More questions on maintenance.

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Achilles Torn
Posts: 108
Joined: Fri Dec 16, 2016 2:41 pm

More questions on maintenance.

Postby Achilles Torn » Fri Nov 17, 2017 12:43 pm

Hi All,
I met with my Onc this week to discuss plans going forward. My recent CT continued to show "no evidence of bulky metastatic disease" (my Onc's term - which I prefer to "NED" ). I have been doing 5FU and Bevicuzimab for 6 treatments after my initial FolFox+Bev of 12 - which I tolerate fairly well apart from fatigue and constipation. Going forward my Oncologist said he can't recommend any course based on settled medical science but he would stop chemo and just scan until progression (if it were him). He considers me a well-informed patient and has left it completely up to me... but he encouraged I consider the long-term/quality of life questions (I think he has more optimism than me as to how long this will last). While this is nice it also makes for a very tough decision on my part and I'm reaching out again for your thoughts.

The current options I am considering are:
1 - Continue with 5FU and Bevicuzimab infusions but move to every 3 weeks.
2 - Switch to Xeloda pills daily with Bev infusion every 3 weeks.
3 - Take a 5/6 week break to clear chemo for a PET scan and then re-assess. (I trust PET's more than CT's and would really like to check the metabolic activity in the nodes)

I recognize I can't provide enough information on my side effects and QOL issues (such as how the pump interferes with my 4-year-old's cuddles) I'm interested in what you guys think from an efficacy perspective (ie: is a 5 week break a risk worth taking ? Considering Maia and rp's historical posts -should I consider a switch to daily Xeloda as it may be more effective long term ? Is it too soon to decide to switch to 3 weeks when 2 weeks has been working ?)

As the most informed community on the web - I appreciate any and all thoughts.

(I edited this to remove my comments on being shaken by Tom Marsilje's death because I really can't find the right words...)
40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

Posts: 624
Joined: Sun Sep 13, 2015 6:16 pm

Re: More questions on maintenance.

Postby mariane » Sat Nov 18, 2017 12:03 am

It seems you got complete radiological response. Congratulations!

I would do PET but without stopping chemo. I think I would choose XEloda option.

It would be even better to resect one of the nodes and evaluate the pathology if accesible .From your signature I assume you had your primary removed before chemo. No info about path response.

How your labs look like?

My oncologist seems to keep NEDers on Xeloda as maintenance if there is residual, impossible to assess cancer. She seems to stop chemo only after all cancer removed. I was in the situation with 96% of path response after 4 treatments. I reached 100% after 6 months. My oncologist put me back on chemo 10 days after surgery since I recovered fast... She did not allow the chemo break even when she said to me that my cancer was dead and my CEA went down to<2 from 140. She stopped my chemo only after complete resection and 6 months of post op chemo

Good luck!
mom of now 9 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!

Posts: 1379
Joined: Mon Jun 13, 2011 1:13 am

Re: More questions on maintenance.

Postby rp1954 » Sun Nov 19, 2017 1:10 am

We got a surgeon to remove conglomerated para-aortic lymph nodes (PALN), some cancerous nodes enlarged to +-2 cm, mets identified as small as 2 mm (smaller micromets ignored ???). The conventional wisdom is that multiple lymph nodes means "chemo forever" and so far, that's the way it is for us. For us, the unconventional approach is more actively experimental to sensitize the cancer cells to chemo and to improve immunological processes; based on literature, blood work, and daily treatment as continuously as possible.

For the last 4-5 years, we've had little luck identifying new or growing residual mets with CT, MRI or PET. However when a cancer marker doubles a few times or goes to several times the cutoff value over months (e.g. AFP or CA199 while CEA is static or moves less), "waiting and watching" with scans off (immuno)chemo seems like an especially poor strategy for lymph nodes.

We arranged immunochemo as continuously as practical, scaling back on several days during the last week before surgery on the PALN. We pretty much restarted everything within 24 hrs, once the surgery was done successfully and known to be uncomplicated. Every time some aspect of the daily immunochemo program dips too low, various markers react adversely, even if some CBC values improve without the chemo bombardment. Chemo and adjunct interruptions occur but they are not desirable. For me, "vacation" means a deep breath, a cold sweat, and pulling another rabbit out of the hat.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

Posts: 54
Joined: Wed Jan 06, 2016 2:28 am
Location: USA

Re: More questions on maintenance.

Postby risto » Tue Nov 21, 2017 11:24 am

From what I've read, maintenance chemo is better than no chemo. For example:
"...if you are looking for delayed progression and you want to give some sort of maintenance therapy, the strongest data support a fluoropyrimidine/bevacizumab regimen..." ... preciated/
Last edited by risto on Wed Nov 22, 2017 11:44 pm, edited 1 time in total.
DW Dx 7/15, 41 yo, st IV, 3+ liver mets: 11.3 cm, 7cm, 3cm. MSS.
KRAS, APC, SMAD4, TP53 mut.
7/15-10/15: FOLFOX+bev. x8
11/15-12/15: SIRT (Y90)
1/16: Toxic Hepatitis, chemo break
4/16: Liver resec. fail
5/16-7/16: FOLFIRI x6
8/16: Liver resec.
8/16-11/16: FOLFIRI x6
2/17: IMRT/Xeloda x25
4/17: LAR
6/17: CT: Progression. Peri, Lung, Liver mets. FOLFIRI x6
9/17: FOLFIRI+Bev x5.
11/17: CT: Stable. 5FU+bev. maintenance x5
1/18-2/18: Surgery for SBO
5/18: ascites, acute liver injury

Posts: 137
Joined: Tue Aug 16, 2016 9:02 pm

Re: More questions on maintenance.

Postby WarriorSpouse » Tue Nov 21, 2017 11:32 pm

Hey AT,

Congratulations on making it through the year with the pump and your new normal. I look forward to your posts, since you and my wife's disease is similar in nature. You do have 10 years of youth on her though, and for what I have heard from many, that is good for you! We were at your same crossroads not very long ago. I remember discussing the decision making process with you here, that we had made after reviewing two separate oncologist's recommendations.

MA General Doctor said it was ok to stop and to monitor. She did a PET scan after a short break and she was still NED.
The Dana Farber Doctor said, why let it get back going when treatments have worked so well and NED is the new normal when being treated.

My wife went wit the three week plan of two weeks on a reduced Zeloda and the cycle beginning with an infusion of Avastin. The third week is an off week where your blood counts can recover.

So far this new plan is working great! Still NED after a recent CT scan, and the only visible difficulty is a good nap every afternoon for a couple of hours before dinner. Hand and Foot syndrome is very controllable with a lower dose of Zeloda. In fact, I do not see it anymore on her.

She'll be NED in a few months for about 3 years now. Life has been very good for us considering the circumstances. She is still working PT and has enough energy to be a Mom, wife, daughter, aunt, and sister. Currently I see no downfall to the maintenance therapy. I know Avastin has its risks, but we both are ok with it until our kids get older and further on in College. We have a HS Senior graduating in May. That will be a good benchmark for another review again.

Wishing you and your family all the best in the coming holiday season.
My thoughts are with you during this journey... Keep up the great work!

Best Regards,
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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