Thanks everyone! ....it's not good.

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Cherie
Posts: 590
Joined: Fri Jul 12, 2013 11:20 am
Facebook Username: cherie
Location: New Zealand

Thanks everyone! ....it's not good.

Postby Cherie » Tue Jan 20, 2015 10:10 pm

Wow. What a whirlwind week and a half. I was flown via helicopter to Waikato hospital in New Zealand. It is a large understaffed grotty hospital. I spent seven days throwing up every hour or two with bloody stools. Till one day finally a doctor said that's it, your having surgery. They cut me open to find that cancer had stuck my small bowel together and it is all over my peritoneal cavity. I saw the photos and cancer looks like pimples in the beginning something so small that is so deadly. I got myself a new loop illeostomy, none of the cancer was removed. Because I have no large bowel taking out more bowel is not an option.

I went to discuss my case with my oncologist yesterday who doesn't want me to do more surgery. I am glad of this I am too thin and rundown for anything like HIPEC and she doesn't want me on more chemo as that nearly killed me too. I'm giving myself three weeks to recover from this and the shock and then I will start Immuno therapies. My doc says I have a year maybe two if I'm lucky.

I'm tired and devastated. There isn't even a word for what I feel. And when I see my daughter I have to do everything in my power to hold back my tears. My five year old is going to grow up without a mother.

Thank you so much for all your emails. I could not get onto the website on my phone. But I did get all your messages and I will try to catch up with each of you as I get energy back. Maia you are amazing thank you for fighting for me. I am close to Hamilton. I just don't know what to say....i'm just so sad I though I had beat this.

Love to you all
Cherie
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

Rheaeliza
Posts: 421
Joined: Fri Dec 14, 2012 4:42 pm
Location: New York, New York

Re: Thanks everyone! ....it's not good.

Postby Rheaeliza » Tue Jan 20, 2015 10:19 pm

I just have no words, for what you must be going through. I'm so sorry, I hoped so much you were on a slow but good road. Sending you love and light.
12/7/12: 30 yrs. old, Dx stage 4b.mets to liver, ovary, nodes, ommentum.
7 months chemo, shrinkage!
8/26/13 HIPEC, colon resection,hysterectomy, appndx, gallbladder out.
9/12/13:leak in colon, temp. loop ileost, home 9/18
11/3/13: liver resect.
1/2014 Ostomy reversal, one week later, abcess surg., fistula, tpn.
No more chemo, NED since 11/13

DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Thanks everyone! ....it's not good.

Postby DarknessEmbraced » Tue Jan 20, 2015 10:25 pm

I'm not sure of the right words to say. I wish you weren't going through this! I'm so sorry that you have to deal with all of this! Even though I'm not saying the right words please know that you are in my thoughts!
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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CRguy
Posts: 10474
Joined: Sun Feb 10, 2008 6:00 pm

Re: Thanks everyone! ....it's not good.

Postby CRguy » Tue Jan 20, 2015 10:28 pm

Sucknitude is not adequate Cherie ....

Fucknitude

We are with you my friend .... whatever you need
CRguy

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NZJay
Posts: 640
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: Thanks everyone! ....it's not good.

Postby NZJay » Tue Jan 20, 2015 10:36 pm

Absolutely gutted for you and your little girl and your husband, and also for myself. I was believing and hoping for the best and happiest outcome after all the bullshit you've been through, and all the support you've been showing me.

Not sure what to say except loads of people have defied the odds and smashed their prognosis to pieces. You can do the same.

Hit me up for a drink some time.
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

jvaime21
Posts: 308
Joined: Sat Sep 14, 2013 5:35 am
Facebook Username: alpha21_2003

Re: Thanks everyone! ....it's not good.

Postby jvaime21 » Tue Jan 20, 2015 10:48 pm

Oh my darling Cherie.. I hate this cancer much. Be strong my Dear .. I have no words to say.


Hugs you
Retchel
wife of Stg 4 SRC
Diag.'12-2013(rd+Xeloda+oxi)
04/16/14 Clear CT-
8/25/14Kidney blockd nepro.
Rec. lung 1 enlrg. Abdomen
Inoperable/incurable /Chemo for life
11/21/14 Xeloda+Irinetocan 6x
hoping for a bright sunny day

JJ2212
Posts: 268
Joined: Mon Oct 14, 2013 3:54 pm
Location: Montréal, QC

Re: Thanks everyone! ....it's not good.

Postby JJ2212 » Tue Jan 20, 2015 11:08 pm

Well f*ck. No other words come to mind. I'd join you and NZJay for a drink if we weren't so far apart.

Take care of yourself as best you can.

Janie
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

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: Thanks everyone! ....it's not good.

Postby lpas » Tue Jan 20, 2015 11:25 pm

God, this makes me so angry. It's just not f'ing fair. Cherie, I am absolutely,100% not giving up hope for you. Rest and regain your strength. You and your family are in my prayers.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

Stanfordmom
Posts: 612
Joined: Wed May 14, 2014 1:32 am

Re: Thanks everyone! ....it's not good.

Postby Stanfordmom » Tue Jan 20, 2015 11:39 pm

Cherie,
So sorry to hear this :(

Hugs to you (((((((Cherie)))))))

You and your family are in my prayers.

Sha
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: Thanks everyone! ....it's not good.

Postby peanut_8 » Tue Jan 20, 2015 11:42 pm

So very sorry to hear this Cherie. Don't know what else to say, except very very sorry.
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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mstults
Posts: 1327
Joined: Fri Nov 30, 2012 11:23 am

Re: Thanks everyone! ....it's not good.

Postby mstults » Wed Jan 21, 2015 12:32 am

So sorry to hear. Don't give up. Words don't do the situation justice. Just know you have many caring people praying for you.
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

https://www.facebook.com/michael.stults2/about?ref=home_edit_profile&section=work

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Sophy
Posts: 261
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Re: Thanks everyone! ....it's not good.

Postby Sophy » Wed Jan 21, 2015 12:35 am

Cherie, sending love and gentle hugs. Praying that there are good days ahead for you and your family to share.

Sophy
dx T3N1M0 Feb 2011 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
June 20 CT shows nodule, bronchoscopy confirms is scar tissue, still NED
Dec 20 stopping Xeloda continue celebrex, cimetedine
Aug 21,March 23 scans show still NED
March 2023 CURED - discharged from Oncology, no more scans or follow up

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Thanks everyone! ....it's not good.

Postby Steph20021 » Wed Jan 21, 2015 1:15 am

I am so sorry. This beast is relentless. You and your family are in my prayers.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: Thanks everyone! ....it's not good.

Postby skypup » Wed Jan 21, 2015 1:21 am

Cherie, I am heartbroken. So very sorry. CR said it, fucknitude.

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: Thanks everyone! ....it's not good.

Postby michelle c » Wed Jan 21, 2015 1:39 am

Hi Cherie,

I hate it that you have to go through this, it sucks! What a shock! I hope that you can build yourself up enough to consider HIPEC - it is aggressive treatment but you are young and have so much to live for - I hope that you will get more opinions. I know that you must feel mentally and physically exhausted - do you have someone who can do the groundwork for you?

You are in my thoughts - wish I could do something to help you rather than being over here and just writing this.

Sending you love and strength from afar xoxox
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair


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