Oh, Crystal, dear friend. I have been clicking on your username, checking for your most recent posts, and worried since you were so upset in your last post. I was praying we would hear from you, but with good news, not this. I'm so sorry about all of this--how sick you've been, the news from the doctor, and how frightened you are. Firstly, I will be praying for a miracle. Secondly, I'll be praying that your status improves enough off the chemo to be accepted into the trial. And lastly, I will be praying that if the first two prayers aren't answered, you find peace and relief from pain and answers to your questions that ease your fears.
Were you able to get a second opinion from another oncologist? I know you were thinking about doing that after your last appointment.
I hate this disease so much. It's random and cruel and heartless. And it makes all of us who care about you feel helpless and impotent.
You know I have always enjoyed your posts and your messages to me. You've been a voice of kindness and calmness and an important part of what makes this board special for me and for others. We are all here for you if you want to rant, vent, ask questions, ask for prayers and good thoughts, whatever. And we always will be.
Sending hugs to you, friend. Please, please let me know if there is anything else I can possibly do to help.
Judy
Beginning the end of my journey
Re: Beginning the end of my journey
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4
Re: Beginning the end of my journey
You have been in my thoughts so much lately and will continue to be. I am so sorry for this bad news. I pray for peace for you in this journey.
Wife to DH/ Father of 6 (age 42 at dx) diagnosed Jan 2015 stage IIIC
Tumor deposit in mesentery 13/24 lymph nodes +
CEA at dx: 5
MSS
Low Grade/Mod. Diff.
FOLFOX 6 months
N.E.D until June 2018
PET Scan 6/18
Biopsy confirms cancer in 3 Paraaortic lymph nodes
Folfiri + Avastin (6tx) and Xeloda during radiation
Cancer all over both lungs dx Jan 2019
FOLFIRI +AVASTIN presently
Tumor deposit in mesentery 13/24 lymph nodes +
CEA at dx: 5
MSS
Low Grade/Mod. Diff.
FOLFOX 6 months
N.E.D until June 2018
PET Scan 6/18
Biopsy confirms cancer in 3 Paraaortic lymph nodes
Folfiri + Avastin (6tx) and Xeloda during radiation
Cancer all over both lungs dx Jan 2019
FOLFIRI +AVASTIN presently
-
Cowgirl918
- Posts: 326
- Joined: Sun Jan 17, 2016 12:55 am
- Location: Indiana
Re: Beginning the end of my journey
At some point each of us will walk this path. I am so sorry for you that this has come so early. It must be a frightening and unimaginable process. I have walked with many friends, family members and patients over the years. Everyone must find their own way but I want to tell you that you are stronger than you know. Allow yourself to scream with anger and cry with grief. Share with us and we will continue to share with you. I am praying for you now. Peace be upon you.
Grow and Soar to Freedom
“When we walk to the edge of all the light we have
And take the step into the darkness of the unknown,
We must believe one of two things will happen…
There will be something solid for us to stand on,
Or we will be taught to fly”
Unknown
Grow and Soar to Freedom
“When we walk to the edge of all the light we have
And take the step into the darkness of the unknown,
We must believe one of two things will happen…
There will be something solid for us to stand on,
Or we will be taught to fly”
Unknown
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80%
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
7/26/2023 Neuroendocrine mass small bowel, two mesenteric lymph nodes
9/1/2023 Small bowel resection jejunum and lymph nodes removed mesentery
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80%
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
7/26/2023 Neuroendocrine mass small bowel, two mesenteric lymph nodes
9/1/2023 Small bowel resection jejunum and lymph nodes removed mesentery
-
Maggie Nell
- Posts: 1151
- Joined: Wed May 27, 2015 1:57 am
- Location: Central Highlands, Victoria, Oz
Re: Beginning the end of my journey
On the day when the weight deadens on your shoulders and you stumble,
may the clay dance to balance you.
And when your eyes freeze behind the grey window and the ghost of loss
gets in to you, may a flock of colours, indigo, red, green and azure blue
come to awaken in you a meadow of delight.
When the canvas frays in the curach of though and a stain of ocean blackens
beneath you, may there come across the waters a path of yellow moonlight
to bring you safely home.
May the nourishment of the earth be yours,
may the clarity of light be yours,
may the fluency of the ocean be yours,
may the protection of the ancestors be yours.
And so may a slow
wind work these words
of love around you,
an invisible cloak
to mind your life.
from Anam Cara, by John O'Donohue
may the clay dance to balance you.
And when your eyes freeze behind the grey window and the ghost of loss
gets in to you, may a flock of colours, indigo, red, green and azure blue
come to awaken in you a meadow of delight.
When the canvas frays in the curach of though and a stain of ocean blackens
beneath you, may there come across the waters a path of yellow moonlight
to bring you safely home.
May the nourishment of the earth be yours,
may the clarity of light be yours,
may the fluency of the ocean be yours,
may the protection of the ancestors be yours.
And so may a slow
wind work these words
of love around you,
an invisible cloak
to mind your life.
from Anam Cara, by John O'Donohue
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.
-
Bev G
- Posts: 5856
- Joined: Thu Jan 07, 2010 11:19 pm
- Facebook Username: Bev Golde
- Location: Quechee, VT
Re: Beginning the end of my journey
No words. I'm so sorry. Your friends here are with you in spirit. Please visit whenever it may help.
Caring wishes to you.
Bev
Caring wishes to you.
Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo
9/13 ^17th clean PET/CT NED for now
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo
9/13 ^17th clean PET/CT NED for now
Re: Beginning the end of my journey
Crystald wrote:May each individual find peace and solace in their own source.
Sending Love Peace and Harmony
on the Journey ahead Crystald.
Namasté
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far
Re: Beginning the end of my journey
So sorry to hear that. I hope you are able to find some peace.
DX 9/23/15 rc (age 50)
CT & EUS revealed T3N1 Stage 3b
Chemo/Radiation Oct/Nov 2015
LAR 1/15/16 w/temp ilieostomy
Xelox 3/17/16 - 2 rounds then paused for ilieostomy reversal 4/22/16
& to Clear up C. Diff infection
Restart Xelox 5/19/16 - Final infusion 7/21/16
Finish Xelox (oral Xeloda) 8/3/16
8/17/16 CMP & CBC normal; CEA Zero!
9/26/16 Colonoscopy clear
10/5/16 CT clear
CT & EUS revealed T3N1 Stage 3b
Chemo/Radiation Oct/Nov 2015
LAR 1/15/16 w/temp ilieostomy
Xelox 3/17/16 - 2 rounds then paused for ilieostomy reversal 4/22/16
& to Clear up C. Diff infection
Restart Xelox 5/19/16 - Final infusion 7/21/16
Finish Xelox (oral Xeloda) 8/3/16
8/17/16 CMP & CBC normal; CEA Zero!
9/26/16 Colonoscopy clear
10/5/16 CT clear
-
British HNPCC
- Posts: 60
- Joined: Sat Nov 05, 2011 7:45 am
Re: Beginning the end of my journey
God bless you
Diagnosed with HNPCC/Lynch Syndrome in 2006
Polyp found Oct 11 advised that T3N2M0
Surgery Nov11 to remove colon/rectum and form temp ileostomy/J pouch.
Dec 11 Biopsy results = T1N0M0.
Feb 12 - Illeostomy takedown performed.
Polyp found Oct 11 advised that T3N2M0
Surgery Nov11 to remove colon/rectum and form temp ileostomy/J pouch.
Dec 11 Biopsy results = T1N0M0.
Feb 12 - Illeostomy takedown performed.
-
jortego128
- Posts: 288
- Joined: Sat Aug 15, 2015 7:47 am
Re: Beginning the end of my journey
Im very sorry to hear this. Hospice only means the end of treatments, not that the end of your life is at hand. Different people respond differently.
On losing the war, I lost the queen of my heart about two months ago. We did everything we could, fought with all we had, prayed from the very depths of our souls, yet God was ready to take her home. I am certain a miracle was given to us, because she was literally pain free up until the time of her death, and as I prayed for her comfort and for the Lord to have mercy on her soul, invoking special promises from Jesus, she passed that very hour as I whispered in her ear to let go, that I loved her and that I would take care of the family. The feeling that came over me as I prayed by her bedside is hard to describe, but a warmth and calmness came over me that I can only describe as the arms of God holding us together as I held her hand. I truly believe she is in a FAR better place than we are at this very moment.
Everyones situation is different, and I understand that not everyones passing will be as peaceful as my moms, but faith and prayer are powerful things. I will keep you in my prayers Crystal.
On losing the war, I lost the queen of my heart about two months ago. We did everything we could, fought with all we had, prayed from the very depths of our souls, yet God was ready to take her home. I am certain a miracle was given to us, because she was literally pain free up until the time of her death, and as I prayed for her comfort and for the Lord to have mercy on her soul, invoking special promises from Jesus, she passed that very hour as I whispered in her ear to let go, that I loved her and that I would take care of the family. The feeling that came over me as I prayed by her bedside is hard to describe, but a warmth and calmness came over me that I can only describe as the arms of God holding us together as I held her hand. I truly believe she is in a FAR better place than we are at this very moment.
Everyones situation is different, and I understand that not everyones passing will be as peaceful as my moms, but faith and prayer are powerful things. I will keep you in my prayers Crystal.
DM 57 yrs old dx 6/8/15 T:4a N:1b M:1
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016
Re: Beginning the end of my journey
Very sorry to hear this, Crystald. I will be praying for your comfort, peace, strength and absence of pain.
So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. ~ 2 Corinthians 4-16-18
Fight the good fight!
So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. ~ 2 Corinthians 4-16-18
Fight the good fight!
Wendy
Dx: RC 12/15/15, Age 57
Stage IIIB T3N1M0, 2 lymph nodes
G2: moderately differentiated
6 cm mass, 50% circumferential
7-13 cm from anal verge
Adenocarcinoma, MSS
CEA 5
Xeloda/IMRT 1/25/16 -2/26/26
uLar 5/11/16
pT3N0M0
0/13 lymph nodes
8 rounds Oxi/Fu5 6/16/16-9/21/16
CEA 1.2 10/15/16
Reversal 11/10/16
Dx: RC 12/15/15, Age 57
Stage IIIB T3N1M0, 2 lymph nodes
G2: moderately differentiated
6 cm mass, 50% circumferential
7-13 cm from anal verge
Adenocarcinoma, MSS
CEA 5
Xeloda/IMRT 1/25/16 -2/26/26
uLar 5/11/16
pT3N0M0
0/13 lymph nodes
8 rounds Oxi/Fu5 6/16/16-9/21/16
CEA 1.2 10/15/16
Reversal 11/10/16
-
KElizabeth
- Posts: 400
- Joined: Sat Oct 31, 2015 12:41 pm
- Facebook Username: KElizabeth
- Location: Omaha
Re: Beginning the end of my journey
I'll have you in my thoughts Crystald. Hugs.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current
Re: Beginning the end of my journey
Dear C, sorry for your fear and suffering. Thank you for sharing your thoughts with us, you are right, not many do at this point. (As my own condition deteriorates I see that point getting closer and closer, with little to guide us.) I wish you peace and no pain, supportive loved ones and time with them. Know that we care & love you here.
63 yrs,wife & mom
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."
Re: Beginning the end of my journey
Cristald you are in my thoughts constantly since I read your post. I haven't had the chance to write but you are right there is not much sharing on hospice here. We have been in hospice with my mom for over a month now and they have been good at making my mom comfortable. Sadly my mom's cancer has spread aggressively to her brain, so our hospice team has been challenging in ways that they weren't expecting.
I would like to follow your journey and be here as a help in anyway. My heart and my sincere prayer is with you and your loved ones. Sending a big hug full of love.
I would like to follow your journey and be here as a help in anyway. My heart and my sincere prayer is with you and your loved ones. Sending a big hug full of love.
Mom 62 dx IV - 10/13 multiple liver mets
Folfox + Avastin 12 cycles 06/14- tumors dead/ shrinkage!
5fu+ Avastin 2 rounds 08/14 - 09/14 - one single tumor growth
Folfiri 09/14
10/14 HAI pump- Tumors Shrinking
03/15 brain surgery 1 met SRS
11/15 brain scan clear after 2nd SRS. Liver mets shirnking
02/16 5 new brain mets. Liver growth
Folfox + Avastin 12 cycles 06/14- tumors dead/ shrinkage!
5fu+ Avastin 2 rounds 08/14 - 09/14 - one single tumor growth
Folfiri 09/14
10/14 HAI pump- Tumors Shrinking
03/15 brain surgery 1 met SRS
11/15 brain scan clear after 2nd SRS. Liver mets shirnking
02/16 5 new brain mets. Liver growth
Re: Beginning the end of my journey
So sorry. My prayers are with you. May you have peace now and forever...
Stage 4 colon cancer w. mets to liver
No surgeries, primary tumour & mets still in situ
MSS, KRAS wild type (normal)
2014 Folfox w. Avastin
2015 Folfiri w. Zaltrap
2016 Erbitux fail
June 2016 SIRT done; approved for TAS 102/ Lonsurf
Looking to participate in MSS immuno trial when they start recruiting, if Lonsurf fails
Married since 2007 with a 8 year old daughter.
No surgeries, primary tumour & mets still in situ
MSS, KRAS wild type (normal)
2014 Folfox w. Avastin
2015 Folfiri w. Zaltrap
2016 Erbitux fail
June 2016 SIRT done; approved for TAS 102/ Lonsurf
Looking to participate in MSS immuno trial when they start recruiting, if Lonsurf fails
Married since 2007 with a 8 year old daughter.
Re: Beginning the end of my journey
Thinking of you this morning & sending gentle hugs.
63 yrs,wife & mom
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."
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