New Here 37 m stage lV

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PaulSmarinecorps
Posts: 3
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?

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ANDRETEXAS
Posts: 625
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
2014
2/10 - 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
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

Claudine
Posts: 173
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 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now at 5.0 (twice)
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

Gravelyguy
Posts: 251
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 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

PaulSmarinecorps
Posts: 3
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!

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Jacques
Posts: 536
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: 392
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 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

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Jacques
Posts: 536
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


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ginabeewell
Posts: 360
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!
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

Rock_Robster
Posts: 380
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, 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
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

Siti
Posts: 80
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
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

MetastaticEquilibria
Posts: 59
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 rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
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
10/19-now Lonsurf+Avastin
CEA 1.4-223 last 2: 130 74
CA19-9 2.8-232 last 2: 232 96
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Mohrfamily
Posts: 188
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 no surprises in surgery


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