Time

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Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Time

Postby Andrea1976 » Fri May 22, 2020 1:19 am

I am deciding if treatment make sense. I can go anywhere in the world to die. Have you considered it? My kids are 16 and 18. They will survive. Unless I have hope for treatment, I don’t want to do it.

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Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Re: Time

Postby Atoq » Fri May 22, 2020 1:36 am

Hi,
Being stage I and the fact that you can follow up and catch it up early if the cancer comes back, I think you can drop treatment. What did your doctor suggest?

Best

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

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

Re: Time

Postby boxhill » Fri May 22, 2020 10:43 am

Wow, what has happened that makes you think that you are "going somewhere to die"?

Stage 1 and removed completely sounds like a person who just has a comparatively accelerated colonoscopy surveillance schedule.

It doesn't sound as if you need to be tethered to a particular location. Am I missing something?
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

Mattie
Posts: 76
Joined: Fri Mar 07, 2014 1:06 am

Re: Time

Postby Mattie » Mon May 25, 2020 11:10 am

Stage I is curable.
4/10 debulk surgery, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node, 20+ Rad treatments
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
12/16 NED, maintaining Xeloda/Avastin
8/17 NED Dropping Xeloda. Avastin only.
3/21 NED Avastin only
10/21 Pausing Avastin Proteinuria/BP complications
12/21 Resect 4.4 x 3.6 cm lower abdominal met

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CRguy
Posts: 10474
Joined: Sun Feb 10, 2008 6:00 pm

Re: Time

Postby CRguy » Mon May 25, 2020 9:22 pm

Andrea1976 wrote:I am deciding if treatment make sense. I can go anywhere in the world to die. Have you considered it? My kids are 16 and 18. They will survive. Unless I have hope for treatment, I don’t want to do it.


Hey homie
we are ALL in uncharted territory and unprecedented times...
our CRC treatments notwithstanding !!!!!!

others here have given good counsel
I agree with them

BUTT ... if you need more input/ info / personal contact
PLEASE seek out some feedback from professional health care counsellors

Many of us have done so AND ...
we are all still here

Don't take this all on yourself
WE are here with you and FOR you

Harmony sista'
ALWAYS on the Journey

PM me ANYTIME

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

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Time

Postby NHMike » Tue May 26, 2020 9:30 pm

I had some pretty dark thoughts and updated my will a few times through treatment so cancer can play with your head and get you worrying a lot.

I remember thinking that it was a death sentence when diagnosed. I later spoke with my GI doctor and he said it's going to be rough but that I'd make it through treatment. I'd guess that your treatment would be a lot simpler.

Have a chat with your doctor and talk about the prognosis and your options. Consider a second opinion at a top hospital if you are still unsure.

We can answer many questions but we're not your doctor.
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

del
Posts: 119
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Time

Postby del » Wed May 27, 2020 6:21 am

Andrea1976 wrote:I am deciding if treatment make sense. I can go anywhere in the world to die. Have you considered it? My kids are 16 and 18. They will survive. Unless I have hope for treatment, I don’t want to do it.


Did you hear something about your recent scans? What did your doctors say about the enlarged lymph node? It sounds like you have not received good news.
Male, 33 @ dx, stage 1 RC (T1N0M0 mod. diff. 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE
2021 - 5 years of clean scopes/scans/bloods

zephyr
Posts: 369
Joined: Thu Aug 18, 2016 7:31 am

Re: Time

Postby zephyr » Wed May 27, 2020 4:20 pm

I'm so sorry you're going through this Andrea but, like the others, I'm wondering if we're missing an important piece of information. Why do you think you're going to die? Cancer is not the death sentence it once was and Stage I is curable. It might be a tough 6 months but then you'll likely be done and you can get on with the rest of your life. Based on my own personal experience with cancer, I would encourage you to very strongly consider going through with treatment. I was diagnosed as Stage I many years ago during a routine, baseline colonoscopy. The cancer was removed during the colonoscopy but there was a lot of high grade dysplasia - precancerous cells - in surrounding tissue. I elected not to have surgery but instead to have them try to scrape away the dysplasia over a period of a few months, and to wait and watch instead. If I knew then what I know now, I would have had the surgery. I went through several subsequent follow-up colonoscopies, all clear, and then BAM! - all of a sudden I was Stage IV. From clear to Stage IV in 3 years. Go figure. Please give yourself a chance. Please talk to your oncologist. Please get a second opinion at a major cancer center, hopefully from a GI cancer specialist, before you give up. Stage I is curable.

PM me anytime if you want to talk.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

stu
Posts: 1614
Joined: Sat Aug 17, 2013 5:46 pm

Re: Time

Postby stu » Wed May 27, 2020 5:58 pm

Just wondering if you got more information on your lymph node that has restaged you and caused your concern !

If that is the case I would have to say I am really glad my mum endured the treatment and I was a lot older than your children . She is also glad she managed it . There has been so much joy still in her life . She has played a big role in her grandchildren’s life and squeezed in a lot of living . Would she have continued to subject herself to treatment that did not work I suspect not ! However it did and opened up surgical options that has given her years to enjoy . Even now she is going for deep isolation to avoid corona . She still has her eye on the future .
Hold on tight ,and I hope you have been able to process your situation,
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 .


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