Beginning the end of my journey

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Beginning the end of my journey

Postby Crystald » Wed Apr 27, 2016 8:07 pm

I have been lurking and reading these past few weeks, just been so sick. Did 3, 14 day cycles of Xeloda, 1500mg@2x a day. Halfway through the second cycle got horribly sick, vomiting 15X daily, diahrrhea, fatigue, hitting the throne room every 15 minutes, sucked.
Finally ONC said I had become lactose intolerant due to the Xeloda, never heard that before.

Went in for labs every week, this Tuesday he comes and tells me that I have weeks left. All chemo has been stopped and I have been discharged to hospice. He said my liver is too far gone to even consider any trials (I wanted the Xilonix trial). Wow. Well hell.

Hospice is coming over next week, I got a list of questions from this wonderful board to ask them.

I wish I had found this forum when I was first diagnosed, it would have saved me alot of grief and helped me to better understand how my life had changed.

I have seen alot of wonderful people taken by this horrible disease, and even if I did not know them, I grieved for those left behind.
I have met many wonderful folks here too and spent countless hours reading about others, their pain, grief, joy and success. Always something to learn here.

This forum provides a unique source of comfort for those who are fighting. It is a very valuable asset.

There is not much information here about losing the fight, it is not discussed much except by a few. Not sure why that is, since we share so much information about every other aspect of the fight.

Anyway I just wanted to thank everyone for sharing their experiences, failures, frustrations, and triumphs.

I am so frightened, but I think that is normal. I am not ready, I am angry, disappointed, just a cacophony of emotions.

I pray for everyone every night, with His help I may be around a while and update the experience I am having with the end of the journey.

May each individual find peace and solace in their own source.
Age 58
DX Jul 2014 Stage IVb CRC metastatic, unknown primary, CEA 1826
Inoperable, Chemo for life
MSI: not tested
29 Jul 14 Port
30 Jul - 19 Jan 2015 Folfox (12 cycles) CEA 164.5
9 Feb 15 - 20 May Flofiri failed (6 cycles) CEA 417.0
17 Jul 15 - Initiated Vectibix CEA 555.5
17 Jul 2015 - 14 Jan 2016 Vectibix
8 Feb 2016 - 11 Apr 2016 Xeloda
26 Apr 2016 Hospice

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Re: Beginning the end of my journey

Postby midlifemom » Wed Apr 27, 2016 8:43 pm

So sorry you are starting this new phase of your journey so unexpectedly.

Is your onc familiar enough with the Xilonix trial to determine your eligibility for it?
I also wonder if your liver may recover somewhat after a few weeks without chemo. At least recover enough for xilonix.

You are right, there's not as much sharing about the last leg of the journey. I suppose some folks reserve their energy for time with family. I would love to hear your experiences however, if you feel up to it. Also your interviewing of hospice would be interesting.

Regardless if we hear from you much or not, we're all wishing you happiness and peace.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

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Re: Beginning the end of my journey

Postby jhocno197 » Wed Apr 27, 2016 8:46 pm


:( I am sorry.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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Location: Montréal, QC

Re: Beginning the end of my journey

Postby JJ2212 » Wed Apr 27, 2016 9:43 pm

It's hard to find the right words to say, but know that my thoughts are with you. Sending positive vibes your way. Take care.

Rectal cancer dx 04/13 @ 42, MSS, KRAS positive
T3N2M1 (1 lung met)
5 weeks xeloda+radiation finished 07/13
APR 9/13 (permanent colostomy), 27/31 nodes positive :-(
12 rounds of FOLFOX 04/14
Lung met growth 11/14
26 cycles Regorafenib (Stivarga) from 11/15 to 01/17
New lung met and chest/neck lymph nodes 01/17
1 cycle Folfiri

Posts: 679
Joined: Sun Sep 13, 2015 6:16 pm

Re: Beginning the end of my journey

Postby mariane » Wed Apr 27, 2016 10:34 pm

I am very sorry... I will pray for you.
mom of now 11 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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Re: Beginning the end of my journey

Postby Travelgirl » Wed Apr 27, 2016 10:48 pm

God bless you.

I also attend a cancer support group at my church. This past Tuesday we talked about this ..There is a man who shows up and the Dr's said the Same thing to him. There was nothing else they could do.

Here is what we spoke about.

We spoke about Cardinal Bernadine who in 1996 passed Away from cancer. Before he passed he reminded every one that death should not be anything to be afraid of. He said that we should all embrace death as a friend. And what he was adamant about, was making sure he got his Christmas cards done. Sending everyone he cared about a final Christmas card blessing. He had a friend mail them out for him after he passed.

Please share with us if you can.

I am praying for you ..
Travel Girl
DX-CC 12/19/15
Tumor location Cecum
Tumor Type -Adenocarcinoma arising background sessile serrated polyp high grade dysplasia
Tumor size 1.5 cm
TNM - T1, N0, M0
Stage 1
Baseline 12/15 CEA 2.4, 8/16 CEA 1.7,11/15 CEA 2.3
Surgical Margins Clear
Lynch - Neg
Primary Surgery 1/11/16 LAR right colon and portion of ileum right hemicolectomy
1/4 follicular lymphoma- Wait n Watch (found in CT scan for Colon cancer) a 2 for 1 special.
8/16/16 NED for Colon/Lymphoma nodes have shrunk on their own.

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Re: Beginning the end of my journey

Postby Lund5505 » Wed Apr 27, 2016 11:00 pm

Words cannot convey how sorry I am to hear this. There is nothing that prepares us for hearing this news. I know I felt every emotion in the book and still have not come to grips with it. Feel free to vent and share as you feel able. I do think we need to as a group be more open to those of us who are in this same boat. Sometimes medical science is no longer able to help. I wish you all the best in this next phase and pray your suffering be minimal.
10/2013 dx female @54 stage IV innumerable liver mets
CEA 2600 kras wild MSS
11/2013 folfox avastin 8 rounds
6/2014 neuropathy development CEA 9.8 but won't go lower
8/2014 colon resection
11/2014 folfiri and cetuximab 9 rounds CEA 1700
4/2015 cetuximab only 4 rounds CEA down to 20 but won't go lower
7/2015 chemo break getting too toxic
10/2015 xeloda 3 rounds CEA 800 then 300 then back up to 900
1/2016 irinotecan CEA 1800 at start 2/2016 too toxic
4/2016 Cea 3200
Hospice recommended but I'm not ready yet

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Joined: Tue Aug 04, 2015 12:14 am

Re: Beginning the end of my journey

Postby Wendyann » Wed Apr 27, 2016 11:13 pm

I am sorry for your news. No one is ready to hear the words "there is nothing more that we can do". But don't give up hope. Only God knows the number of your days here in this world and I believe in an eternal soul so perhaps it is not the end of your journey. Sending prayers and peace your way.
50 yr old mother of 22 yr old daughter and 18 yr old son. Dx 07/14. Liver/lung mets. Stage 4. Sigmoid colon resection 09/14. Folfox and then Folfiri 11/14 to 02/15. Folfiri 07/15 to 11/15. Back to chemo 04/16. Chemo for life.

Nik Colon

Re: Beginning the end of my journey

Postby Nik Colon » Wed Apr 27, 2016 11:31 pm

I am so sorry :( prayers and hugs

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Re: Beginning the end of my journey

Postby Jacques » Thu Apr 28, 2016 3:20 am

Crystald wrote:... Hospice is coming over next week, I got a list of questions from this wonderful board to ask them...

I'm so sorry to hear that you are at this stage in you journey. and I agree that there is not much discussion here about 'losing the fight'. I don't know what else to say, except I have very much appreciated your presence on this board, and I hope and pray that you will be free of pain and suffering in this stage of your journey, and I trust that your family and friends will all be with you to support you in the months to come.

If you want access to other support services during hospice, you can check out the list of support organizations that specialize in end-of-life concerns. One list of hospice-related resources is posted on Michael's Mission website:

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Re: Beginning the end of my journey

Postby macpudd » Thu Apr 28, 2016 3:29 am

So sorry to hear your news, I hope you find emotional peace, prayers and thoughts with you and your family.
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm tumor on left side of brain
commenced anti epileptic and steroids and
01/25/18 brain craniotomy 80% of tumour removed pathology says gbm4
6 weeks of rad and Temodar chemo and then 6 monthly cycles of Temodar
MRI in Oct no tumor
Mri Jan 2019 tumour growth Feb Pet scan tumour 6cm, no surgery, starting Avastin also Lomustine

Posts: 663
Joined: Tue Jul 02, 2013 3:08 am

Re: Beginning the end of my journey

Postby PainInTheAss » Thu Apr 28, 2016 4:07 am

I'm so sorry you're receiving this terrible news. I, too, have noticed not much is said about the end. I think it's partly because patients don't want to depress others when they no longer have anything positive to share. And, of course, some just feel so rotten they are trying to get through each day, or heavily medicated.

If you are still feeling well, hospice is not just for those near-death. One blogger was on hospice for quite a while, close to a year from what I remember, after he declined any additional treatments. He had in-home visits and could call anytime about various issues like pain meds and loss of bladder control. He was still very active while on hospice up until the last month. You can read about his experiences stating here:

Another rare window into this experience came from a wonderful outpouring of support when a poster, Marco, claimed he was going to take his life after being told nothing else could be done. He then continued posting for many months up until his last few days sharing his experiences even rejecting an offer by his doctor to be put into a medically induced coma. What I learned from this is that, in the end, all that matters and all that you wish for is one more day, no matter how much pain you have to endure to have it. I keep that sobering reality in my mind as I face each day, so grateful to have it. That's all we all ever have... Just today. There is no promise of tomorrow.

47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

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Re: Beginning the end of my journey

Postby Willow.NZ » Thu Apr 28, 2016 4:32 am

I'm sorry you are at this point, unfortunately no one has control of the cancers path, my family knows this only too well right now. I hope once you come to terms with this news you have opportunities to spend time doing things that bring you peace & joy with people you love.
Dad diagnosed Sept 14 Stage IV. Age 57yrs. Transverse colon - spread to Retroperitoneal, Mesenteric & Supraclavicular lymph nodes. Folfiri commenced Sept 14.
April 15 - Bowel resection
August 15, stable scan
Feb 16 - No signs of cancer on scan...stop chemo & scan in 3 month
Scan April 16, Crazy growth to stomach, lymph nodes & multiple mets to liver. Commencing Folfox.
August: chemo not working. Stopped treatment.
September 3rd 2016 peacefully left this earth.

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Re: Beginning the end of my journey

Postby WriterGirl1969 » Thu Apr 28, 2016 8:09 am

Crystald wrote:I am so frightened, but I think that is normal. I am not ready, I am angry, disappointed, just a cacophony of emotions.
I pray for everyone every night, with His help I may be around a while and update the experience I am having with the end of the journey.

Crystald - Thank you for your honest, heartfelt post. You are still so young to have to face this. My heart goes out to you. I know that all of us here are looking at this possibility in one fashion or another, but hearing a doctor say that must be incredibly difficult. I don't know that any of us are really ready, but as you said, I pray for everyone here every night also. I hope beyond measure that God grants you peace, no matter what. Whether this break allows you some time to heal, whether anything happens that allows you to continue, or whether you have whatever time is left to spend with your loved ones, I pray that you have peace. Peace of mind, and heart; the peace that passes all understanding, because that is the truth of it. It's beyond understanding.

Hugs and prayers,
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

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Facebook Username: Riann Fletcher
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Re: Beginning the end of my journey

Postby DarknessEmbraced » Thu Apr 28, 2016 2:29 pm

I'm so sorry!*hugs* :(
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! :)

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