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Friends, i am struggling, news of cancer are awful

Posted: Tue Oct 09, 2018 12:28 pm
by Lydia666
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.

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

Posted: Tue Oct 09, 2018 2:14 pm
by stu
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

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

Posted: Tue Oct 09, 2018 2:15 pm
by stu
Ps . My mum’s grandkids were little when she was diagnosed, now my son is towering above us all .

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

Posted: Tue Oct 09, 2018 5:25 pm
by Spazzyjanet
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.

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

Posted: Wed Oct 10, 2018 12:21 am
by Writingdoc2
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!

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

Posted: Wed Oct 10, 2018 10:47 pm
by Lydia666
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)

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

Posted: Thu Oct 11, 2018 4:58 am
by Spazzyjanet
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

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

Posted: Thu Oct 11, 2018 3:49 pm
by orlar
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

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

Posted: Thu Oct 11, 2018 4:02 pm
by Lydia666
Thank you Larry. You ve lived 1.5 years already since diagnosis. This gives me hope!!

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

Posted: Fri Oct 12, 2018 2:27 pm
by teresajj1
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?

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

Posted: Sat Oct 13, 2018 6:17 pm
by Lydia666
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.

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

Posted: Sun Oct 14, 2018 9:58 am
by peanut_8
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

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

Posted: Mon Oct 15, 2018 11:35 am
by CRguy
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

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

Posted: Mon Oct 15, 2018 12:13 pm
by Lee
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

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

Posted: Sun Oct 21, 2018 7:41 pm
by jortego128
Im so sorry Lydia... please think positive thoughts and explore all possible options. Dont give up!

I will be praying for you and your family...