Sort of good news

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brokenwings
Posts: 147
Joined: Mon Jan 07, 2019 1:50 am

Sort of good news

Postby brokenwings » Fri Jul 05, 2019 2:40 am

Hi, there.

I've got sort of good news, for a change.

My IP + IV experimental protocol seems to be working. This is at least what my surgeon came to tell me this morning. He wants me though to have 4 more cycles before re-tempting CRS/HIPEC.

So I'll spend my summer doing hard core chemo... Not a terrific plan but better than "chemo not working".

It's been a rough week, with a painful peritoneography and a laparoscopic exploration. I'll try to get out a little bit this weekend, as the chemo sessions start back next Tuesday.

Wish me luck.

Paola
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Sort of good news

Postby stu » Fri Jul 05, 2019 3:00 am

Great to hear . A good direction to be heading in . Hope you have a good weekend . I will be thinking of you as you endure chemo .
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
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Sort of good news

Postby LPL » Fri Jul 05, 2019 5:57 am

Good news :)
Happy to hear this Paola !
Yes, Best of Luck with these next chemos.
I hope you can have a nice weekend, we sure have had it a little too warm now in France - right?
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

AmyG
Posts: 371
Joined: Tue Dec 25, 2018 8:08 pm

Re: Sort of good news

Postby AmyG » Fri Jul 05, 2019 8:55 am

That's great news!! I'm so glad you've heard something positive!!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: Sort of good news

Postby Punky44 » Fri Jul 05, 2019 9:10 am

Great news! Good luck this summer!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

brokenwings
Posts: 147
Joined: Mon Jan 07, 2019 1:50 am

Re: Sort of good news

Postby brokenwings » Fri Jul 05, 2019 9:53 am

stu wrote:Great to hear . A good direction to be heading in . Hope you have a good weekend . I will be thinking of you as you endure chemo .
Take care ,
Stu


Thank you. I'm not quite there yet but at least I've got, as you say, a direction. It's better than nothing!
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

brokenwings
Posts: 147
Joined: Mon Jan 07, 2019 1:50 am

Re: Sort of good news

Postby brokenwings » Fri Jul 05, 2019 9:54 am

LPL wrote:Good news :)
Happy to hear this Paola !
Yes, Best of Luck with these next chemos.
I hope you can have a nice weekend, we sure have had it a little too warm now in France - right?


Too warm, definetely. I'm spending this weekend near the Alps, in Grenoble. I'll try to send some photos :lol:
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

brokenwings
Posts: 147
Joined: Mon Jan 07, 2019 1:50 am

Re: Sort of good news

Postby brokenwings » Fri Jul 05, 2019 9:55 am

AmyG wrote:That's great news!! I'm so glad you've heard something positive!!

It was about time!! :mrgreen:
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Sort of good news

Postby fumaros » Fri Jul 05, 2019 9:55 am

Good luck Paola. It is certainly the right direction, and getting to surgery hopefully is great news.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

brokenwings
Posts: 147
Joined: Mon Jan 07, 2019 1:50 am

Re: Sort of good news

Postby brokenwings » Fri Jul 05, 2019 10:05 am

Punky44 wrote:Great news! Good luck this summer!


Thanks a lot!

These last two months all I did was to obssess about my disease and not think about anything else. Let tell you, time didn't fly by.

I hope these next two months I'll be able to at least get away my off chemo weekends, so time will seem to go by faster.
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

brokenwings
Posts: 147
Joined: Mon Jan 07, 2019 1:50 am

Re: Sort of good news

Postby brokenwings » Fri Jul 05, 2019 10:07 am

fumaros wrote:Good luck Paola. It is certainly the right direction, and getting to surgery hopefully is great news.


Thank you. I'm trying to be cautious and not get my hopes up but I am a little bit relieved...

Are you getting surgery for your peri mets?
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Sort of good news

Postby fumaros » Fri Jul 05, 2019 10:12 am

brokenwings wrote:
Are you getting surgery for your peri mets?


I will be. My onc first told me it was to be chemo for life. Then he decided to explore all options.

Currently, based on stable scan results and my CEA dropping, the plan is 2 - 4 more cycles of FOLFIRI, then a month off, and then HIPEC. Wish me luck.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

brokenwings
Posts: 147
Joined: Mon Jan 07, 2019 1:50 am

Re: Sort of good news

Postby brokenwings » Fri Jul 05, 2019 11:17 am

fumaros wrote:
brokenwings wrote:
Are you getting surgery for your peri mets?


I will be. My onc first told me it was to be chemo for life. Then he decided to explore all options.

Currently, based on stable scan results and my CEA dropping, the plan is 2 - 4 more cycles of FOLFIRI, then a month off, and then HIPEC. Wish me luck.


Good luck! Is CEA a good indicator for your peri mets? I'm asking since your primary has been removed and you don't have mets elsewhere...

I don't know what to make out of my CEA.... When I was first diagnosed it was 8, now it's 1.1. My primary is still there and apparently it hasn't shrunk. Why did my CEA drop? I thought peri mets didn't release CEA...
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Sort of good news

Postby LPL » Sat Jul 06, 2019 4:53 am

brokenwings wrote:
LPL wrote:Good news :)
Happy to hear this Paola !
Yes, Best of Luck with these next chemos.
I hope you can have a nice weekend, we sure have had it a little too warm now in France - right?


Too warm, definetely. I'm spending this weekend near the Alps, in Grenoble. I'll try to send some photos :lol:

That sounds smart!! Yes please show photos :)
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

Jannine
Posts: 204
Joined: Wed Jun 20, 2018 7:46 am
Location: Maryland, USA

Re: Sort of good news

Postby Jannine » Sat Jul 06, 2019 9:28 am

brokenwings wrote:Too warm, definetely. I'm spending this weekend near the Alps, in Grenoble. I'll try to send some photos :lol:


!!! I spent a year in Grenoble as a student! Definitely looking forward to your pics. I bet it looks very different than it did in 1992! ;)
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear


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