Alive and "oh well" in the North

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CanadianGirl
Posts: 90
Joined: Fri Nov 26, 2010 6:04 pm

Alive and "oh well" in the North

Postby CanadianGirl » Tue Mar 12, 2019 11:09 am

It has been awhile since I have been here but thought I would give an update on how the "do nothing" approach has been working for me. I try to jump in periodically at least around the anniversary of my HIPEC operation to update those who remember me and give hope to those who have unfortunately found it necessary to become a member of this site. I was diagnosed stage III eleven years ago and stage IV nine years ago. I had chemo and then HIPEC in 2011 but the cancer returned six months later. I chose not to do chemo pills or radiation at that time and opted to take the wait and see approach. This worked well for two years as the tumours were growing slowly. By 2013 the inoperable tumour reached a size that my doctors and I felt we should try to do something about. I did about 26 rounds of radiation and we successfully shrunk the tumour down. Last month marked the 8th anniversary since HIPEC and the 6th since radiation. My CEA has always been a good indicator of growth and has remained stable. However my latest scan has shown growth so we threw me through another PET scan which showed that my tumour was growing substantially again. We have discussed several options and surgery is not possible, radiation again is out of the question and aggressive chemo probably is not a great idea because I didn't complete all rounds the first time. We are thinking about Xeloda or alternatively, five consecutive days of 5FU injections then 23 days off for 3 months. Has anyone else done this? In any case, I have already had ten more years than expected, my QOL has been wonderful and this is not over yet. There are lots of long term survivors out there and there is always hope. Keep on Living Life!
06/08 gall bldr rmvd
06/08 rgt hemi, app rmvd
07/08 hemi, dx stg 3c
09/08-03/09 5FU 11 rds, neuropathy
06/10 hysterectomy,debullking,dx carcinomatosis, terminal
09/10 2 rds Xeloda
01/11 CR HIPEC colon rmvd
03/11 ileo rvrsl
07/11 cancer returns
12/12 radiation 26 rnds

Kbee816
Posts: 8
Joined: Mon Mar 11, 2019 6:05 pm
Facebook Username: Karen.wayt

Re: Alive and "oh well" in the North

Postby Kbee816 » Tue Mar 12, 2019 12:59 pm

So sorry you are to the point of needing treatment again, but what an amazing story! Even a year without treatment seems like a dream to me, that you’ve had several gives me hope to keep dreaming:)! Did you do any other alternative therapies during your “wait and see” period? Prayers for clarity as you look for your next step...
2/17-diagnosed stage IV Mets to liver
2/17-colon resection
3/17-Folfox 8 rounds
8/17-liver resection and ablation
9/17-Folfox 4 rounds
12/17-CT showed mets to ovaries and new mets on liver
12/17-ovaries removed
3/18-clinical trial-pembro and cetuximab
3/19-tumors showing resistance.

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CanadianGirl
Posts: 90
Joined: Fri Nov 26, 2010 6:04 pm

Re: Alive and "oh well" in the North

Postby CanadianGirl » Tue Mar 12, 2019 7:27 pm

Hi,
I did not do any other treatments of any kind...completely drug free...unless you count beer. I hope things go well for you too. It is a struggle but thanks to chemobrain I seem to have forgotten the bad parts. Reading through some of these post brings some things back though and it is good for me to remember what to expect for example, I still have some neuropathy but I hope I won't need mittens to open the fridge this time.
06/08 gall bldr rmvd
06/08 rgt hemi, app rmvd
07/08 hemi, dx stg 3c
09/08-03/09 5FU 11 rds, neuropathy
06/10 hysterectomy,debullking,dx carcinomatosis, terminal
09/10 2 rds Xeloda
01/11 CR HIPEC colon rmvd
03/11 ileo rvrsl
07/11 cancer returns
12/12 radiation 26 rnds

Pyro
Posts: 274
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Alive and "oh well" in the North

Postby Pyro » Tue Mar 12, 2019 8:04 pm

You signature says terminal in 2010??
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

stu
Posts: 1163
Joined: Sat Aug 17, 2013 5:46 pm

Re: Alive and "oh well" in the North

Postby stu » Wed Mar 13, 2019 2:49 am

Fantastic to hear from you . Despite a difficult diagnosis some people just keep defying the odds . You have a wonderful approach and I am sure there is many good times ahead once you are over this latest bump ,

My mum does that weird thing too where all the bad bits seem to be quickly forgotten. I find it really strange as they are still etched firmly in my mind . But it has allowed her to really enjoy her life .

Take care,

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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Maggie Nell
Posts: 1134
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Alive and "oh well" in the North

Postby Maggie Nell » Wed Mar 13, 2019 7:32 am

Pyro wrote:You signature says terminal in 2010??



Reckon the doctors back then didn't count on CanadianGirl taking their pessimism and telling them to
stick it where the sun don't shine. :twisted:
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
July 2019 : pending liver U/S, colonoscopy
rut roh

Siti
Posts: 13
Joined: Thu Aug 01, 2019 10:58 am

Re: Alive and "oh well" in the North

Postby Siti » Sat Aug 10, 2019 5:51 am

Our oncologist have also suggested a wait and see approach. My husband had his colon resection 3 weeks ago but several distant lymph nodes seem to lit up in his PET scan. They can’t confirm metastasis without biopsy.

The oncologist said perhaps we should wait to see if the lymph nodes grow, if it does, we could start the chemo then to see if they shrink so that we know for sure the chemo works.

I found that approach to be extremely risky because if it does shrink, ok good, but what if it doesn’t? Wouldn’t that run the risk of further spread and time totally wasted before they try a different treatment?
Wife of DH (54) DX on 5/7/19 (Amsterdam)
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild type | BRAF normal
Pre-surgery PET-CT Scan 19/7/19 (Singapore): Distant lymph nodes (para-aorta, neck & hip), lit, est. size 0.5-1.5cm.
Met: clear except lit distant lymph nodes (inconclusive)
Surgery: Laparascopic Colon Resection 22/7/19
Scheduled chemo: late-August CAPEOX + Avastin x 8 (Amsterdam)

Canada777
Posts: 61
Joined: Mon Mar 28, 2016 6:24 pm

Re: Alive and "oh well" in the North

Postby Canada777 » Sat Aug 10, 2019 8:38 pm

I'm just seeing this post now. Thank you so much for sharing your story. It gives me hope! My husband is stage IV, had Hipec, and a small recurrence 9months after. So glad to know that several more years is a real possibility sometimes! It will be 4 years since diagnosis for him at the end of this year.
DH dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX & then successful HIPEC in 2016.
Diagnosis changed to appendix cancer.
One small recurrence to pelvis 9 months later.
Resumed chemo and staying stable.


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