Hubby diagnosed 3C adenosquamous colon

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Zig2017
Posts: 34
Joined: Tue Sep 26, 2017 12:26 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby Zig2017 » Wed Nov 08, 2017 6:09 pm

Thank you for this link I will be reading it tonight. Husband had 6 FOLFOX. Last night we found out he is now stage 4. It didn’t work. All it did was make him sick. He now his lymph nodes in mediastinu, abdominal, numerous nodules all over and the lungs are now in question. I was on the phone today with Cancer Centers if America to get a consult and genomic testing to see what will work because this is moving at an alarming rate. I have hope though that they can find drugs that will help. They think outside the box there. I wasn’t really shocked but was shocked at the amount of disease that grew while on FOLFOX and after surgery no less. This is a monster but we are not giving up!
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: 34
Joined: Tue Sep 26, 2017 12:26 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby Zig2017 » Wed Nov 08, 2017 6:36 pm

NHMike you are right. It is V600e variant. God it’s pretty sick when you are getting to the point that your reading pathology reports and understanding a lot of it!
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: 533
Joined: Fri Jul 21, 2017 3:43 am

Re: Hubby diagnosed 3C adenosquamous colon

Postby NHMike » Wed Nov 08, 2017 8:54 pm

I'm sorry that you're going through this. It's what we all worry about happening during treatment. Your husband's case is the first time I've heard about someone with BRAF on this board and the other board that I'm on and that's why I think that Genomic Tumor Testing should be done on all patients when there's a tumor biopsy available as it may change treatment plans and urgency.

Regarding CTCA - I would pick a top cancer center hospital over a for-profit for a second opinion, particularly when my life is at stake. And that's what I did by getting second opinions at Dana Farber and Brigham and Womens. The recommendation to get second opinions at top hospitals is a common one on this board.

Top cancer hospitals:

MD Anderson - Houston
Memorial Sloan Kettering - NYC
Mayo Clinic - Rochester, MN
Dana Farber Cancer Institute/Brigham and Womens - Boston, MA
University of Washington Medical Center - Seattle
John Hopkins - Baltimore, MD
Cleveland Clinic - Cleveland, OH
Penn Presbyterian - Philadelphia, PA
Moffitt Cancer Center - Tampa, FL
UCSF Medical Center - San Francisco, CA
Stanford Hospital - Stanford, CA
Mass General Hospital - Boston, MA
etc.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 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.
Surgery: 10/30/17 LAR, Temp Ileostomy

Zig2017
Posts: 34
Joined: Tue Sep 26, 2017 12:26 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby Zig2017 » Thu Nov 09, 2017 12:21 am

NHMike I'm trying not to drive my husband crazy with the back and forth decisions, and yeah I'm frazzled. I will check the Dana Farber / Brigham & Women's out.
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: 34
Joined: Tue Sep 26, 2017 12:26 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby Zig2017 » Thu Nov 09, 2017 12:28 am

PS - NHMike another reason I'm going nuts is he only had 6 of the Folfox treatments and this mess showed up. So I'm guessing time is of the essence here. Thank you for responding!
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: 533
Joined: Fri Jul 21, 2017 3:43 am

Re: Hubby diagnosed 3C adenosquamous colon

Postby NHMike » Thu Nov 09, 2017 3:35 am

Zig2017 wrote:NHMike I'm trying not to drive my husband crazy with the back and forth decisions, and yeah I'm frazzled. I will check the Dana Farber / Brigham & Women's out.


Zig,

Please believe me when I say that I completely understand that you're frazzled. I think that everyone on this board understands it and has gone through it at one or more points in their journey and this is a place to vent if you need to. Also, please don't choose Dana Farber on my account. I chose them because I'm an hour away and they're a top hospital. I do not know where you are located but there are top hospitals around the country and I would choose something that's logistically manageable.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 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.
Surgery: 10/30/17 LAR, Temp Ileostomy

stu
Posts: 602
Joined: Sat Aug 17, 2013 5:46 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby stu » Thu Nov 09, 2017 3:59 am

Hi ,
Just want to send our support to you and your husband and totally get the whole trying to find a solution in difficult circumstances without it adding more pressure to the situation .

The spread may already have been out there but this particular chemo has done nothing to hold it at bay . My mum had an immediate spread , we reckoned it had already been there but not showing . The chemo did hold hers back but as soon as she stopped it came back quickly .
I am no expert but you sound on the right track getting people to review that are more expert in that field . Someone once suggested doing a google search on research papers to see who is the expert in that field locally then asking them to review or to recommend someone . Just a thought.
Thinking of you too,
Take care,
Court
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

Zig2017
Posts: 34
Joined: Tue Sep 26, 2017 12:26 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby Zig2017 » Thu Nov 09, 2017 6:17 pm

Hi Court that is a great idea! I was thinking of Sloan Kettering in Basking Ridge because getting into the city with tolls, parking, etc is a nightmare. I’ll google experts at Sloan and see what comes up. I’m much calmer today just very concerned. You guys rock. Thank you for being here. This forum in itself is a blessing to those of us newly navigating this.
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: 34
Joined: Tue Sep 26, 2017 12:26 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby Zig2017 » Thu Nov 09, 2017 8:38 pm

Zig and I are going to Sloan. Yes logistically traveling far with a sick husband doesn’t work. Sloan is across the bridge and his cousin is going to find a name for us. By the way if I do get a name I’ll post it in case there are people in the NYC/NJ area. Read the pathology report again today apparent left lung has some sort of “clusters” on it and they recommend follow up. Gorgeous.... sigh. I want to do all I can for this man. I’ve known and loved him many years.
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: 533
Joined: Fri Jul 21, 2017 3:43 am

Re: Hubby diagnosed 3C adenosquamous colon

Postby NHMike » Thu Nov 09, 2017 8:52 pm

Zig2017 wrote:Zig and I are going to Sloan. Yes logistically traveling far with a sick husband doesn’t work. Sloan is across the bridge and his cousin is going to find a name for us. By the way if I do get a name I’ll post it in case there are people in the NYC/NJ area. Read the pathology report again today apparent left lung has some sort of “clusters” on it and they recommend follow up. Gorgeous.... sigh. I want to do all I can for this man. I’ve known and loved him many years.


I'm glad that you have a plan at a top hospital and hoping that they can provide a solution.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 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.
Surgery: 10/30/17 LAR, Temp Ileostomy

Zig2017
Posts: 34
Joined: Tue Sep 26, 2017 12:26 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby Zig2017 » Thu Nov 09, 2017 9:50 pm

Thank you NHMike. Sometimes a nights sleep and a cooler head works wonders. I’m sure they will come up with something. Our local hospital is great, but I need some big boys on board with maybe other options. Sloan’s been doing this a long time. CTCA just gave me a weird feeling.
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: 34
Joined: Tue Sep 26, 2017 12:26 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby Zig2017 » Tue Nov 14, 2017 10:12 pm

Went to Sloan today. What a difference! We spoke to Dr. Yaeger who is heading up a Phase III trial for BRAF mutation. She’s a wonderful oncologist. Mr. Ziggy got on the trial! This is really the best hope for his particular cancer and we are moving his care to Sloan officially. Our local oncologist was so nice, but this is a whole different level of care. She was candid and straight forward. Awesome day! - Mrs. Ziggy
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

User avatar
susie0915
Posts: 425
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Hubby diagnosed 3C adenosquamous colon

Postby susie0915 » Wed Nov 15, 2017 9:08 am

Such good news. It probably feels good to have a real plan that could provide your husband with a positive response to treatment. It pays to get second opinions and go to reputable cancer centers. Especially for the tougher cases. I'm so happy for the two of you.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

Zig2017
Posts: 34
Joined: Tue Sep 26, 2017 12:26 pm

Re: Hubby diagnosed 3C adenosquamous colon

Postby Zig2017 » Wed Nov 15, 2017 10:07 pm

Thank you Susie. Yes this is a tough one and very fast growing. I couldn’t wait for a second line of treatment to not work. They are using drugs in the study that actually shut down signaling pathways. Right where these cancers are signaled to grow. Side affects could be tough, but it’s worth a shot! He can stop at anytime if it becomes too much, but he wants to try. And in Mr. Ziggy’s words “it could help someone else.” He really is an awesome person! Besides as his wife I love him and want to be sure everything is tried for him. He feels the same with way. I told him it’s your body, your decision don’t forget you can always say no! Quality of life is important too. It’s what he feels that’s important in all this.
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

Pat
Posts: 18
Joined: Fri Jan 15, 2016 6:21 pm
Facebook Username: Pat Henderson Sins
Location: Southern California

Re: Hubby diagnosed 3C adenosquamous colon

Postby Pat » Thu Nov 16, 2017 2:32 am

I am checking in after a long absence and saw your post. I also have an aggressive form of CRC. I am two years NED and look forward to many more NED years. Good luck to your husband.
57 yr old. Dx 9/2015, Stage IIIc T4aN2bM0 BRAF/V600e
10/2015 Right Hemicolectomy
High Grade, poorly differentiated Adenocarcinoma of the Hepatic Flexure
25 of 30 lymph nodes cancerous extranodal extension
Barrett's Esophagus
11/2015 Folfox 12 cycles stopped 3x for month each due to low blood counts
7/30/2016 - finally finished Folfox
9/15/2016 - Clear colonoscopy, 1 sessile polyp
9/7/2017 - clear colonoscopy, next due in 3 yrs


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