Time to decide whether to do chemo or just observe

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DanInMN
Posts: 86
Joined: Mon Apr 02, 2012 11:18 pm

Time to decide whether to do chemo or just observe

Postby DanInMN » Mon Jul 03, 2017 3:08 pm

Four years after resection, and 3.5 years since the completion of Folfox, a small met appeared in my lung. It took 5 years from surgery to get big enough to biopsy. I had it removed in an super-easy lung resection 6 weeks ago. It was 1 cm in size, and the tissue removed had clean margins.

My oncologist walked me through the decision making process, talked to me about the available data, and suggested that we just do CT's every 3 months for a while to see if anything else pops up. She did offer chemo if it would help ease my mind, but said the data is not rich enough to tell if chemo has any effect of recurrence in my situation. I took my info to a research hospital, and another oncologist went through it and told me the exact same thing. All options are reasonable. There may be some benefit to chemo, or it may just do some damage without doing anything. And there may be nothing there for the chemo to work on.

Also, because my cancer is so slow growing, it may be unlikely that a cancer cell floating around in me would eat enough of the chemo.

But I need to decide this week whether to follow the oncologists' advice and just keep an eye on things, or take their slightly less enthusiastic advice and jump back into chemo. I would have the choice of Xeloda or 5FU.

Of course, I REALLY don't want to do chemo again, and I'm afraid that is clouding my judgement.
Dan - Male - Age 41
3/5/2012 - Colonoscopy - dx: sigmoid colon cancer
3/29/2012 - Colon Resection - growth through wall, 1 of 23 nodes, 4 tumor deposits - dx: Stage 3b
5/7/2012 - Begin Folfox
10/10/12 Finish Folfox
10/22/12 CT scan = NED
4/17/17 Lung nodule discovered to be colorecretal cancer met
5/12/17 Met removed

Lee
Posts: 5076
Joined: Sun Apr 16, 2006 4:09 pm

Re: Time to decide whether to do chemo or just observe

Postby Lee » Mon Jul 03, 2017 6:46 pm

As much as I hear you wanting to do chemo. Since they found this so far out, yes the recommendation is no chemo. There is another member who had a liver met 3 years out. They did surgery butt no chemo, she is NED today. Her name is Diane Tavegia (dianetavegia is user name) if you want to follow her journey. She also started a thread titled "For stage III's: NED for how long now.

Good luck, scary terrain for sure, butt yes they are leading more and more no chemo this far out.

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 - 10 years and counting!

PainInTheAss
Posts: 655
Joined: Tue Jul 02, 2013 3:08 am

Re: Time to decide whether to do chemo or just observe

Postby PainInTheAss » Tue Jul 04, 2017 6:09 pm

If it were me, I would do Xeloda, but that's mainly because I had almost no side effects so it was almost like not doing chemo. If there is even one more met still too small to be seen on a scan, I think it would be worth doing Xeloda. If chemo doesn't do much to circulating tumor cells, why does post surgery chemo have any benefit? I'm not seeing the logic here, but, then again, I'm not a doctor.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

User avatar
Maia
Posts: 2414
Joined: Fri Aug 24, 2012 8:00 am

Re: Time to decide whether to do chemo or just observe

Postby Maia » Tue Jul 04, 2017 7:11 pm

Dan, IF you're not sure about doing chemo, one alternative would be doing an immunotherapy trial with a vaccine to prevent recurrence Immunotherapy trial for those NED: viewtopic.php?f=1&t=56485 A fellow on this board, Maellous, went recently for it, because he had a DPD deficiency --a problem to metabolize 5-FU, so chemo was not possible.

Someone who explored (is exploring) other alternative is Sophy, who underwent a very extensive resection of lung mets years ago and is doing Xeloda --at LOW dose-- plus a NSAID --ADAPT protocol, a total oral regimen-- during the almost 3 last years, as a measure to prevent recurrence viewtopic.php?f=1&t=57644&p=454418 The ADAPT aims to target the stem cancer cells, not the rapidly dividing cells. Otherwise, as PainInTheAss said, doing chemotherapy at the MTD --maximum tolerated doses--, without visible cancer, doesn't really make many sense --for certain literature. Low dose chemo acts more as immunomodulation than as cytotoxic.

TXLiz
Posts: 195
Joined: Thu Sep 22, 2016 3:31 pm

Re: Time to decide whether to do chemo or just observe

Postby TXLiz » Tue Jul 04, 2017 8:38 pm

How long do they say you should do chemo for, if you choose to take that route?
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"

DanInMN
Posts: 86
Joined: Mon Apr 02, 2012 11:18 pm

Re: Time to decide whether to do chemo or just observe

Postby DanInMN » Wed Jul 05, 2017 8:26 am

PainInTheAss wrote:If it were me, I would do Xeloda, but that's mainly because I had almost no side effects so it was almost like not doing chemo. If there is even one more met still too small to be seen on a scan, I think it would be worth doing Xeloda. If chemo doesn't do much to circulating tumor cells, why does post surgery chemo have any benefit? I'm not seeing the logic here, but, then again, I'm not a doctor.


What they are saying is that my specific cancer is so slow growing that it may just not uptake enough chemo.

They know what percentage of people have a recurrence after a primary tumor is removed. And they know how much that is decreased by chemo. There is little data to say that chemo reduces additional recurrences in my particular circumstance.
Last edited by DanInMN on Wed Jul 05, 2017 8:39 am, edited 1 time in total.
Dan - Male - Age 41
3/5/2012 - Colonoscopy - dx: sigmoid colon cancer
3/29/2012 - Colon Resection - growth through wall, 1 of 23 nodes, 4 tumor deposits - dx: Stage 3b
5/7/2012 - Begin Folfox
10/10/12 Finish Folfox
10/22/12 CT scan = NED
4/17/17 Lung nodule discovered to be colorecretal cancer met
5/12/17 Met removed

DanInMN
Posts: 86
Joined: Mon Apr 02, 2012 11:18 pm

Re: Time to decide whether to do chemo or just observe

Postby DanInMN » Wed Jul 05, 2017 8:28 am

TXLiz wrote:How long do they say you should do chemo for, if you choose to take that route?


The standard run for post-op colorectal cancer. 6 months.
Dan - Male - Age 41
3/5/2012 - Colonoscopy - dx: sigmoid colon cancer
3/29/2012 - Colon Resection - growth through wall, 1 of 23 nodes, 4 tumor deposits - dx: Stage 3b
5/7/2012 - Begin Folfox
10/10/12 Finish Folfox
10/22/12 CT scan = NED
4/17/17 Lung nodule discovered to be colorecretal cancer met
5/12/17 Met removed

musicluvr
Posts: 89
Joined: Fri Feb 21, 2014 8:07 pm
Location: Grand Rapids MI

Re: Time to decide whether to do chemo or just observe

Postby musicluvr » Wed Jul 05, 2017 12:23 pm

Same here. One spot on one lung. All others shrank with Erbitux. Been on 3 month break, scan at end of July. Can't wait to hear recommendations if everything is still stable!
55 yo female
Dx CRC 2/17/14
T3 N1 M0
Perm colostomy 3/14
12 rounds 5FU
Small bowel obstruction 8/14
Multiple nodules both lungs 6/15
FOLFIRI + ERBITUX and 5FU started 8/11/15
Irinotecan reduced 40% , October
Chemo for life
12/15 NED, holiday next 2 treatments, then 5FU only
Mets are back 3/16
Erbitux + Irinotecan only; dropping 5FU
CT Scan 6/16 shows mets still there
5/17 been on Erbitux only
One met, lower right lung 4mm
Chemo break for 3 months
5 mets now on CT Scan. Back to Erbitux

DanInMN
Posts: 86
Joined: Mon Apr 02, 2012 11:18 pm

Re: Time to decide whether to do chemo or just observe

Postby DanInMN » Wed Jul 05, 2017 3:15 pm

musicluvr wrote:Same here. One spot on one lung. All others shrank with Erbitux. Been on 3 month break, scan at end of July. Can't wait to hear recommendations if everything is still stable!


I hope your scan in July is excellent. Enjoy your break!
Dan - Male - Age 41
3/5/2012 - Colonoscopy - dx: sigmoid colon cancer
3/29/2012 - Colon Resection - growth through wall, 1 of 23 nodes, 4 tumor deposits - dx: Stage 3b
5/7/2012 - Begin Folfox
10/10/12 Finish Folfox
10/22/12 CT scan = NED
4/17/17 Lung nodule discovered to be colorecretal cancer met
5/12/17 Met removed

lpas
Posts: 972
Joined: Wed Nov 19, 2014 11:11 pm

Re: Time to decide whether to do chemo or just observe

Postby lpas » Wed Jul 05, 2017 6:08 pm

Maia wrote:Dan, IF you're not sure about doing chemo, one alternative would be doing an immunotherapy trial with a vaccine to prevent recurrence Immunotherapy trial for those NED: viewtopic.php?f=1&t=56485 A fellow on this board, Maellous, went recently for it, because he had a DPD deficiency --a problem to metabolize 5-FU, so chemo was not possible.

Someone who explored (is exploring) other alternative is Sophy, who underwent a very extensive resection of lung mets years ago and is doing Xeloda --at LOW dose-- plus a NSAID --ADAPT protocol, a total oral regimen-- during the almost 3 last years, as a measure to prevent recurrence viewtopic.php?f=1&t=57644&p=454418 The ADAPT aims to target the stem cancer cells, not the rapidly dividing cells. Otherwise, as PainInTheAss said, doing chemotherapy at the MTD --maximum tolerated doses--, without visible cancer, doesn't really make many sense --for certain literature. Low dose chemo acts more as immunomodulation than as cytotoxic.


I'm going to second Maia's recommendations here. I like both of these options. Even if you do nothing else, I'm thinking celecoxib might be helpful.
11/14: Dx sigmoid CC @ 45yo
12/14: laparoscopic colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS (A146T), TP53, SMAD4, ERBB2, pre-surgical CEA 1.0
2/15 to 7/15: XELOX, celecoxib & many supplements
3/16: Ovarian mass, rt ovary removed. Benign fibroid.
9/16: clean colonoscopy
3/17: clean CT
Post-chemo CEA: 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4, 1.4, 1.3, 1.3, 1.6
Mom to a 3 & 5-year-old

User avatar
Sophy
Posts: 231
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Re: Time to decide whether to do chemo or just observe

Postby Sophy » Fri Jul 14, 2017 4:54 am

It has been a while ago but we old timers remember Traveller 101, Carmen, Cherie and many many other friends who were called cured after completing ordinary chemo treatment left them NED but then aftertime the non evident tumours grew so they became recurrence or spread they found extra treatment was just an unpleasant way of slowing disease progression before dying.

In my six years of dealing with mcrc my doctors have confirmed that cancer cannot be cured with chemo - but they only told me because I asked the right questions. So many people think that chemo is a treatment so it is a cure. It isnt a cure, it can slow disease but not destroy it.

I have taken the paranoid route of never believing a cancer doesn't exist just because it is too small to see yet. The three lung surgeries I had may have taken out all visible tumours. I hope that the celecoxib, xeloda and cimetedine will keep anything left behind under control. Exposing the tumour stem cells to poison and death.

It is great that many other people are looking at this too


Fiona
Xxxxx
dx T3N1M0 Feb 11 when children age 11, 7 and 2 - now age 17, 14 and 9
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung
Aug 14 Started Xeloda and Celebrex (ADAPT) 3 year course
May 2017 CT shows still NED

sdino
Posts: 35
Joined: Tue Mar 28, 2017 5:32 pm

Re: Time to decide whether to do chemo or just observe

Postby sdino » Fri Jul 14, 2017 8:08 am

Hi DanInMN – When we first found out about my Wife’s CRC, we of coarse were under the impression to go after it full throttle and throw the kitchen sink at it (Newbies). But over 6 months into this deal and conversations with 2 Oncs (Roswell & Sloan), that may not be the best approach for right now . We are in the middle of a 2month chemo break. Here’s why at least in our case:
• 12 Rnds Chemo took a little toll on my wife with side effects.
• Some Shrinkage of tumor in Colon and lymph nodes nearby
• Some shrinkage/stability in Lung Mets.
• Since Both Oncs agreed since there is some shrinkage, here is their thought processes 1. Save chemo for another day when its really-really necessary. 2. Don’t beat up her body to hard w/chemo right now incase of surgery or immunology is needed down the road. 3. Don’t give the cancer cells a chance to become immune to the FolFox+Avastin+Oxi just yet.
Now this could all change with our next scheduled CT Scan scheduled for 7/26/17. Then we move forward from there. Wishing you much success Dan.
Caregiver for Wife 52 yrs old
DX: 11/16-CC sigmoid colon 3 cm, Lung Bio-Adenocarcinoma Stg IV
Mets: 1.2 cm now 7 mm lung w/14 other nodules less than 6 mm. 7/17 growth in Mets
MSS, KRAS-mut G12D; TP53;
Completed 12 rounds Folfox/Avastin + Oxi 11/16 to 5/17
8/17 Start Xeloda + Avastin
CT Scans: 11/16; 1/17 lung mets/colon shrinkage; 5/17 colon & lung met shrinkage, 7/17 disease progression lungs/colon
CEA: 16 - 11/16; 4 – 12/16; 0.5 – 2/17; 0.6 - 5/17; 2.6 - 7/17


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