Stage 4 currently NED- what would you do now?

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Eternal optimist
Posts: 15
Joined: Sun May 01, 2016 9:26 am

Stage 4 currently NED- what would you do now?

Postby Eternal optimist » Thu Aug 16, 2018 4:34 pm

Hi all,

I'm just looking for opinions on what treatment I should have now. I was diagnosed stage 4, with spread to para aortic nodes, 3 1/2 years ago. Since then I have had 2 recurrences, 1 to para aortic nodes (PALNs) and 6 months later PALNs again, plus possibly lungs. The PET scan that found my second recurrence was pretty horrific, but none of the hot spots could be found on my CT so were assumed false positives, but there is a chance I had more extensive Mets.

After 6 months of Folfiri and Cetuximab I am now NED. I'm so happy, and looking forward wondering what treatment to continue. I am in the UK and Avastin is not available to me unless I pay privately, which I'm not really in a position to do. I was keen to continue 5fu and Cetuximab as a maintenance chemo, but my onc is reluctant. She said there is some evidence that Cetuximab taken long term causes drug resistant Mets. My bloodwork at the moment is all normal. My CEA nd CA 125 hasn't been raised since my primary tumour was removed 3 years ago. My highest CA19-9 has been 44, this was during chemo my last round of chemo, it then dropped to normal.

My onc's idea of not having any chemo for now (untill my next recurrence) is very tempting to me, I have had coming up to 35 rounds now over the years and that's left me feeling tired. But ultimately I want to be around for as long as possible, whatever it takes. So I'm interested to hear what you would do in my position- what chemo would you want as maintenance, or would you take the chemo break?

Thanks
Diagnosed age 34 in Feb 2015, sigmoid tumour & PALNs
CapOx Mar-Oct 15
Resection of colon and para aortic node Dec 15. Histology T3a N2 M1a
Capecetabine Apr- Nov 16
Dec 16 - PALN recurrence, Radiotherapy
Aug 17 - FDG uptake in para aortic and retro peritoneal nodes, peritoneum, ovary plus small nodues on lungs. Only enlarged Palns and small lung nodules visible on CT, but possible spine Mets seen.
Sept 17 Folfiri and Cetuximab
April 18 NED
July 18 - surgery to remove benign peritoneal inclusion cyst

rp1954
Posts: 1363
Joined: Mon Jun 13, 2011 1:13 am

Re: Stage 4 currently NED- what would you do now?

Postby rp1954 » Thu Aug 16, 2018 5:00 pm

"[CA199] then dropped to normal.
uh, "normal" on CA199 is not really useful discussion for you, since they model it on pancreatic cancer detection. Specific CEA and CA199 value series are the things to compare. Vs CRC detection, response and biology. CA199 probably will drop for a while after heavy chemo to some bottom and then can be useful for detection of rises again. For us, the maintenance and interpretation of CA199 values, "normal" between 18 and 39, with low inflammation, was some the most important territory for about seven years. The actual time series on CA199 measurements were crucial on some occasional critical decisions.

Since you're considered in a chemo later or forever category, how to maximize length of scanned remission and quality of life are big issues.

We strongly believe in continuous chemistry at home to suppress different avenues of cancer's advance, a lot based on natural chemistry. The real issues - how to, how nice, how effective, and how much. You investigated some on one clinic before, on that Care Oncology Clinic with drug cocktails [more experience or comments?].

One method, might be immune and anti-inflammation treatments off label, going into integrative medicine with fewer mild drugs and more high powered immune and anti-cancer supplements. I know UK has become problematic to buy high potency supplements since the EU Codex regs, so there's that too. Benefits are serious to us and elsewhere, we order and go out of country for supplies.

Since you are in UK, UFT may still be available; we prefer UFT over Xeloda for immunochemo treatment for quality of life and tx longevity with an actual chemo containing formula. UFT, 5FU and Xeloda might conflict with 1-2 of the COC drugs, like mebendazole.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

mpbser
Posts: 437
Joined: Wed Apr 19, 2017 11:52 am

Re: Stage 4 currently NED- what would you do now?

Postby mpbser » Fri Aug 17, 2018 7:48 am

Tough call. I'm not sure what my husband would do if he was in your shoes.

If you go the no-chemo route, there are wonderful anti-inflammatory supplements out there. My recent blood work showed the lowest inflammation biomarkers, optimal levels, in the past seven years since being monitored.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

e_enyedy
Posts: 14
Joined: Sat Nov 25, 2017 5:28 pm

Re: Stage 4 currently NED- what would you do now?

Postby e_enyedy » Sat Aug 18, 2018 7:49 pm

Has a Stage 1 colon resection, no chemo afterwards but watchful eyes( scan every 3 months)After 2 years a met showed up in the "pre-sacral space".
Had 8 sessions of Folfox (Oxaliplatin-5FU-Avastin),which pushed the cancer into remission. During the following 2 years have been on Folfox + Avastin.
3 months ago the Oncologist told me that we were stopping the Avastin and it was up to me whether I wanted "maintenance Chemo" taking just the Capecitabine (5FU).
So, I asked him: "If you were in my place, what would you do?"
and he said: "stay on the 5FU maintenance"
So, I stayed on the "maintenance chemo" (5 FU only, no Avastin) (if you look around -trials,etc- you will see that the Avastin contributes a maximum 0f around 7% in lengthening the survival rates)
(BTW: I have a friend, her breast cancer went into remission some 11 years ago - and since then she has been on non=stop maintenance chemo.)
Hope I was of some help

the best

E
77 yrs male (73 at Dx)
2/13 Dx Carcinoma, Sigmoid Colon
3/13 Sigmoid Colon Hemicolectomy,( 12"+)
3/13 Pathology Staging: T1N0M0; no follow-up chemo
5/15 Recurrence: in pre-sacral space -no other mets detected (Instantly became Stage IV)
5/15 Started 8 sessions of Folfox + Avastin
11/15 Finished chemo, PET/CT: NED
11/15 Started Xeloda+ Avastin every 3 weeks. Still Doing it.
Still NED -(Hope treatment keeps working)

Eternal optimist
Posts: 15
Joined: Sun May 01, 2016 9:26 am

Re: Stage 4 currently NED- what would you do now?

Postby Eternal optimist » Wed Aug 22, 2018 8:52 am

Hi all, sorry for my slow reply, I was away over the weekend and our break turned out much busier than I had envisaged so I didn't get back online. Thank you for your responses, they have helped me think more clearly about my decisions. I am on the COC protocol, and also take various supplements (I have always read and re-read you previous posts RP1954 and take many of the supplements you recommend). The only ones I don't take but I often wonder about are celebrex and cimetidine, they are prescription only in the UK but I havent tried to get them prescribed, and also could source them from abroad. My CA19-9 has never been recorded above 44 yet, but only started being tracked after my primary was removed.

So I think I will suggest taking xeloda or UFT going forward, and carry on my supplements and the COC protocol, plus get back on the wagon with my diet and exercise. Thanks again
Diagnosed age 34 in Feb 2015, sigmoid tumour & PALNs
CapOx Mar-Oct 15
Resection of colon and para aortic node Dec 15. Histology T3a N2 M1a
Capecetabine Apr- Nov 16
Dec 16 - PALN recurrence, Radiotherapy
Aug 17 - FDG uptake in para aortic and retro peritoneal nodes, peritoneum, ovary plus small nodues on lungs. Only enlarged Palns and small lung nodules visible on CT, but possible spine Mets seen.
Sept 17 Folfiri and Cetuximab
April 18 NED
July 18 - surgery to remove benign peritoneal inclusion cyst

rp1954
Posts: 1363
Joined: Mon Jun 13, 2011 1:13 am

Re: Stage 4 currently NED- what would you do now?

Postby rp1954 » Wed Aug 22, 2018 9:12 pm

All my cimetidine and celecoxib (Celebrex) experience is with UFT, the mild oral chemo, none with your cocktail. Celecoxib has been the more rapidly active medicine these last 5 years. A 44 is a high value of CA199 for colon cancer but may overlap other benign conditions that need to be considered. We have used CA199 with low inflammation and stable blood sugar, and CA199 was very well behaved, sensitive indicator of CRC activity when we were doing in dosage testing on mets before surgery, and after surgery with a low cancer residue.

That COC cocktail has a least one probable incompatibility for 5FU, UFT and Xeloda: mebendazole. I would consult, look around for medical support, and monitor with frequent blood tests the first 2-3 months especially CBC and liver function tests. We did basic blood tests at 2 week intervals when we needed cancer response data and (lack of) toxicity data.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

WarriorSpouse
Posts: 127
Joined: Tue Aug 16, 2016 9:02 pm

Re: Stage 4 currently NED- what would you do now?

Postby WarriorSpouse » Thu Aug 23, 2018 6:10 am

I am sorry to read that recurrence has happened in the past.

My wife has had a similar initial diagnosis and her Oncologist from Dana Farber, Boston, MA has recommended maintenance chemo, specifically Zeloda pills for two weeks on and one week off. At the beginning of the treatment cycle, she is given a bag of Avastin. She has been NED with no signs of recurrence. She is about at 4 years post diagnosis.

Good luck in your journey forward. Good thoughts from across the pond:)
WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot


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