Just diagnosed and it's EVERYWHERE...what to do now??

Please feel free to read, share your thoughts, your stories and connect with others!
lovemyameliasky
Posts: 6
Joined: Tue May 08, 2018 7:51 am

Just diagnosed and it's EVERYWHERE...what to do now??

Postby lovemyameliasky » Tue May 08, 2018 9:10 am

Hi everyone,

I'm writing this from the hospital room after I've been informed I have colon cancer with extensive metastases to my spine (from my neck to my tailbone), brain, liver, lungs, ovaries, knees, shoulders, and pelvis. Obviously I am in shock and know this is very, very, very, extremely bad. I had very few symptoms apart from intermittent diarrhea and a sore back for the past few weeks.

I'm 36 years old and the mother to a gorgeous 5-month-old (Amelia) and loving wife to my amazing husband of nearly 12 years.

To have any chance at all of surviving this for a few years, given my young age and the fact that I've had no treatment at all so far, what would you do in my shoes? Which hospitals and doctors would you recommend? What treatments would you pursue? Doctors at my local hospital are encouraging me to immediately seek help from a major cancer center and have floated terms like immunotherapy, radiation, and chemo--would any of these give me a chance?

I can't think straight and know I need a step-by-step plan right this second. I live in Atlanta, Georgia, and can travel anywhere immediately. I'm willing to do WHATEVER it takes to give me a shot at having longer with my baby girl. Thank you immensely for any help you can provide.
Last edited by lovemyameliasky on Tue May 08, 2018 9:54 am, edited 1 time in total.

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: Just dismissed and it's EVERYWHERE...what to do now??

Postby Caat55 » Tue May 08, 2018 9:53 am

Wow, I don't have any advise just support and prayers. There are wise people here who can offer more.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

SarahS
Posts: 49
Joined: Sat Mar 11, 2017 12:44 pm

Re: Just diagnosed and it's EVERYWHERE...what to do now??

Postby SarahS » Tue May 08, 2018 10:45 am

First off, don't panic! . Easier said than done, I know. My husband also had extensive metastatic spread at diagnosis in Nov 2016 and he;s still here fighting today.
We are also in Atlanta Georgia. If you are not already I would go to Emory university hospital, they have access to some of the latest clinical trials and will be aggressive with your treatment at your young age.
You will really need to know the mutational status of your tumors before you decide on a plan of action and will determine if you are eligible for immunotherapy .
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras G12C MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Just diagnosed and it's EVERYWHERE...what to do now??

Postby O Stoma Mia » Tue May 08, 2018 10:55 am

Here is a list of the top cancer hospitals in the country.
Best Hospitals for Cancer
https://health.usnews.com/best-hospitals/rankings/cancer

In Atlanta, there is an NCI Designated Cancer Center
Emory Winship Cancer Institute
https://winshipcancer.emory.edu/patient-care/cancer-types/colorectal-cancer.html

aja1121
Posts: 212
Joined: Sat Jun 28, 2014 5:12 pm

Re: Just diagnosed and it's EVERYWHERE...what to do now??

Postby aja1121 » Tue May 08, 2018 11:51 am

You must be completely shell-shocked right now. Just remember, nobody knows your expiration date. My husband was given six months after his rectal cancer recurred; that was two years ago.

The first thing I'd want to know in your situation is whether my cancer is MSS or MSI and what specific mutations it has. This information will help determine which drugs (chemo and/or immunotherapy) will be most effective against the cancer. It will require a biopsy in order to get tissue for testing. My husband was diagnosed during a colonoscopy and they took samples at that time. Definitely get an appointment with whatever cancer center you want (I'm not from the area so I have no recommendations on that) but if it's not soon enough for you, ask your local doctor if they can help you get started on the testing.
DH dx Stage 3B rectal ca 5/23/14 (age 41)
6/14 chemorad | 10/14 LAR, all nodes clean
12/14-04/15 FOLFOX x 10
05/15 VATS/lung met, 06/15 ileo reversal
09/15 local recurrence, 10/15 colostomy
11/15 FOLFIRI x 4, major growth, 02/16 tumor debulked
11/16 Xeloda/Avastin until progression 08/17
09/17 start NCT02024607 (BBI608 + FOLFIRI arm) until progression 02/18
03/26/18 start NCT02817633 (anti-PD-1 + anti-TIM-3) until progression 06/19/18
06/19/18 start NCT03175224 (c-Met inhibitor)

kandj
Posts: 212
Joined: Sun Sep 27, 2015 11:29 am

Re: Just diagnosed and it's EVERYWHERE...what to do now??

Postby kandj » Tue May 08, 2018 12:20 pm

I am so sorry! This diagnosis of nothing, just living your normal life to stage 4 cancer is so shocking and scary. We live near MD Anderson but did not get very good answers and responses from them regarding the extent of DH's cancer. We sought out a specialist at Memorial Sloan Kettering in NYC and got a much better treatment plan. With such a young child involved who needs you, your desire to fight is going to fuel you. Let it. Take it and live off it to fight. I would reach out to all Major cancer centers ASAP and see who can give you viable options. Mayo, Cleveland Clinic, Emory, MSKCC, MDAnderson, etc. Be persistent. Get family and friends to call too.
wife to DH, dx 8/15 stage IV @36
Told unresectable liver Mets
Primary resection and HAI pump placed Dec 2015 at MSKCC, FUDR started Dec 2015
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
46 rounds of chemo 8/15-5/18

User avatar
mmblz
Posts: 53
Joined: Sat Oct 10, 2015 3:03 pm

Re: Just diagnosed and it's EVERYWHERE...what to do now??

Postby mmblz » Tue May 08, 2018 7:18 pm

kandj wrote:I am so sorry! This diagnosis of nothing, just living your normal life to stage 4 cancer is so shocking and scary. We live near MD Anderson but did not get very good answers and responses from them regarding the extent of DH's cancer. We sought out a specialist at Memorial Sloan Kettering in NYC and got a much better treatment plan. With such a young child involved who needs you, your desire to fight is going to fuel you. Let it. Take it and live off it to fight. I would reach out to all Major cancer centers ASAP and see who can give you viable options. Mayo, Cleveland Clinic, Emory, MSKCC, MDAnderson, etc. Be persistent. Get family and friends to call too.


This is great advice.
It's good that your local hospital suggested a major hospital. It's easier to follow that advice than to be questioning it on your own.
Do whatever it takes and do it quickly. Every day and week can make a difference as far as starting treatment.
38yo married 14 years. 4 kids 10, 8, 5, 3
2015-09-21 colonoscopy finds tumor in sigmoid, partial obstruction
2015-09-22 CT no mets, path G2 adenocarcinoma, CEA 1.2
2015-09-29 lap hemicolectomy at MSKCC
2015-10-06 pT3 N1a M0 stage IIIB
2015-10-22 folfox started - 12 rounds, last 4 no oxaliplatin
2016-10-27 clear CT !

mariane
Posts: 624
Joined: Sun Sep 13, 2015 6:16 pm

Re: Just diagnosed and it's EVERYWHERE...what to do now??

Postby mariane » Tue May 08, 2018 8:43 pm

I am very sorry.
I would take a look at your MSS/MSI status. If you are MSI you may respond very well to immunotherapy. Somebody has already mentioned immunotherapy to you??
I would also look at your pathology report and mutation status. I would treat cancer according it's mutation status if MSS.
Major cancer center is excellent idea.
I am a patient of Dr. Kemeny at MSKCC in NY and Dr. Ballard at Piedmont Cancer Institute in Atlanta.

Hugs,
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

lovemyameliasky
Posts: 6
Joined: Tue May 08, 2018 7:51 am

Re: Just diagnosed and it's EVERYWHERE...what to do now??

Postby lovemyameliasky » Tue May 08, 2018 8:59 pm

Thanks so much, all. I'm still in shock and denial to be honest. How can this be real life???

I haven't yet received the final pathology report. How do I go about finding out if I'm MSI/MSS for immunotherapy purposes? Will that be included in the full report?

Also, as far as clinical trials go, how do I go about finding out which one(s) I might be eligible for? How long does it take to enroll in one and start treatment? I'm already in considerable pain from the spinal lesions and am very concerned that I'm going to run out of time before I can even try any treatment. I'm trying so hard to stay positive and upbeat for my family but this all just plain sucks honestly. :( Thank you all so very much for your help.

User avatar
Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Just diagnosed and it's EVERYWHERE...what to do now??

Postby Shana » Tue May 08, 2018 11:10 pm

Just wanted to send you prayers and lots of positive wishes that you find the right treatment plan and get help soon!

Remember no one fights alone! You've come to the right place for support and guidance. You deserve the very best medical treatment possible. Hopefully immunotherapy is an option, it has worked some miracles for members of this forum.

Take care and let us know how you're doing

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

SoConfused
Posts: 1024
Joined: Mon Jan 30, 2012 2:40 pm

Re: Just diagnosed and it's EVERYWHERE...what to do now??

Postby SoConfused » Wed May 09, 2018 12:27 am

I am at a loss for words adequate for what you are going through. My only comment/recommendation would be to use a multi-disciplinary practice/institution whose various experts (oncologist, radiologists, surgeons, nutritiinist, counselor, social worker, etc.) can work together closely and in a timely fashion to advance your care/treatments.

Also, do not let the anxiety and fear (both very normal) rob you of your joys ... enjoy spending time with your precious daughter and don’t focus on what is to come - enjoy every second of the here and now. A strong mind will help your physical recovery.
Stage IV CC

User avatar
Atoq
Posts: 312
Joined: Wed Oct 25, 2017 9:31 am

Re: Just diagnosed and it's EVERYWHERE...what to do now??

Postby Atoq » Wed May 09, 2018 1:12 am

SoConfused wrote:I am at a loss for words adequate for what you are going through. My only comment/recommendation would be to use a multi-disciplinary practice/institution whose various experts (oncologist, radiologists, surgeons, nutritiinist, counselor, social worker, etc.) can work together closely and in a timely fashion to advance your care/treatments.

Also, do not let the anxiety and fear (both very normal) rob you of your joys ... enjoy spending time with your precious daughter and don’t focus on what is to come - enjoy every second of the here and now. A strong mind will help your physical recovery.


I can only quote and send you a lot of positivity and strenght.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

stu
Posts: 848
Joined: Sat Aug 17, 2013 5:46 pm

Re: Just diagnosed and it's EVERYWHERE...what to do now??

Postby stu » Wed May 09, 2018 2:03 am

Hi , others have given you the best advise and they have insight into managing this disease . I just want to add that you are not alone . We as a family have seen just how powerful chemotherapy can be for some people . In a stage 4 setting it is more important how you respond to treatment and there in lies the hope .
Take special 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

rp1954
Posts: 1379
Joined: Mon Jun 13, 2011 1:13 am

"Today"

Postby rp1954 » Wed May 09, 2018 3:44 am

We had 1st day and 1st week actions for an immediate, strong counterattack with some of the best "luck". My wife's colon cancer was far worse than we knew but we made it work anyway.

I'll list important tools we've used and improved on, that you can do yourself, today.

1. Get a superchemistry blood test with extra cancer markers.
Potentially a big hospital is fastest (report today possible) but will often bog down for days or longer. The other question is whether they accept patient requests/demands for uses (extra tests) when they don't understand about underutilized research. For you, these tests are especially important to spot problems and important opportunities, asap. Unfortunately the average medical team is not wired into your situation, might balk over $100-$300 of "unnecessary tests", and often bully/initimidate patients with obstruction and chuckles.

However, you can get a rush order yourself for a blood draw through a national blood lab on the phone, perhaps Life Extension at 1-800-208-3444

Until (if) you get extended information from surgical biopsies and (slow) genetic tests, these extra, initial blood tests can help fill many gaps, today and tomorrow. Already 8 years of tomorrow for us.

2. Immune boosts and hitting common targets
Metastatic colorectal patients typically have major immunosuppression, depleted lymphocytes, anemia, and some gross or extreme nutrient deficiencies/depletions, all interacting for the worse. Cancer crossing the blood brain barrier is likely a (rare) symptom with these problems.
a. Fastest (e.g. Walmart): 800-1600 mg cimetidine, megavitamin D3 (15,000-60,000 iu) and megavitamin C (4000 - 16,000 mg/day), 81mg - 100 mg aspirin - all these per day
The higher megavitamin D3 levels, especially at 50 -100,000 iu/day use extra magnesium and menatetrenone (MK-4 type of vitamin K2) with no explicit calcium supplements allowed (incidental calcium contained in supplements limited to 250-400 mg per day)
b. rest of what we used, initially: these + modified citrus pectin, usually in a health food store or online

My wife recruited a granulocyte army more than 10x larger than her lymphocyte stock and destroyed much of her cancer in the first few weeks. None of our doctors have tried or seen this before.
Our story
and a summary our first steps.

Longer term, you have several major treatment possibilities.
1. If your biopsy is MSI(H), a small percentage of mCRC patients, then they might use a PD 1 inhibitor that can have dramatic effects, right off the bat.
2. Chemo Folfox (or Xelox) + Avastin has been the typical first mCRC treatment for some years now. Sometimes Folfiri is used instead.
3. Metronomic chemo and immunochemo. Developed in Japan for oral chemo+PSK+cimetidine, and in the US, for oral chemo + Celebrex (celecoxib). Thesse are what we chose with some therapeutic extras. Some of our stuff crosses the blood brain barrier.
4. Supportive or even therapeutic nutrition. For us, so far, with carefully selected molecules, tolerated maximums have been the most responsive.
Last edited by rp1954 on Wed May 09, 2018 4:47 am, edited 1 time in total.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

michelle c
Posts: 1861
Joined: Wed Dec 02, 2009 3:58 am

Re: Just diagnosed and it's EVERYWHERE...what to do now??

Postby michelle c » Wed May 09, 2018 4:39 am

A cancer diagnosis is extremely unsettling.Have you just found all that out from your current stay in hospital? What a lot to take in. My heart goes out to you at this time especially while you take it all in and find information on treatment etc. Have you had surgery as yet? Best wishes to you
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: dianetavegia, Google [Bot], stu, Yahoo [Bot] and 43 guests