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

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

Postby lovemyameliasky » Wed May 09, 2018 11:23 am

Has anyone heard of any recent long-term successes in treating colon cancer metastasized to the spine? If so, what treatment course was pursued? I've spent most of the morning looking at recent studies and haven't yet seen any stories of survival beyond a few months. It seems that the spinal mets are the most immediately dire ones that I have. I'm just looking for a bit of hope!

Achilles Torn
Posts: 102
Joined: Fri Dec 16, 2016 2:41 pm

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

Postby Achilles Torn » Wed May 09, 2018 1:19 pm

My co-worker's wife was diagnosed about 8 months ago with Lung Cancer that had spread extensively to her brain, spine, femurs and more. She had targeted radiation for the brain mets and was placed on a targeted therapy for one of her mutations. She has been doing very well since starting the treatment which has been shrinking all her tumors.

You are new to this and that means that there are still many possibilities that are not yet closed to you. As has already been mentioned, If you have MSI or a high tumor mutational load, currently approved immunotherapy may work, and it can sometimes work wonders.

There is always reason to hope.

AT
40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

User avatar
dianetavegia
Posts: 2675
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
Contact:

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

Postby dianetavegia » Wed May 09, 2018 3:57 pm

This is just heartbreaking. In 9 years, I've never heard of anyone with so much spread.
My prayers will be for you to find comfort and pain control and that whomever you choose to treat you is honest and allows you to choose what to do.

Diane
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Nine years 6 months since my original dx and Six years post liver resection.
NED April 2018!
“O Lord my God, I cried out to You, And You healed me.”
Psalms 30:2

User avatar
dianetavegia
Posts: 2675
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
Contact:

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

Postby dianetavegia » Wed May 09, 2018 4:01 pm

BTW, I'm not sure which side of Atlanta you're on, but I'm in Villa Rica and if you're near and need help in anyway, please let me know. As well as a Stage IV survivor, I'm a trained and certified Cancer Care Minister.

Diane
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Nine years 6 months since my original dx and Six years post liver resection.
NED April 2018!
“O Lord my God, I cried out to You, And You healed me.”
Psalms 30:2

LLVV
Posts: 187
Joined: Thu Aug 19, 2010 8:30 pm

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

Postby LLVV » Wed May 09, 2018 5:09 pm

I’m very sorry that you are in this situation. I haven’t posted on this board in years but your situation is very similar to my dad’s at diagnosis. His cancer was found due to a severe backache that would not go away. At diagnosis, his mets were extensive and in most of the same places that yours are. The best suggestions that I can offer are: go to the BEST cancer hospital that you possibly can and be sure to get any pain you have under control and try your best to keep it under control to avoid a pain crisis. His palliative oncologist told him that pain control is the most important thing because it becomes difficult to treat the cancer when pain becomes so significant that it interferes with treatment.

mariane
Posts: 620
Joined: Sun Sep 13, 2015 6:16 pm

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

Postby mariane » Wed May 09, 2018 11:03 pm

I will try to answer a few of your questions. I signed consent form for palliative treat almost 3 years ago and i am still doing good. You must have had a biopsy during your diagnostic colonoscopy. The pathology report of the tissue should provide the info about mutations, MSI/MSS status. Check whatever you received.
Did your gastroenterologist/oncologist suggested any treatment? There are several options. Ask him about the pathology and mutation status?
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!

boxhill
Posts: 90
Joined: Fri Apr 06, 2018 11:40 am

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

Postby boxhill » Thu May 10, 2018 6:47 am

I am a new member here, and just started FOLFOX last week (emergency surgery on 3/17 due to blockage resulting in stage IV diagnosis), so I have no real experience to share, except for the fact that it took me 3 weeks longer than I had hoped to get the consult at Dana Farber that my oncologist recommended before starting chemo. I got that appointment by saying, after over a week with no word, that I would see anyone, not just the woman my doctor chose (based on the fact that I generally prefer to see female doctors). The doctor I saw was fantastic. I think that at level they probably all are. I don't think you want to sit around patiently waiting for someone to see you. If I were in your shoes, I think I would demand that my local oncologist IMMEDIATELY refer me to all of the top 5+ cancer centers simultaneously, starting with MD Anderson, and I would go with whoever was able to see me first. It sounds as if your local people would be supportive.

Just sitting and waiting can drive you crazy, IME.

Best of luck to you, and a big hug and smooch to your little girl.
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, mut KRAS, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

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

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

Postby aja1121 » Thu May 10, 2018 11:26 am

lovemyameliasky You must be worried sick. Believe it or not, you'll probably feel a little better once you have a plan.

Have your doctors been able to give you ANY information yet about your tumor?

How are they addressing your pain?
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)

Lydia666
Posts: 661
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

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

Postby Lydia666 » Tue May 15, 2018 9:48 pm

Hi Amelia's mama, i know this is an insane time, out of this world but there is hope. Once you start treatment, you will feel much better physically and emotionally. I know someone with significannt spread and who is still here 7 years later.

Big hug xx
Oct 2012- thyroid cancer
June 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
May 2016- clear CT
July 2016- ileo reversal
August 2016- DCIS breast cancer
Oct 13,2016 - lumpectomy
Dec 2016 - clean scope
Feb 24,2017- prophylactic double mastectomy
April 2017- clean scope
May 2017 -clean CT
Sept 2017 - clean lung CT
May 2018 - clean CT
Mom to 3 & 6 yrs kids

DarknessEmbraced
Posts: 3085
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

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

Postby DarknessEmbraced » Wed May 16, 2018 8:44 am

Welcome to the group and I'm sorry you're going through so much!*hugs* I hope that your treatment goes well!*hugs* I'm glad you can go to a major cancer center!*hugs*
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


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



Who is online

Users browsing this forum: Google [Bot], Yahoo [Bot] and 52 guests