Friends, i am struggling, news of cancer are awful

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Lydia666
Posts: 672
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Friends, i am struggling, news of cancer are awful

Postby Lydia666 » Tue Oct 09, 2018 12:28 pm

I ve had emergency surgery to unblock my intestins, i have a stoma,i am relieved in that way. I am trying to recover, to start eating and go home to my babies.

But i have cancer extensively in my peritoneum, on the intestins, they saw lots of disease when they opened me up. Obviously this is devastating. Do you know of anyone who managed to hang on for awhile with such extensive disease??

Thank you all so much.this is so much to take in in a matter of days. Obviously treatment is not even possible until i am outof the woods from surgery.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
July 2016- ileo reversal
August 2016- DCIS
Feb 24,2017- prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Mom to 4 & 7 yrs kids (6 mo. & 3.5 yrs at diagnosis in June 2015)

stu
Posts: 845
Joined: Sat Aug 17, 2013 5:46 pm

Re: Friends, i am struggling, news of cancer are awful

Postby stu » Tue Oct 09, 2018 2:14 pm

Hi Lydia ,

It is a lot to digest and find your feet after such news . Purely my opinion from our only family experiences but I believe in situations like this where it’s gone and the size matters less than how responsive you are to treatment . My mum’s liver shocked us into silence . My family are all medical . My husband was in the theatre next door when one of his coworkers came and said you might want to go support your family . On seeing the scan he came and told my mum the news . His eyes said it all . It was like a fruit bowl in there with tumours . He could offer no hope at all . However unknown to us she was supper responsive to chemo . The fruit bowl deminished to a dot on the screen after just six cycles of chemo . Other people at a lesser stage in the process don’t know just how responsive they are to chemo but when you watch it disappear off the screen it was powerful . Off chemo they grew again .
So I really do believe some people do well because they get the right treatment for them and it exceeds expectation . Obviously not all people but you have time to explore treatment .
I can’t remember if you mentioned immunotherapy options before but looking at What KatieandJacks mum is achieving with MSS gives cause to at least investigate .
You take the time you need to recover . Then get those options explored .
Holding you up till you get your strength back .
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

stu
Posts: 845
Joined: Sat Aug 17, 2013 5:46 pm

Re: Friends, i am struggling, news of cancer are awful

Postby stu » Tue Oct 09, 2018 2:15 pm

Ps . My mum’s grandkids were little when she was diagnosed, now my son is towering above us all .
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

Spazzyjanet
Posts: 21
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: Friends, i am struggling, news of cancer are awful

Postby Spazzyjanet » Tue Oct 09, 2018 5:25 pm

Hugs and love to you. I am also recently diagnosed, had surgery, and a stoma. At first they thought no spreading; now with PET they think it spread to the liver. I have 3 kids- 13, 10 and 8 that I will never be able to say goodbye to.

I am just figuring this all out like you are. Hopefully we can both find some hope.
40 yr old. Dx 9/2018, Stage IV
4.2 cm Tumor, PT3, PN2B
Grade 2, Moderately Differentiated, Invades through muscularis propria into periccolorectal tissues.
11 of 18 with metastatic adenocarcinoma w/soft tissue metastasis + removal of one cancerous node in Peritoneum.
9/2018, Colostomy (partial) and Removal of Tumer/Nodes- Proximal Colon Margin Negative
10/2018, PET shows 6 liver mets; 1 2cm, 5 smaller. 3 on left lobe, 3 on right.

Writingdoc2
Posts: 8
Joined: Mon Jul 25, 2016 8:41 pm

Re: Friends, i am struggling, news of cancer are awful

Postby Writingdoc2 » Wed Oct 10, 2018 12:21 am

You might want to consult with some well known HIPEC surgeons to get advice on next steps. I know that both Sugarbaker and Sardi will review files remotely to see if they might be able to help you. I've had two HIPEC surgeries and am doing very well. There's always hope!
Diagnosed June 2015, Stage 3C
12 rounds of Folfox, 8/15-2/16
Recurrence to abdominal wall, uterus, ovary, and fallopian tube, July 2016
HIPEC, Sept. 2016, NED
Irinotecan (clean-up), 11/16-4/17
Recurrence in abdominal wall scar, 7/17
HIPEC #2, Oct. 2017

Lydia666
Posts: 672
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Friends, i am struggling, news of cancer are awful

Postby Lydia666 » Wed Oct 10, 2018 10:47 pm

Thank you. I am flat on the floor by the news. Like a plane went thru me.

I ll try to check opinions for hipec. Understanding is for now, not an option.

If i get home in a few days, it s miracle. If i can start chemo in a couple weeks, miracle.

Please send ANY positive story my way

Lots of love
Laura (lydia 666)
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
July 2016- ileo reversal
August 2016- DCIS
Feb 24,2017- prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Mom to 4 & 7 yrs kids (6 mo. & 3.5 yrs at diagnosis in June 2015)

Spazzyjanet
Posts: 21
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: Friends, i am struggling, news of cancer are awful

Postby Spazzyjanet » Thu Oct 11, 2018 4:58 am

The two things that have helped me breathe in the last two days since learning I was officially Stage 4:

1) I got emergency help in the form of medication to help me when I feel like I am going to panic, and to help me sleep;
2) I finally met with the people who could spell out for me their plan for treatment.

Spazzy
40 yr old. Dx 9/2018, Stage IV
4.2 cm Tumor, PT3, PN2B
Grade 2, Moderately Differentiated, Invades through muscularis propria into periccolorectal tissues.
11 of 18 with metastatic adenocarcinoma w/soft tissue metastasis + removal of one cancerous node in Peritoneum.
9/2018, Colostomy (partial) and Removal of Tumer/Nodes- Proximal Colon Margin Negative
10/2018, PET shows 6 liver mets; 1 2cm, 5 smaller. 3 on left lobe, 3 on right.

orlar
Posts: 65
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: Friends, i am struggling, news of cancer are awful

Postby orlar » Thu Oct 11, 2018 3:49 pm

To Laura and Spazzy both, hang in there! The shock will subside. Please ask for and take any meds you think will help. I found antivan helped me sleep after being diagnosed stage 4.

Laura, you are going to need to heal so take that time. I'm sure your ONC team will be getting a plan in place for treatment options soon.

I can only relay my experience in that I had an immediate recurrence after my resection and my first chemo regimen (basically the cancer started growing all through my folfox treatment). My stage 4 diagnosis included liver and multiple lung mets, multiple omentum and retroperi implants. Long and short of it-lots of cancer. The second regimen of folfiri and avastin shrank things for a while then stopped. Currently, I'm in a clinical trial.

All I'm trying to say is that as bad as it seems, there may be an option just around the corner. A treatment to stabilize or shrink your tumors could be waiting. As it's been said many times before on the forum, everyone responds differently to chemo/immunotherapy and other procedures. New therapies are being developed regularly and should give you hope. They do me!

Good Luck to all of us in the battle!

Larry
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56

Lydia666
Posts: 672
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Friends, i am struggling, news of cancer are awful

Postby Lydia666 » Thu Oct 11, 2018 4:02 pm

Thank you Larry. You ve lived 1.5 years already since diagnosis. This gives me hope!!
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
July 2016- ileo reversal
August 2016- DCIS
Feb 24,2017- prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Mom to 4 & 7 yrs kids (6 mo. & 3.5 yrs at diagnosis in June 2015)

teresajj1
Posts: 34
Joined: Sun Mar 27, 2016 7:36 pm
Location: Florida

Re: Friends, i am struggling, news of cancer are awful

Postby teresajj1 » Fri Oct 12, 2018 2:27 pm

I recently went through the same thing. Were they able to remove all of the cancer in surgery? I just had cytoreductive surgery. Everything was removed but chemo does not help according to my doc. Is HIPEC an option?
Dx 3/16 @ 36yrs Stage IIIB-6/18 Stage IV
RT Hemi-colectomy
T3N1M0. 2/37 lymph nodes
4/2016 Started 12 rounds of 5 FU & Oxi Chemo
7/2016 Stopped chemo after 5 rounds due to chest pain
8/2017 MUYTH Gene
10/2017 Clear CT Scan; CEA 1.9
5/2018 CEA 447 & CA-125 144
6/2018 Stage IV w/drop metastases to peritoneal cavity
7/2018 Cytoreductive surgery & Hipec (3 tumors, 2 nodules on bladder, and ovaries removed)
10/2018 Clear CT

Lydia666
Posts: 672
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Friends, i am struggling, news of cancer are awful

Postby Lydia666 » Sat Oct 13, 2018 6:17 pm

teresajj1 wrote:I recently went through the same thing. Were they able to remove all of the cancer in surgery? I just had cytoreductive surgery. Everything was removed but chemo does not help according to my doc. Is HIPEC an option?

The surgery i had was unblock my intestines. All cancer is still inside.
Hipec might be an option in some distant future if chemo works and shows it can slow down the disease.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
July 2016- ileo reversal
August 2016- DCIS
Feb 24,2017- prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Mom to 4 & 7 yrs kids (6 mo. & 3.5 yrs at diagnosis in June 2015)

User avatar
peanut_8
Posts: 2270
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Friends, i am struggling, news of cancer are awful

Postby peanut_8 » Sun Oct 14, 2018 9:58 am

Laura, have you been tested for Lynch Syndrome, and do you know if you're MSS or MSI?

Seems like your previous chemo didn't work very well, and you might be a candidate for Keytruda.

Best Wishes,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

User avatar
CRguy
Posts: 9612
Joined: Sun Feb 10, 2008 6:00 pm

Re: Friends, i am struggling, news of cancer are awful

Postby CRguy » Mon Oct 15, 2018 11:35 am

Hey Laura

sending you MEGA POSI +++++++ Vibes for getting recovered from surgery
and outta' the big house ... back home.

Stay strong and keep pushing forward with your docs

Harmony sista'
CRguy on the Journey
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Lee
Posts: 5678
Joined: Sun Apr 16, 2006 4:09 pm

Re: Friends, i am struggling, news of cancer are awful

Postby Lee » Mon Oct 15, 2018 12:13 pm

Laura,

I am so sorry to read this. I wish I had some words of wisdom other than one day at a time. Know that you are in 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 - 10 years and counting!


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