New Here 37 m stage lV

Please feel free to read, share your thoughts, your stories and connect with others!
PaulSmarinecorps
Posts: 19
Joined: Wed Nov 06, 2019 8:51 pm
Facebook Username: Paul Smith

New Here 37 m stage lV

Postby PaulSmarinecorps » Wed Nov 06, 2019 10:13 pm

Hello all! My wife been reading this forum and going crazy doing so for months and I finally gave in and looked! I am 37 years young 3 kids 14,13 and 2! Wife of almost 15 years at my side most days! Little history may 14th 2019 wake up from colonoscopy with cancer scans and 2 days later stage 4 with liver met. 6 cycles of folfox then 1 week radiation for 1 week and then surgery. September 19th Wake up with a stoma and thought cancer free. Pathology reports came back and positive margin and 4 of 9 lymph active. Now on 6 more cycles of folfox and then onto another surgery to remove all and be put on a permanent colostomy. Anyone in the same boat or can relate?
37 yo male diagnosed 5-14-19
Adenacarcinoma
Stage 4 with liver met
6 rounds folfox
9-19 liver abl
9-19 lar surgery
10-19 positive margins
6 more rounds folfox

User avatar
ANDRETEXAS
Posts: 662
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: New Here 37 m stage lV

Postby ANDRETEXAS » Wed Nov 06, 2019 11:57 pm

Not in the same boat. But I want to ask you to stay positive ! I know it's difficult at times, but you've got to do it and can. It sounds like you and your doctors have a great plan, so hang in there ! Andre
2/10/14 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT

3/2/15 - Clean colonoscopy & port removed
3/4 - clean CT
9/21- clean CT

3/23/16 - clean CT

2/22/17- clean CT

3/21/18 - clean CT
4/1 - clean colonoscopy

3/11/19 - clean CT
9/23 - Five-year release - Annual visits now !

4/13/23 - clean colonoscopy

ONE DAY AT A TIME !

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: New Here 37 m stage lV

Postby claudine » Thu Nov 07, 2019 11:02 am

Different boat too... Welcome, hopefully you can find support here like many of us do!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: New Here 37 m stage lV

Postby Gravelyguy » Thu Nov 07, 2019 2:01 pm

Welcome,

A little bit different boat but pretty similar. I am older but still have my youngest at home who is almost 13. I had similar surgery but only 1 lymph node and they were able to get it all the first time.

Sorry about the permanent colostomy but in the end it might be easier than dealing with the after effects of LAR surgery. I went into the surgery thinking I would have a colostomy so was surprised when all I had was an ileostomy. There is a big learning curve once everything is reattached and many deal with a lot of issues.


Hang in there you can do this!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

PaulSmarinecorps
Posts: 19
Joined: Wed Nov 06, 2019 8:51 pm
Facebook Username: Paul Smith

Re: New Here 37 m stage lV

Postby PaulSmarinecorps » Thu Nov 07, 2019 2:52 pm

Thanks for the kind words! I should have really paid attention to all this talk from the drs and stuff I feel so nieve to everything. I have relied on my wife who is only 33 and a nurse to take in and know everything going on with me. Just got phone call from my primary surgeon and treatment plan head and my MRI I had last Monday shows they burned the liver completely and no signs of cancer, now to finish this cycle of FOLFOX which is only getting harder!
37 yo male diagnosed 5-14-19
Adenacarcinoma
Stage 4 with liver met
6 rounds folfox
9-19 liver abl
9-19 lar surgery
10-19 positive margins
6 more rounds folfox

User avatar
Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: New Here 37 m stage lV

Postby Jacques » Thu Nov 07, 2019 4:14 pm

I notice that there's an organization in Virginia that may have something of interest to you.
https://www.mclnational.org/

It looks like they have a branch concerned with providing support for servicemen and caregivers. Maybe you and your wife could look into this to see if there are any relevant support options in your particular geographical area:

https://www.vets4warriors.com/

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: New Here 37 m stage lV

Postby boxhill » Thu Nov 07, 2019 7:09 pm

I can understand your leaning on your wife for medical stuff, after all, she's the professional! :) When I married my husband, a finance professional, I admit I kind of stepped back from all of that stuff and let him take the lead in that area. At the same time, as a cancer patient it really is good to know as much as you can so that you can be empowered and an active decision maker and partner in your treatment.

You could start by creating a signature here that describes your history. I guess, since you have had radiation, that it is safe to assume that you have rectal cancer? Do you know your TNM status, your genetic information? (KRAS, BRAF, MSS/MSI, etc) If you look at the sigs of some of the other rectal cancer folks here, you will see what might be included.

Best to you and yours! :D
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

User avatar
Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: New Here 37 m stage lV

Postby Jacques » Thu Nov 07, 2019 10:45 pm

boxhill wrote:... At the same time, as a cancer patient it really is good to know as much as you can so that you can be empowered and an active decision maker and partner in your treatment.

You could start by creating a signature here that describes your history. I guess, since you have had radiation, that it is safe to assume that you have rectal cancer? Do you know your TNM status, your genetic information? (KRAS, BRAF, MSS/MSI, etc) If you look at the sigs of some of the other rectal cancer folks here, you will see what might be included.

Best to you and yours! :D


User avatar
ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: New Here 37 m stage lV

Postby ginabeewell » Sat Nov 09, 2019 9:54 pm

Just wanted to wish you a warm welcome. And confirm, like others have, that it’s not so unusual for a caretaker to take the lead when it comes to treatment, etc. Especially given a wife who is a nurse!

My husband is an art director of all things - he works in advertising and we always joke that I handle logistics. But man, once I got diagnosed he was reading everything he could, and talking with doctors about the sigmoid colon and all sorts of other stuff that was totally new to us! To this day, he watches my labs like a hawk, and I feel very lucky to have a caretaker who is so invested.

How many more FOLFOX cycles do you have? I feel like after round 7 or 8 they started to get a bit easier for me. I hope that will be true for you, too!
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

Rock_Robster
Posts: 1028
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: New Here 37 m stage lV

Postby Rock_Robster » Sat Nov 09, 2019 10:56 pm

Hey Paul, also a 37 yo male here so just wanted to say g’day. History’s in the signature; feel free to shoot any questions.

Cheers
Rob
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

Re: New Here 37 m stage lV

Postby Siti » Sun Nov 10, 2019 4:17 am

Hello, sorry you find you here. Just wanted to say this forum has been my best discovery. I just turned 37, and I’m the only and primary caregiver to my husband.

I do all the reading, researching, cooking, caring, and keep track of medical records, organising hospital visits (he has been treated in 3 hospitals in 2 countries), etc. I told my husband to focus on recovery and going through chemo so that I can do all the other stuff to make it easier for him.

We’re expats and don’t have any family / little friends around us, I found this forum to be a great support group. If you / wife wish to DM me, I’m happy to chat :)

Take care and wishing you a good road to recovery.

Hang in there!
Siti
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

MetastaticEquilibria
Posts: 74
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: New Here 37 m stage lV

Postby MetastaticEquilibria » Sun Nov 10, 2019 7:47 am

Hi Paul,

Welcome to the club. Wish none of us were in it.

It is great you have a medical professional in the house. Neither my wife nor I are, so it has been a lot of catching up for us.

There is also a lot of experience on this board from the patient’s/caregiver’s side, which is great to tap into.
M55 Stage 4 Japan
12/16 Tumor rect/sig jct
1/17 Resect T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10-11/19 Lonsurf+Avastin, new liver met
12/19 HAI (via port not pump)
CEA 1.4-223 now 96
CA19-9 2.8-258 now 258
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: New Here 37 m stage lV

Postby Mohrfamily » Sun Nov 10, 2019 4:26 pm

Safe to say no one has the "same boat" here, but there is a ton of great inspiration, support, guidance and so much more positive things to find on here.

Best of luck on your journey!
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI


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



Who is online

Users browsing this forum: No registered users and 269 guests