mon Feb 24, 2014 8:35 pm

I, too, have considered refusing chemo, which I'm supposed to start in another 2 wks. I am still gathering info but this board, along with 3 oncologists and my 2 surgeons (stage IVa cancer mets to liver, all resected, with 4/16 nodes removed having cancer), all say do the chemo. This board is helpful in this debate. The difficulty is that all the cancer we could see is now surgically removed but it can still be in my system. I especially like the idea that if the recommended FOLFOX has too many side effects, I could drop the Oxaliplatin. My oncologist also wants me to take Avastin. Has anyone experienced side effects with this drug?

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GrouseMan
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Re: T3cN2a, refusing chemotherapy?

Postby GrouseMan » Mon Feb 24, 2014 10:16 pm

My wife has been on FOLFOX + Avastin for about 6 months and is now on just the Leucovorin, 5-FU and Avastin. She started getting Avastin on her third FolFox treatment, as they wanted to make sure she was healed well from her resection of the primary. They could not remove the tumors from her liver spleen and lung at that time.

Overall, she handled this treatment very well. Next to no nausea, and limited cold sensitivity. Some hand and foot skin cracking, but not a lot of neuropathy. By her 11th treatment, she was just starting to get some in her big toes. Her worse side effect has been fatigue. Her platelets started to get below the levels they like to see them at so treatments 11 and 12, they reduced the Oxaliplatin some. Her CEA has dropped from 110 before the start of chemo to 3.3 recently. She has seen shrinkage in the spleen and liver mets. Lung mets have always been very small and are unchanged. She is now on the same schedule but without the Oxaliplatin her platelets are back to normal, and will continue this for the next 6 months.

So you see, it's not the HORROR story its made out to be. Some people manage FOLFOX relatively easily. When Avastin was added her BP did rise, but hers had always been low to begin with. So they gave her pretty low dose ACE inhibitor to maintain it in the normal range. She hasn't had any headaches, and and only gets occasional nose bleeds that don't Last but a minute or two. Usually when she blows her nose first thing of a morning.

Hope this helps with you anxiety.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

KWT
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Re: T3cN2a, refusing chemotherapy?

Postby KWT » Mon Feb 24, 2014 10:27 pm

Grouseman, do you know why the xelox standard is eight rounds and the folfox seems like most people do twelve?

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GrouseMan
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Re: T3cN2a, refusing chemotherapy?

Postby GrouseMan » Mon Feb 24, 2014 11:00 pm

kennyt wrote:Grouseman, do you know why the xelox standard is eight rounds and the folfox seems like most people do twelve?


Kennyt, off hand I don't know. FOLFOX has been around much longer, and this protocol has been modified several times as the data is continually looked at. Xelox is a relative new comer, and I suspect that the initial phase II trials with it in early testing showed more than 8 rounds not having as significantly increased response rate vs side effects. Phase II in smaller test groups is often how they come up with the dosing schedule. It's likely they may change their mind as time goes on. I have also seemed to notice Xelox seems to be preferred over FOLFOX in patients with rectal cancer in combination with radiation, based on comparing people's treatment history shared on these forums.

Another thing about Xeloda is that it forms 5-FU via a metabolism cascade in the liver, so that the 5-FU seems to me would be in greater concentration and available there than systemic, which might be beneficial given that is the primary organ colon cancer spreads to. So perhaps it's more effective in this regard. Unfortunately much of this is just educated guessing on my part. It would likely take me quite a lot of time and energy to find a definitive answer for you. And I no longer have the resources available I once had to search this out. This is probably best answered by your oncologist, if he or she even knows which is likely not IMHO, but you never know.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

Staci's team
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Location: Canfield, Ohio
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Re: T3cN2a, refusing chemotherapy?

Postby Staci's team » Tue Feb 25, 2014 8:47 am

kennyt wrote:Grouseman, do you know why the xelox standard is eight rounds and the folfox seems like most people do twelve?


Kennyt, I've learned over the past few years that a lot of the adjuvant (post-surgery) chemo regimens depend on the type of cancer and whether or not the patient has had any chemotherapy or chemoradiation prior to surgery. In my wife's rectal cancer case, her oncologist gave her "credit" for the Xeloda she took as part of her neoadjuvant chemoradiation, so she only did eight rounds of FOLFOX post-surgery, but her oncologist still considers her to have done twelve rounds of chemo. Since colon cancer patients often have surgery first and then move on to chemo, they generally get all twelve rounds.

Of course, this isn't always the case, but it's the best explanation I've heard as to the "eight rounds versus twelve rounds" question.


Chris
Husband to Staci, diagnosed at age 32
Clinical dx Stage II/III rectal cancer, 7/2009
APR surgery 11/09 leading to...
Pathological dx Stage IIIB, ypT3N1M0, 11/2009
http://www.caringbridge.org/visit/staciwills
Member of The Colon Club's Board of Directors

nkoske
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Re: T3cN2a, refusing chemotherapy?

Postby nkoske » Tue Feb 25, 2014 12:58 pm

kennyt wrote:Grouseman, do you know why the xelox standard is eight rounds and the folfox seems like most people do twelve?


My understanding is...

Standard adjuvant chemo is 6 months long (24 weeks). The Folfox cycle is 2 weeks long. Therefore 6 months of Folfox = 12 cycles. Xelox is a 3 week cycle. Therefore 6 months of Xelox is 8 cycles.

For those of us treated on rectal cancer protocols that were treated with Chemo/Rad. It's not uncommon for your Onc to give you credit for the chemo taken while doing radiation. I was given approximately 2 months credit. So only 4 months (16 weeks) of adjuvant Chemo (this is something that the NCCN guidelines for rectal cancers suggests).

NCCN Rectal Cancer Guidelines wrote:The use of a shorter course of adjuvant FOLFOX in rectal cancer (ie, 4 months) is justified when preoperative chemoRT is administered.


Which meant I did 6 cycles (rounded up) of adjuvant Xelox. It would be 8 cycles of Folfox
Nick, DX @ age 34, IIIB Rectal Cancer 10/2012
ChemoRad IMRT 11/2012
Laparoscopic LAR 1/2013 (No Ileo)
Post Surgery Path IIIB (2/15 LN)
Chemo 2/2013 (XelOx)
Currently NED, Graduated from Med Onc 10/2017

Swede
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Location: Sweden

Re: T3cN2a, refusing chemotherapy?

Postby Swede » Fri Jun 03, 2016 1:24 pm

I just got the results of my last scans. Everything looks good. So it seems my strategy of only four rounds xeloda, no oxaliplatin and no radiation paid off.

No more follow ups. The hospital considers me cured. Only colonoscopies every five years. Now I am almost down to the same cancer risk as the rest of the population.
LAR 2013-04-29. 45 yo RC T3cN2a 4/38 nodes. Vascular invasion. Mucinous moderately differentiated adenocarcinoma 10-13 cm from anus
Refused rad&oxi. 4 rounds of xeloda
May 2014 CT, MRI and PET suspicious peritoneal mets. Surgery June 2014 only benign granuloma. NED
2015-04-10 clean MRI abdomen/liver/pelvis, clean pulm x-ray.
2016-05-13 clean MRI abdomen/liver/pelvis, clean pulm x-ray, clean colonoscopy
Cured.

ams5796
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Joined: Fri Feb 06, 2009 10:07 am

Re: T3cN2a, refusing chemotherapy?

Postby ams5796 » Fri Jun 03, 2016 1:31 pm

Cured? Amazing and congratulations!



Ann
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

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NZJay
Posts: 640
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Location: NZ

Re: T3cN2a, refusing chemotherapy?

Postby NZJay » Sun Jun 05, 2016 12:07 pm

Swede wrote:I just got the results of my last scans. Everything looks good. So it seems my strategy of only four rounds xeloda, no oxaliplatin and no radiation paid off.

No more follow ups. The hospital considers me cured. Only colonoscopies every five years. Now I am almost down to the same cancer risk as the rest of the population.


Congratulations! Is 3 years NED the standard for "cured" where you live?
Here in nz, we only ct scan stage 3 annually until 3 years post resection and then monitor blood for a further 2 years before calling it "cured".
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

Swede
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Location: Sweden

Re: T3cN2a, refusing chemotherapy?

Postby Swede » Mon Jun 06, 2016 5:13 pm

Yes, 3 years NED with MRI abdomen/liver and CT lungs (although I insisted on conventional X-ray due to radiation risk) is considered "cured" in Sweden, stage 3. No more follow-up except colonoscopies every five years.

Consensus here is that after three years you are down to almost base-line level risk for new cancer.

Blood monitoring is not used here as it is considered low specificity (and low sensitivity as well).

NZJay wrote:
Congratulations! Is 3 years NED the standard for "cured" where you live?
Here in nz, we only ct scan stage 3 annually until 3 years post resection and then monitor blood for a further 2 years before calling it "cured".
LAR 2013-04-29. 45 yo RC T3cN2a 4/38 nodes. Vascular invasion. Mucinous moderately differentiated adenocarcinoma 10-13 cm from anus
Refused rad&oxi. 4 rounds of xeloda
May 2014 CT, MRI and PET suspicious peritoneal mets. Surgery June 2014 only benign granuloma. NED
2015-04-10 clean MRI abdomen/liver/pelvis, clean pulm x-ray.
2016-05-13 clean MRI abdomen/liver/pelvis, clean pulm x-ray, clean colonoscopy
Cured.

etaylor22
Posts: 8
Joined: Wed Nov 29, 2017 9:05 pm

Re: T3cN2a, refusing chemotherapy?

Postby etaylor22 » Wed Aug 01, 2018 9:50 pm

I realize this is an old thread. I'm yT3bN1. I refused extra chemo. Same reason as you. I applaud your decision as being the one for you. Sticking to your guns. I'm trying to do the same. ANy regrets? You will be at your five year mark. I haven't made one year yet. I don't regret refusing...yet. I hope I won't.
40yo
DX: Rectal Cancer (RC)
11/1/17 Blockage, CEA 4.0, Diagnosis IIIb T4a N1 M0
11/2/17 Colostomy
12/5/17 to 1/10/18 Radiation / Xeloda
2/14/18 MRI IIIb T3 N0 M0, yPT2, Radiology report "Successful treatment for rectal cancer."
2/26/18 LAR, temp loop ileostomy, surprise appendectomy. Misery scale 8, Pain scale 3
3/1/18 Restage 2?, Path-neg margins, 19 Lymph nodes neg
4/10/18 XR Barium Enema - ileo reversal leak test
4/27/18 Reversal
In Denial...Happiness Lost

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Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Re: T3cN2a, refusing chemotherapy?

Postby Atoq » Thu Aug 02, 2018 7:10 am

I am in Norway, stage IV with one lung metastasis, I did not refuse adjuvant chemo, but was not offered it either. So it depends on the protocol and there is no consensus on how useful it is.

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

Sammy2067
Posts: 13
Joined: Wed Jul 18, 2018 9:38 pm
Facebook Username: Laban Sam DeFriese

Re: T3cN2a, refusing chemotherapy?

Postby Sammy2067 » Fri Aug 03, 2018 11:12 am

Guys. Xeloda or Capecitbine (oral FU) by itself is very effective and very tolerable. The potential Benefit is worth the risk. The Oxyplatin is the bigger problem. You may or may not be able to deal with it.

I would do the chemo. Xeloda mono therapy is definitely worth the risk. Its a no brainer actually.

Also, add the right diet and exercise. Triple threat is the way to go. Xeloda, Diet, and exercise.
51
1-15-16 to 3-22-18: On and off Rectal Bleeding
3-22-18: CSoscopy Rectal Can
4-8-18: MRI: T3(c) N0 M0
5-4-18 Short Course RT 5 days
5-13-18: Robot Lap LAR TME
5-20-18: Nodes: 0/21 LVI: present, Perinerral Invasion: Present, All Margins: Negative
5-21-18 Stage 2a
5-25-18: Oncol discuss if Chemo needed for Stage 2a. 3 months Capox
7-01-18 Oxy cause vomiting/Nasea.
7-06-18: Oncolt discontinued Oxy
7-23-18: Xeloda Monotherapy
7-23-18: CEA post surg .5, CA19-9 2.9

rp1954
Posts: 1855
Joined: Mon Jun 13, 2011 1:13 am

Re: T3cN2a, refusing chemotherapy?

Postby rp1954 » Sat Aug 04, 2018 11:51 am

My wife has always been mCRC. We have always turned down oxi- and iri- (!) but used an oral 5FU drug with celecoxib and/or targeted cimetidine (let's say CA199 over 18 or 22), with IV vitamin C (best for KRAS/BRAF mutants) and select high potency supplements. We did not include celecoxib long term until we felt we could monitor and attenuate the small cardio risks that come with NSAIDS including coxibs but I have to say celecoxib can be a potent anti-CRC molecule.

Based on others' experience and recent papers, I would suggest that you look at several months highest dose Xeloda (capecitabine, the only US oral 5FU prodrug) that you can stand, and perhaps some nicer extras. The recent conventional papers show that most of chemo's survival benefit is achieved with the first several months treatment if your CRC is not the wrong molecular biology or undiagnosed mCRC, often micrometastatic CRC.

I also agree with Sammy.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

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horizon
Posts: 1670
Joined: Tue Apr 12, 2011 10:10 pm

Re: T3cN2a, refusing chemotherapy?

Postby horizon » Sun Aug 05, 2018 8:23 am

Everyone has to come to their own decision that's right for them. For me I could not live with the regret if it came back and I hadn't thrown everything that I could at the cancer when I had the chance. I have no regrets about doing Oxi + Xeloda.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?


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