The end of the road

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boxhill
Posts: 730
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
5/19 MRI stable/NED
Stop Key
All MRIs NED

User avatar
CRguy
Posts: 10317
Joined: Sun Feb 10, 2008 6:00 pm

Re: The end of the road

Postby CRguy » Fri May 28, 2021 1:09 pm

brokenwings wrote:You were there from the beginning and it's only fair that you're there at the end.


Beginnings and endings are only checkpoints along the way.
You are on a Journey and we are here with you.
Whatever you choose must be right for you and we will support you.

Sending Love Peace and Harmony to you my friend
on your Journey

CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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

Re: The end of the road

Postby brokenwings » Sat May 29, 2021 12:33 am

boxhill wrote: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.


Thank you for your moving message.... I read a lot about Lonsurf and I really don't think my cancer's profile coincides with that of those rare patients who had success with this drugs.
So I just told my oncologist I wanted to stop all. She understood.
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 » Sat May 29, 2021 12:36 am

CRguy wrote:
brokenwings wrote:You were there from the beginning and it's only fair that you're there at the end.


Beginnings and endings are only checkpoints along the way.
You are on a Journey and we are here with you.
Whatever you choose must be right for you and we will support you.

Sending Love Peace and Harmony to you my friend
on your Journey

CRguy

Thank you for your support. I've decided to stop everything. I'm praying to still have some good weeks and be able to enjoy my last summer on this beautiful Earth.
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.

DarknessEmbraced
Posts: 3607
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: The end of the road

Postby DarknessEmbraced » Sat May 29, 2021 9:15 am

I'm so very sorry.*hugs* Sending you peace and love.
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! :)

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

Re: The end of the road

Postby brokenwings » Sat May 29, 2021 1:02 pm

DarknessEmbraced wrote:I'm so very sorry.*hugs* Sending you peace and love.


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.

User avatar
beach sunrise
Posts: 499
Joined: Thu Mar 05, 2020 7:14 pm

Re: The end of the road

Postby beach sunrise » Mon May 31, 2021 5:00 pm

Hi Paola, I am so heartbroken to read this. I hope and pray you have the best summer ever with many joys, smiles and really high spirit lifting good times.
Please keep posting if you can/want to. You are in my thoughts and prayers.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

DeeMeee
Posts: 19
Joined: Sun Apr 04, 2021 8:03 pm

Re: The end of the road

Postby DeeMeee » Tue Jun 01, 2021 8:18 am

Hi Paola,
I wish you all the little things, that bring you smiles.
And with all the strength you have kept up, through each step of your dance with this beast, let that same energy now fill your moments with both tranquil and exciting experiences.
Peace and Prayers to you, and those who love you.
sister to 57yo m
3/21 CT blockage susp of ileal adenocarcinona mass w nodal mets & perit carcinomatosis
3/21 lap R hemi innumeral mets peritoneal nod 9.5 cm ileocecal mass. Remvd mass, apnx,12i sm int 6i l int nodules CEA 7.8
3/21 Path:Stage 3c pt4b pn2b signet ring cell carcinoma prly diff close mrg 18/28 n
4/21 CEA 3.9 FOne MSI H TMB 13mb KRAS G13D NRAS wt
4/21 Endsc Rules out UGI prmy: bpy:mild peptic duodenitis
4/29 surgeon consult; reassess 6mth for surgery candidate
5/3 Start of Pembrolizumab

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

Re: The end of the road

Postby brokenwings » Tue Jun 01, 2021 1:16 pm

beach sunrise wrote:Hi Paola, I am so heartbroken to read this. I hope and pray you have the best summer ever with many joys, smiles and really high spirit lifting good times.
Please keep posting if you can/want to. You are in my thoughts and prayers.

Thank you. I'm on a trip now. So far so good...
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 » Tue Jun 01, 2021 1:17 pm

DeeMeee wrote:Hi Paola,
I wish you all the little things, that bring you smiles.
And with all the strength you have kept up, through each step of your dance with this beast, let that same energy now fill your moments with both tranquil and exciting experiences.
Peace and Prayers to you, and those who love you.


Thank you very much.
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
ginabeewell
Posts: 506
Joined: Wed Oct 24, 2018 10:30 am

Re: The end of the road

Postby ginabeewell » Tue Jun 01, 2021 9:43 pm

We’ve been on this road together, and reading what you’ve all been through makes me sad for what sounds like a very tough journey. I’m so glad to hear you are planning to enjoy your summer - you certainly deserve that and more.

A book you may find helpful: Journey of Souls, reco’d to me by my therapist when I couldn’t stop thinking about dying. It brought me to a better place, even though I’m still not sure I believe all of it! I liked the idea that I picked this life to learn something; and somehow that made everything feel less out of my control.

Will be thinking of you and sending all my positive energy, so that your immune system keeps you going and enjoying your days as best you can.

With love, Gina
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

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

Re: The end of the road

Postby brokenwings » Fri Jun 04, 2021 1:21 pm

ginabeewell wrote:We’ve been on this road together, and reading what you’ve all been through makes me sad for what sounds like a very tough journey. I’m so glad to hear you are planning to enjoy your summer - you certainly deserve that and more.

A book you may find helpful: Journey of Souls, reco’d to me by my therapist when I couldn’t stop thinking about dying. It brought me to a better place, even though I’m still not sure I believe all of it! I liked the idea that I picked this life to learn something; and somehow that made everything feel less out of my control.

Will be thinking of you and sending all my positive energy, so that your immune system keeps you going and enjoying your days as best you can.

With love, Gina


Dear Gina,

You were one of the first to welcome me to this forum and I will never forget it. It means a lot to me as well that you write back now. Thank you for your loving message.
I'll check the book.

Hugs.

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: 1503
Joined: Sat Aug 17, 2013 5:46 pm

Re: The end of the road

Postby stu » Sun Jun 06, 2021 3:11 am

Hope you had a good trip !
Thinking of you and sending much love. Hope you get many good times over the summer with your family !
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 .

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

Re: The end of the road

Postby brokenwings » Sun Jun 06, 2021 9:19 am

stu wrote:Hope you had a good trip !
Thinking of you and sending much love. Hope you get many good times over the summer with your family !
Stu


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.

User avatar
Green Tea
Posts: 421
Joined: Mon Oct 24, 2016 10:48 am

Re: The end of the road

Postby Green Tea » Mon Jun 07, 2021 12:19 am

Paola -

I'm so sorry to hear that your peri-met treatments are no longer working. I was hopeful that all your trips to Lyon for treatment would be worth the effort. And it was so disappointing that your difficult cytoreductive surgery / HIPEC procedure did not completely wipe out the peri-mets.

I hope that you are able to have some time now to enjoy whatever time you have left. If you are able to continue to travel now and over the summer, maybe you could plan a trip over to the Alps or somewhere else peaceful, just to get away from the bad weather and chaos there in the Île-de-France and enjoy some quiet serenity.

Whenever I now see a reference in the news to the Gare de Lyon or the A6 motorway, I will think of you and wonder how you are doing. In the past couple of months I noticed that you had been logging in here every other day or so but never posting any messages until finally you started this current thread. It must have been very difficult and heart-wrenching for you to finally decide to post that message.

I'll be thinking of you over the summer and beyond, and will say a prayer for safe journeys wherever you decide to go next.

Take care, and God bless you.


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