Hubby diagnosed 3C adenosquamous colon

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Zig2017
Posts: 59
Joined: Tue Sep 26, 2017 12:26 pm

Hubby diagnosed 3C adenosquamous colon

Postby Zig2017 » Fri Oct 06, 2017 9:21 pm

Long story short. Hubby was emaciated and badly anemic. He went in for emergency surgery in June for blockage and needed two blood transfusions to get through surgery. He has stage 3C baseball size tumor removed. 18 of 19 lymph nodes positive for cancer. He’s doing FOLFOX and handling it fairly well. He’s definitely my hero! Also it’s an unusual type, adenosquamous and poorly differentiated very aggressive. Yikes. Trying to find out as much as I can. Including learning how to use this forum! Thanks for any info or encouragement! I’m really scared for him.
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation

TXLiz
Posts: 228
Joined: Thu Sep 22, 2016 3:31 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby TXLiz » Sat Oct 07, 2017 10:15 am

Hey Zig. Sorry about your husband. I also had an emergency surgery for blockage with a huge tumor, in 2016. I was totally blocked and vomiting every 2 minutes for an entire day until I realized, hey, I don't think this is food poisoning.

I was badly anemic, and did not stop being anemic until 2 months after I completed chemo. I had one blood transfusion after surgery.

It's good he's getting FOLFOX. I am sorry for the aggressive nature of the monster inside your husband.

You are going to be scared out of your mind, I doubt anyone in your situation could not be.

I do not know where your husband is receiving treatment, but it seems pretty standard to try and get a second opinion at a major cancer treatment center...

University of Texas MD Anderson Cancer Center, Houston
Memorial Sloan Kettering Cancer Center, New York City
Mayo Clinic, Rochester, Minnesota
Dana-Farber/Brigham and Women's Cancer Center, Boston
UCLA Medical Center, Los Angeles
Moffitt Cancer Center and Research Institute, Tampa, Florida
Seattle Cancer Care Alliance/University of Washington Medical Center
Cleveland Clinic
Johns Hopkins Hospital, Baltimore
UCSF Medical Center, San Francisco
Massachusetts General Hospital, Boston
Hospitals of the University of Pennsylvania-Penn Presbyterian, Philadelphia
Stanford Health Care-Stanford Hospital, California
Northwestern Memorial Hospital, Chicago
Barnes-Jewish Hospital/Washington University, St Louis
University of North Carolina Hospitals, Chapel Hill
New York–Presbyterian University Hospital of Columbia and Cornell, New York City
USC Norris Cancer Hospital-Keck Medical Center of USC, Los Angeles
Wake Forest Baptist Medical Center, Winston-Salem, North Carolina
City of Hope, Duarte, California

If possible... I know not everyone has the resources and insurance and time and money to travel, etc. If you feel confident in your husband's care, that is good, also. The treatment terms and protocol are all super confusing, on top of dealing with cancer.

Take it day by day and keep as positive as possible. I never would have kept my sanity without this forum and the cancer superstars who post and advise here. Best wishes to you and your family. :wink:
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

Lee
Posts: 5293
Joined: Sun Apr 16, 2006 4:09 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby Lee » Sun Oct 08, 2017 2:02 pm

Hi and welcome, sorry for the reason you are here.

I agree with Liz, do consider a 2nd opinion a major cancer hospital or treatment center. Because it is poorly differentiates, he should be treated aggressively.

Where is he currently being treated at?

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Zig2017
Posts: 59
Joined: Tue Sep 26, 2017 12:26 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby Zig2017 » Sun Oct 08, 2017 7:05 pm

Thank you both for your replies. I really appreciate that. He seems to really like and trust his oncologist. As do I. The irony is his oncologist is in the same office as mine. We are at a local hospital in northern NJ but as you both said I will get a second opinion. Liz thank you for that list! I was thinking maybe Sloan or Cancer Center of America. This place is slow in getting tests results back though. When I had breast cancer 9 years ago I got tests back right away! That’s been my only gripe. And yes I do have private moments when a song or something unrelated will make me cry. And I’m def not a crier! Feel bad this happened to him in the first place.
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation

DarknessEmbraced
Posts: 2849
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Hubby diagnosed 3C adenosquamous colon

Postby DarknessEmbraced » Mon Oct 09, 2017 9:59 am

Welcome and sorry for your husband's diagnosis!*hugs* I'm glad his chemo is going well!*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

Zig2017
Posts: 59
Joined: Tue Sep 26, 2017 12:26 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby Zig2017 » Mon Oct 09, 2017 10:00 pm

Thank you DarknessEmbraced and all who responded. He is on #5 FOLFOX 7 more to go. We went in today and now he's down to 136 lbs. Blood platelets aren't good, but that's to be expected. He didn't have the weight to lose, and his stomach is bothering him. They are going to do scans at the end of the FOLFOX so we'll see. Just feels out of control. Doc says she'll lower his dose if he's no good for next chemo. He already skipped one, which he gets upset about. I try to tell him skipping one because platelets are low isn't so bad - they don't want to make him sick after all. I want a scan to be honest... and a second opinion. Thanks everyone, I really do appreciate all of you and have read some of your posts. You are all inspiring!
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation

Zig2017
Posts: 59
Joined: Tue Sep 26, 2017 12:26 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby Zig2017 » Fri Nov 03, 2017 6:19 am

We just got back gene mutation test. He is microsatellite stable and also has the B-RAF mutation. Waiting on results from his CT scan. From what I’ve read he has a very aggressive cancer which the doctor also had told us. He is not in good spirits right now and concerned about CT results. He finished number 6 of FOLFOX with 6 more to go. His fatigue is pretty bad. Anyone else with this mutation? Any scientists out there?!? Geez my poor husband!
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation

TXLiz
Posts: 228
Joined: Thu Sep 22, 2016 3:31 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby TXLiz » Fri Nov 03, 2017 7:57 pm

Zig2017 wrote:We just got back gene mutation test. He is microsatellite stable and also has the B-RAF mutation. Waiting on results from his CT scan. From what I’ve read he has a very aggressive cancer which the doctor also had told us. He is not in good spirits right now and concerned about CT results. He finished number 6 of FOLFOX with 6 more to go. His fatigue is pretty bad. Anyone else with this mutation? Any scientists out there?!? Geez my poor husband!


I don’t have the mutation your husband does and I don’t know anything about it, sorry.

I know he must be very low in spirits and feeling desolate, as must you. But don’t give up or in. He is doing all he can taking his chemo and pushing on through the fatigue.

I saw a geneticist who explained my cancer type to me, is it possible for your oncologist to refer you to a geneticist?

I know someone here with your husbands mutation will come along, you can also search for it on the forum. Good luck!
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

Zig2017
Posts: 59
Joined: Tue Sep 26, 2017 12:26 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby Zig2017 » Sat Nov 04, 2017 3:23 pm

I definitely want to get a second opinion at Sloan but between doctor appointments and treatments we haven’t gone yet. I did bring it up to my husband but he loves his oncologist and doesn’t want to go right now in middle of treatment. My thought is why not?!? But arguing won’t help. I’ll ask about a geneticist at next chemo appointment. If nothing else it would perhaps give the oncologist new info towards treatment! Thank you for responding. I don’t know enough about colon cancer yet.
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation

teacher2017
Posts: 126
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: Hubby diagnosed 3C adenosquamous colon

Postby teacher2017 » Sun Nov 05, 2017 8:18 am

Ok doom and gloom will get us nowhere. All stage 3s are treated the same. I suggest you read this thread for some hope. Attitude is everything. Keep in mind those people who beat his go on with their lives and don't come back to these forums. viewtopic.php?f=1&t=10574&start=60
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

Zig2017
Posts: 59
Joined: Tue Sep 26, 2017 12:26 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby Zig2017 » Sun Nov 05, 2017 7:04 pm

Im learning about this and it’s kind of new. Sorry if I seem “doom and gloom” just a concerned wife. Thanks for the link.
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation

NHMike
Posts: 676
Joined: Fri Jul 21, 2017 3:43 am

Re: Hubby diagnosed 3C adenosquamous colon

Postby NHMike » Mon Nov 06, 2017 6:18 pm

Zig2017 wrote:Im learning about this and it’s kind of new. Sorry if I seem “doom and gloom” just a concerned wife. Thanks for the link.


I'm KRAS-Mutant and I was curious about BRAF and found this paper. It does indicate that the other forms of CRC have better survival rates than BRAF-Mutant. At least from the perspective of 2015.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4671844/

I could ask my son to read it and tell me what he thinks.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

NHMike
Posts: 676
Joined: Fri Jul 21, 2017 3:43 am

Re: Hubby diagnosed 3C adenosquamous colon

Postby NHMike » Mon Nov 06, 2017 7:52 pm

I asked my son to read that paper and tell me what it means. He told me that BRAF is different from the other major mutations in that it disables a tumor suppressant mechanism in the body. So the other types of cancer are replicating but they are slowed down by the body's tumor suppressant mechanisms(s). I had a look around for targeted therapies for BRAF-Mutant and found that there are targeted therapies and BRAF inhibitors out there but they are usually used for Melonama patients. The BRAF mutation in CRC is about 10% of the total.

I'm not a doctor and this is about the limit of my research capabilities and this is where you should have discussions with your husband's doctors about what kinds of treatments they can offer.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

NHMike
Posts: 676
Joined: Fri Jul 21, 2017 3:43 am

Re: Hubby diagnosed 3C adenosquamous colon

Postby NHMike » Mon Nov 06, 2017 8:06 pm

A bit of a summary of the state of BRAF for CRC, again from 2015:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4562608/
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

NHMike
Posts: 676
Joined: Fri Jul 21, 2017 3:43 am

Re: Hubby diagnosed 3C adenosquamous colon

Postby NHMike » Tue Nov 07, 2017 7:52 am

MGH Targeted Cancer Care page for BRAF:

https://targetedcancercare.massgeneral. ... /BRAF.aspx

I think that the most common variant is V600E which my son mentioned to me, maybe a year or two ago, as something he was working on. I do not know if those statistics are for CRC or all cancers.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).


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