The end of the road

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brokenwings
Posts: 144
Joined: Mon Jan 07, 2019 1:50 am

The end of the road

Postby brokenwings » Thu May 27, 2021 8:52 am

Dear peeps,

I know I haven't posted here in a while but I feel the need to do it now. You were there from the beginning and it's only fair that you're there at the end.
After 2 and a half years of trying everything possible to get rid of my aggressive cancer (2 clinical trials, 1 emergency colostomy, 5 laparoscopies, 2 laparotomies, FOLFOXIRI, FOLFOX, AVASTIN, FOLFIRI, a fistula, 2 abdominal infections, countless UTIs, chemo-induced anemia...), there seems to be few options left for me.
My cancer is now back at my peritoneum (causing distension on several parts of my bowels and putting me at high risk for an obstruction), in my liver (8 tumors) and in my lungs.
Folfox has stopped working... I can't do Folfiri because of my distended bowels (same for Avastin) and no Pani nor Cetuxi due to my Kras mutation...
No Stivarga again due to my bowels...
I'm just left with Lonsurf... or a less than promising clinical trial...
If I choose the trial (highly expetimental, Phase1 First in Humans) my summer will be scr**d since I would have to go to my cancer centre twice a week...

I'm leaning towards not doing anything else... Just trying to enjoy this last summer as best as I can... and then say my goodbyes.

Love to you all.

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.

catstaff
Posts: 86
Joined: Wed Mar 03, 2021 11:37 am

Re: The end of the road

Postby catstaff » Thu May 27, 2021 8:59 am

I'm at a loss for anything much to say other than I am so terribly sorry and I hope your remaining time, whatever it may be, is as good as possible.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

prayingforccr
Posts: 126
Joined: Sun Jun 28, 2020 4:44 pm

Re: The end of the road

Postby prayingforccr » Thu May 27, 2021 9:33 am

I’m crying, Paola.

May God keep you close.
Nov 2019: colonoscopy
Dec 2019: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2020: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2020: tumor/scar 3.7cm
July 2020: began 8 treatmentsFOLFOX
August 2020: ct scan reveals scarbed reduced to 2.7cm CEA is 1.5
Nov 2020: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy negative for cancer.
May 2021: Multiple lung nodules (3-6mm) on ct scan

Claudine
Posts: 532
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: The end of the road

Postby Claudine » Thu May 27, 2021 11:15 am

I am so very sorry to read this, Brokenwings. It is hard to find words... The end of the road will be there for all of us, eventually, but it seems so unfair that one should go through so much. I hope you can find peace and have the best possible summer, surrounded by friends and family. Much love XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: low 3.2, now 81.1
Scan 03/19: Multiple small lung nodules, now gone/calcified
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 06/17/2021: stable

User avatar
GrouseMan
Posts: 860
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: The end of the road

Postby GrouseMan » Thu May 27, 2021 12:10 pm

It seems as though you have exhausted anything that had shown signs of slowing this Sh** down. My wife did a trial but at the end of it there wasn't much else available. She retired from work at that point in January and spent the few final months enjoying the time she had left. Though here it was winter and she passed the beginning of June she spent the spring horse back riding and chasing dogs at the field trials she enjoyed so much. I wish she had more time to enjoy the summer and fall, but things deteriorated pretty quickly in May of 2017.

If it were me I would spend more time enjoying what time you have left. My wife had a pretty good quality of life during the whole period of her treatment, but she worked perhaps too long, and didn't spend enough time at the end doing the things she loved before it was too late. From your profile you did a lot of things that really subjected you to a poor quality of life for periods of time that didn't enable you to enjoy the time you had left. My wife was never a candidate for surgery being older (53 at the time) but in really good physical shape before all this started. She was a life time runner. Did so even after diagnosis until the Chemo just took too much of her energy away. She had almost 4 good solid years with a pretty good quality of life overall however. Its a hard choice to make. But be a little (or a lot) selfish, you are entitled to be.

Enjoy Life while you have it. Never know when it might be cut short!
Regards,
GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

Bpaint
Posts: 15
Joined: Sun Oct 11, 2020 8:54 pm

Re: The end of the road

Postby Bpaint » Thu May 27, 2021 3:01 pm

I'm really sorry to hear this and hope you can find some peace and joy in the time you have left.
My husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes (25+)
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
CEA 113
Liver, colon and lymph node resection scheduled for 4/9/21

brokenwings
Posts: 144
Joined: Mon Jan 07, 2019 1:50 am

Re: The end of the road

Postby brokenwings » Thu May 27, 2021 4:34 pm

catstaff wrote:I'm at a loss for anything much to say other than I am so terribly sorry and I hope your remaining time, whatever it may be, is as good as possible.

Thank you.
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: 144
Joined: Mon Jan 07, 2019 1:50 am

Re: The end of the road

Postby brokenwings » Thu May 27, 2021 4:48 pm

prayingforccr wrote:I’m crying, Paola.

May God keep you close.


I'm sorry I made you cry. It is a sad story...
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: 144
Joined: Mon Jan 07, 2019 1:50 am

Re: The end of the road

Postby brokenwings » Thu May 27, 2021 4:59 pm

Claudine wrote:I am so very sorry to read this, Brokenwings. It is hard to find words... The end of the road will be there for all of us, eventually, but it seems so unfair that one should go through so much. I hope you can find peace and have the best possible summer, surrounded by friends and family. Much love XXXXX


Thanks for your support.
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: 144
Joined: Mon Jan 07, 2019 1:50 am

Re: The end of the road

Postby brokenwings » Thu May 27, 2021 5:07 pm

GrouseMan wrote:It seems as though you have exhausted anything that had shown signs of slowing this Sh** down. My wife did a trial but at the end of it there wasn't much else available. She retired from work at that point in January and spent the few final months enjoying the time she had left. Though here it was winter and she passed the beginning of June she spent the spring horse back riding and chasing dogs at the field trials she enjoyed so much. I wish she had more time to enjoy the summer and fall, but things deteriorated pretty quickly in May of 2017.

If it were me I would spend more time enjoying what time you have left. My wife had a pretty good quality of life during the whole period of her treatment, but she worked perhaps too long, and didn't spend enough time at the end doing the things she loved before it was too late. From your profile you did a lot of things that really subjected you to a poor quality of life for periods of time that didn't enable you to enjoy the time you had left. My wife was never a candidate for surgery being older (53 at the time) but in really good physical shape before all this started. She was a life time runner. Did so even after diagnosis until the Chemo just took too much of her energy away. She had almost 4 good solid years with a pretty good quality of life overall however. Its a hard choice to make. But be a little (or a lot) selfish, you are entitled to be.

Enjoy Life while you have it. Never know when it might be cut short!
Regards,
GrouseMan


Thank you for your beautiful message and your support.
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: 144
Joined: Mon Jan 07, 2019 1:50 am

Re: The end of the road

Postby brokenwings » Thu May 27, 2021 5:08 pm

Bpaint wrote:I'm really sorry to hear this and hope you can find some peace and joy in the time you have left.


Thank you.
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.

Sunnycd
Posts: 51
Joined: Fri Feb 26, 2021 10:36 am

Re: The end of the road

Postby Sunnycd » Thu May 27, 2021 10:57 pm

I can’t find the right words to express how very sorry I am...You have been through so much. Whatever decision you make, I hope you enjoy your time, as short or as long as it may be.
DX 02/21 CC IIB @ 51
01/21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
3/21 started 4 rounds of CAPOX

Punky44
Posts: 480
Joined: Mon Oct 01, 2018 4:29 pm

Re: The end of the road

Postby Punky44 » Thu May 27, 2021 11:58 pm

I’m so sorry to read this and I can’t find the words but I will keep you in my prayers and thank you for sharing your journey with us. <3
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
Latest update: 3/22/21: CEA 3.4

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

brokenwings
Posts: 144
Joined: Mon Jan 07, 2019 1:50 am

Re: The end of the road

Postby brokenwings » Fri May 28, 2021 1:31 am

Sunnycd wrote:I can’t find the right words to express how very sorry I am...You have been through so much. Whatever decision you make, I hope you enjoy your time, as short or as long as it may be.


I've been through hell and back. Now it's time to rest. Thank you for your support.
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: 144
Joined: Mon Jan 07, 2019 1:50 am

Re: The end of the road

Postby brokenwings » Fri May 28, 2021 1:32 am

Punky44 wrote:I’m so sorry to read this and I can’t find the words but I will keep you in my prayers and thank you for sharing your journey with us. <3


Thanks for your message.
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.


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