3 months left of life

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Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

3 months left of life

Postby Trying » Wed Oct 14, 2020 6:25 pm

So the stunt they put in my liver last week didnt work. I was back at the hospital ttoday with jaundice that hasn't left and yellow eyes. We talked to my oncologist who said my liver has been taken over by cancer almost completely. There's no point in chemo as mu body wont handle it. I always thought of an alternative route but if even vitamins aren't getting through I dont see which alternative route to take. This is it. Jm terrified and praying for a miracle. The dr said j will just become more jaundice and tired and that I will pass. I already had another opinion but with the liver the way it is there is nothing they can do. Sorry for my family. My poor little boy! You have all been such a support in 2.5 years. Thank you all

Nicole
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

User avatar
ginabeewell
Posts: 463
Joined: Wed Oct 24, 2018 10:30 am

Re: 3 months left of life

Postby ginabeewell » Thu Oct 15, 2020 12:16 am

Ugh, I am so sorry. Not sure what to say or how best to be helpful. I know I’ve been reading about fenben protocol, and it’s something I might choose to try if I get to the point where traditional chemo isn’t helping.

What about trials? Are you eligible for anything?

I hope you have someone who is supporting you tonight in real life. But hopefully folks here will be of some comfort.
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?

Hopepray
Posts: 17
Joined: Fri Feb 14, 2020 9:48 pm

Re: 3 months left of life

Postby Hopepray » Thu Oct 15, 2020 2:10 am

Sorry you're going through this. You are in my prayers and I pray that you get out of this. I have read a lot of ppl do get out of tough situations like this. Just speak to your docs and get few more options and try it you never know what might work.
Caregiver to mom
54 y, dx 2/20, T3N1B Upper Rectal CA,14 cms from AV
2.5 x 1.3 cm, base 1.5cm
CEA: 2.8 2/10/20;; 2.3 4/20;;1.3 6/20
CT and MRI show the tumour + Ground Glass Nodule Lung + Hemangioma Liver.
Grade 1 Tumor
EMVI absent
Genetics not done
28x/Cap/ CRT 28/Mar/20
MRI- 4/20- no mass seen, lymph node in peri-rectal space.
Pet/CT 6/20 no nodes or rectal mass, no Glass nodule in lung. Hemangioma.
Flex Sig w/ biopsy 6/20 : no mass, scar, biopsy -ve
LAR, no ileo 7/1/20
CapOX 3x begin 9/5/20

AmyG
Posts: 352
Joined: Tue Dec 25, 2018 8:08 pm

Re: 3 months left of life

Postby AmyG » Thu Oct 15, 2020 9:02 am

Well that's awful. I have no words of wisdom, just wanted you to know I'm thinking of you. I realize that doesn't help you or you liver. :roll: but I do hope you have a real life support system.

How old is your son now?
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

Claudine
Posts: 433
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: 3 months left of life

Postby Claudine » Thu Oct 15, 2020 10:09 am

Dear Nicole,

I apologize if anything I write is inappropriate, or callous, or very unhelpful - our western society is so disconnected with the end of life, we (or at least I) do not know how to deal with it, talk about it... But, a few thoughts...

This may be totally stupid, but have there ever been liver transplants for people with cancer? Would that be an option?

I would also say - they give you 3 months, but from what I've heard from others, it is often a worst-case scenario (they do not want to give false hope, I guess) and you may have more time with your son than this. During this time, do not give up - keep researching possibilities, keep abreast of current research, there is a lot happening with cancer treatments these days. How about alternative treatments - as long as they're not a financial drain?

And unlike sudden events like heart attacks or car crashes, at least with a progressing disease one has time to make preparations - get things in order, make plans - you are a single mom but hopefully you have a good support network, relatives, close friends who can help you now, but also help your son in the event you are now longer able to take care of him? I read somewhere about mom who wrote many letters to the children she would leave behind, to be opened at special times along their lives (birthdays, graduations, etc), so a little bit of her would always be there and accompany them throughout their lives. If you have the strength and energy to do so, of course.

Again, I really apologize if what I wrote is upsetting to you, I feel powerless in the face of what you are going through...
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: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules up to 5mm
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20
Scan 09/20: nothing to report

Claudine
Posts: 433
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: 3 months left of life

Postby Claudine » Thu Oct 15, 2020 11:23 am

It looks like liver transplant is actively studied: https://www.hindawi.com/journals/cjgh/2018/9531925/
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: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules up to 5mm
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20
Scan 09/20: nothing to report

utahgal7
Posts: 14
Joined: Fri Sep 11, 2020 12:04 pm

Re: 3 months left of life

Postby utahgal7 » Thu Oct 15, 2020 12:28 pm

This is terrible and I am very sorry. I will say a prayer for you. Although, I don't know you...I wish I could give you a hug.
02/20 Rectal Cancer Diagnosis
03/20 CEA 2.7 ST Radiation - 25Gy over 5 days
04/20 LAR surgery w/ ileostomy (only 6 lymph nodes retrieved)
04/20 T3N1M0
05/20 CAPOX (had to discontinue because Oxaliplatin caused temporary blindness in left eye)
06/20 CEA 0.9
08/20 Ileostomy reversal
09/20 CEA 1.4, CT chest/abdomen/pelvis; suspicious areas in liver
10/20 MRI liver; dx hemangioma

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: 3 months left of life

Postby Trying » Thu Oct 15, 2020 4:28 pm

Thank you all for the kind words. A liver transplant is a great suggestion but since its spread to other parts they wont touch it. I appreciate of your kind responses and prayers.

Nicole
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Lee
Posts: 6128
Joined: Sun Apr 16, 2006 4:09 pm

Re: 3 months left of life

Postby Lee » Thu Oct 15, 2020 6:11 pm

Trying, words can not express the sadness I feel for this latest news. I hope & pray you still have good days ahead.

One thing I am going to recommend, write letters, special cards of special event to your son, experiences he will have in his life, especially growing up. Do it now & give to a special friend to give to him when those times come. Like special birthdays, special events like graduations, marriage, etc. Let him know how much you love him, that you are with him in spirit. Speak from the heart. While you may not be there in the physical world, you are there with him in the spiritual world.

You and your family are not far from my thoughts and prayers.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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CRguy
Posts: 10234
Joined: Sun Feb 10, 2008 6:00 pm

Re: 3 months left of life

Postby CRguy » Thu Oct 15, 2020 10:15 pm

Hey Nicole

I AM sending you prayers, best wishes
Love, Peace and Harmony

Doctors can be wrong
with guesstimates and estimates
and
Hope is always on the table

Whatever you need from us
your online family
just ask
we are here for you
and will be here with you

Namasté
" the light within me, honours the light within you "

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

Monimom
Posts: 46
Joined: Wed Jan 08, 2020 6:15 pm

Re: 3 months left of life

Postby Monimom » Fri Oct 16, 2020 11:46 am

Reading this breaks my heart for you, I don't have any advice medically as this is a new journey for us as well, please don't be offended, but one thing that jumped out at me that I really would like to say is, don't be afraid, I know that sounds so irresponsible of me to say, and I don't know if I will be admonished for saying this, but there is a God in heaven who knows you , and your situation, if you haven't or don't already , please reach out to him, I will pray for you to feel his peace with everything going on, as well as your son, again i apologize if this is offensive , but I have personally experienced the power of god, and feel compelled to share.

(((Hugs))) & many prayers,
Moni
Oct 2019 56 yo Husband DX'd
Stage 4 MCC
Colon thickening w/ apple core 3.9 cm area
Liver mets both lobes 10.4 x 7.6 cm & 9.3 x 7.7cm
innumerable small lesions
Oct 2019 Liver Biopsy
CEA Dec '19 . 3,028
Dec 2019-present 5FU, Avastin & Oxaliplatin
Jan '20. CEA 1861.8
Feb '20 CT mets 9.4cm x 6.5 & 8.0 x 6.7 cm
April '20 CEA 411.1
May '20 CT mets 8.6cm x 6.3 & 5.7 x 6.1 cm
Colon unchanged

stu
Posts: 1383
Joined: Sat Aug 17, 2013 5:46 pm

Re: 3 months left of life

Postby stu » Fri Oct 16, 2020 3:08 pm

Hi Trying ,
So sad to hear this news . I was hoping so much for better news for you and your family . Still praying for you and your family and holding you all in our hearts .
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 .

boxhill
Posts: 607
Joined: Fri Apr 06, 2018 11:40 am

Re: 3 months left of life

Postby boxhill » Fri Oct 16, 2020 6:08 pm

Dear Nicole,

I'm so very sorry to hear this news. My first thought was the possibility of transplant, since I know it has worked for some, but I gather it is not to be. Is it too late to consider the HAI pump? Trials?

I know there is a balance one has to achieve between those kind of measures and quality of life that enables one to do the work of achieving acceptance and right relationship with loved ones that will endure. I love the suggestions that others have made of writing cards and notes to be delivered to your child in the future, so that s/he feels your love and caring.

I hope that you achieve the peace and love that you and your loved ones deserve.

Janet
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
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 lymph nodes 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
8/20 MRI NED

NHMike
Posts: 2498
Joined: Fri Jul 21, 2017 3:43 am

Re: 3 months left of life

Postby NHMike » Fri Oct 16, 2020 8:25 pm

Sorry to hear this. I also thought of transplant but I guess you'd need a donor and I don't know how that works. I would look at trying to do the most with remaining time. This is what I was thinking about after diagnosis not realizing that I could survive.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

DarknessEmbraced
Posts: 3499
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 3 months left of life

Postby DarknessEmbraced » Sat Oct 17, 2020 12:37 pm

I'm so very 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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