One month NED. Now back to the fight again.

Please feel free to read, share your thoughts, your stories and connect with others!
LMighty
Posts: 98
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

One month NED. Now back to the fight again.

Postby LMighty » Tue Feb 28, 2017 3:42 am

Hi everyone,

My 64 year old mother went through 6 rounds of xelox plus avastin to treat her invisible lung mets (no visible tumor, only found adenocarcinoma cells in pleural fluid). After one month of being happily NED (with 2 rounds of xeloda plus avastin as maintenance) the pleural fluid accumulates again.

600 cc of yellow cloudy fluid was drained. Test shows presence of adenocarcinoma cells. We are going to meet the onc tomorrow and we expect another round of painful chemo would be underway.

It's like fighting an invisible enemy in the dark. There is no visible tumor or nodule shown on even the PET scan we did a month ago, but the fluid just comes back. Very frustrating :(

Right now we really have no idea what to expect. Does this mean the chemo is not working? Will the fluid ever go away despite the absence of visible tumor?

:cry:
Supporter to my mom (64 yr); KRAS wild type; MSS

2012: DX Stage I, rectal cancer; resection and colostomy
5/16: DX Stage III, mets found; right groin lymph node and soft tissue
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid
7-12/16: Xelox + Avastin X 6
1/17: Clean PET scan, NED
2/17: Pleural effusion; recurrence
4/17: Iri + Erb X 3
5/17: Ascites; Chemo failed
6/17: Keytruda X 1
7/17: TECENTRIQ (atezolizumab) + COTELLIC (cobimetinib)
9/17: At peace

stu
Posts: 1614
Joined: Sat Aug 17, 2013 5:46 pm

Re: One month NED. Now back to the fight again.

Postby stu » Tue Feb 28, 2017 3:09 pm

Hi,
I can not answer some of your questions and it must be difficult to tackle something that you can't see. But I thought I would bump this back up so others might be able to help you.
I would say though my mum had a few bumps along the way but seemed to keep going.
Take care
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: One month NED. Now back to the fight again.

Postby DarknessEmbraced » Tue Feb 28, 2017 11:39 pm

I'm so sorry your mother is going through this and hope her chemo goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

LMighty
Posts: 98
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

Re: One month NED. Now back to the fight again.

Postby LMighty » Thu Mar 02, 2017 7:25 am

Hi guys,

Thanks for your kind words.

We met the onc yesterday to decide our next steps.

Unfortunately in terms of curability (if any), he said my mom's condition is less favorable than visible tumor because there is no localized resectable target. Still, we have the solution that is redoing pleurodesis, which will prevent pleural fluid from accumulating IF done perfectly. He also mentioned that a perfect pleurodesis would have sort of "preventive" benefit, as it eliminates space for malignant fluid accumulation which may lead to tumor development. It certainly does not mean that the disease won't progress in other ways, but we will take it if it at least means permanent or long-term elimination of pleural effusion.

The pleurodesis will be done in weeks once X-ray shows "sufficient" accumulation of fluid -- after the fluid is drained of course. We will then take a 2-month break starting today before she undergoes the coming rounds of Irinotecan + Avastin + Xeloda. Finger crossed the cancer does not progress during the break and the new drug works better than Oxaliplatin. I try to be optimistic. It is really tough enjoying only one month of NED and having to watch her going through the ordeal again :(
Supporter to my mom (64 yr); KRAS wild type; MSS

2012: DX Stage I, rectal cancer; resection and colostomy
5/16: DX Stage III, mets found; right groin lymph node and soft tissue
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid
7-12/16: Xelox + Avastin X 6
1/17: Clean PET scan, NED
2/17: Pleural effusion; recurrence
4/17: Iri + Erb X 3
5/17: Ascites; Chemo failed
6/17: Keytruda X 1
7/17: TECENTRIQ (atezolizumab) + COTELLIC (cobimetinib)
9/17: At peace

stu
Posts: 1614
Joined: Sat Aug 17, 2013 5:46 pm

Re: One month NED. Now back to the fight again.

Postby stu » Fri Mar 03, 2017 2:58 am

Hi ,
I will be thinking of your mum as she faces the next procedure.
I hope she enjoys her two months off. It will build her up nicely. My mum had quite long gaps without chemo. We are more inclined to do that over here. Quality of life balance but it works out ok.
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

User avatar
dianetavegia
Posts: 2731
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: One month NED. Now back to the fight again.

Postby dianetavegia » Fri Mar 03, 2017 3:36 pm

A quick thought, and I'm no expert on this, but my understanding is that Avastin cuts off the blood supply to tumors. I never understood oncs ordering Avastin if there is no known tumor.

The fluid is called ascites.

Best of luck to your mom.
Diane
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

Achilles Torn
Posts: 141
Joined: Fri Dec 16, 2016 2:41 pm

Re: One month NED. Now back to the fight again.

Postby Achilles Torn » Sat Mar 04, 2017 2:22 am

My understanding is that Avastin prevents tumors from growing new blood vessels. For even a tiny group of cancer cells to grow they need to form blood supply....even if these cells are not visible to scans.

Cheers
AT
Diagnosed as 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 + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

LMighty
Posts: 98
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

Re: One month NED. Now back to the fight again.

Postby LMighty » Thu Mar 09, 2017 6:35 am

Thanks for all your responses.

When we met the onc again two days ago he seemed to have changed his expectations -- after reconsideration he said we may not start another round of chemo so soon, meaning the 2-month break may become a longer one. My mom is now on observation. Chemo will be "reserved" for in case of further progression in view of her rather poor marrow reserve after Oxi. Scan to be performed in 2 months. Regardless, we will drain the fluid from the lung and redo a pleurodesis soon.

The coming 2 months is going to be pleasant and frightening at the same time. I really hope all the recurrent effusions are just some pseudoprogression :cry:
Supporter to my mom (64 yr); KRAS wild type; MSS

2012: DX Stage I, rectal cancer; resection and colostomy
5/16: DX Stage III, mets found; right groin lymph node and soft tissue
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid
7-12/16: Xelox + Avastin X 6
1/17: Clean PET scan, NED
2/17: Pleural effusion; recurrence
4/17: Iri + Erb X 3
5/17: Ascites; Chemo failed
6/17: Keytruda X 1
7/17: TECENTRIQ (atezolizumab) + COTELLIC (cobimetinib)
9/17: At peace


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 21 guests