The end of the road

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brokenwings
Posts: 147
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: 177
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-

Claudine
Posts: 808
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

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Lonsurf/Avastin 12/23

User avatar
GrouseMan
Posts: 888
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: 68
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.
husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
Liver, colon and node resection 4/21
New lung mets, Vectibix monotherapy started 6/21
Stop Vectibix lungs stable about 6 months; all other areas stable
Start Folfiri + avastin 1/22
Stop Folfiri (lungs stable 6 mos); start Vectibix 7/22
Stop Vectibix 12/22 (lungs stable 5 mos this time)
SBRT on lung Mets scheduled for 1/22, will restart Folfiri

brokenwings
Posts: 147
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: 147
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: 147
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: 147
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: 147
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: 88
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 Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant

Punky44
Posts: 497
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; 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: 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: 147
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.

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: The end of the road

Postby boxhill » Fri May 28, 2021 1:01 pm

I've thought about what I would do if the only treatment available to me was Lonsurf. I've thought that I would choose the same path as you. But no one knows what they will chose until they are there, and no one knows but you.

A friend of mine told be about her conversation with her husband of many decades, who suffered from diabetes, and had many operations and treatments, including amputation, and organ damage. He was hospitalized, facing one last possible procedure, which was at best a Hail Mary pass that would give him a little more time. He told her that he was just tired, too tired. She quoted to him the last two lines of the deeply moving poem, Invictus:

"I am the master of my fate,
I am the captain of my soul."

I wish all the best for you.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED


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