Wives of husbands with Stage IV Colon Freaking Cancer

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Robino1
Posts: 227
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Robino1 » Wed Nov 15, 2017 5:13 pm

Edrimajo wrote:Hello all, This is my first post and I’m not sure how to start. I just started to cry. Again. Ok, the wave has gone. Now, I want to ask a question. My husband was diagnosed stage 4 in July with large (9cm) and small mets to the liver and some small mets in the peritoneal cavity. He did 6 rounds of folfiri but no avastin as the main tumor in his colon was almost totally blocking his intestine. After 5 rounds a CAT scan showed that his colon tumor was shrinking but not the liver mets. So, on to Folfiri with Avastin for 1 round. Now we’be been to a liver surgeon who has recommended for him to continue with folfiri and Avastin and to add oxaliplatin, so folfiriox I think it’s called. My question is have any of your husbands taken this mix and if so, how did they do or how are they doing?
I am so happy to have found this chat - my husband hás insisted on keeping his cancer private, only our siblings and children know and sometimes it’s hard not to have someone to talk to although I do understand and support why he wants to keep this private!
Thank you for your support, it means a lot!



I am on FOLFOX + Avastin. It is working marvelously well on melting my tumor and getting rid of a lot of the seeding that happened. See my signature for my story.

I will be getting another scan after Thanksgiving. I am hopeful that there is more good news. :) I may have to lower the Oxaliplatin again. Some side effects are starting to make their presence known. I will be talking to the oncologist tomorrow about them.

I am looking forward to Thanksgiving and getting away for about 10 days :D
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

lkub
Posts: 8
Joined: Mon Mar 14, 2016 12:14 am

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby lkub » Thu Nov 16, 2017 12:46 am

I've been reading your stories and I thought I'd introduce myself. My DH is 43 and has had a recurrence. Rectal ca now metastatic. He just started this week on FOLFIRI and will begin Erbitux on Monday. Onc and surgeon agree that he is inoperable at this time. Mets are too numerous and connected to aorta. One is pushing on ureter so his kidney is full of fluid. Stent is the plan if it gets worse. We are hoping that the chemo shrinks them and takes pressure off the ureter - he has a lot of pain. We are discussing medical marijuana for pain/sleep/nausea/appetite. We live in California where it is legal. Our kids are 9 and 11 and they know daddy's cancer is back and he is having chemo again. They don't know it's incurable. They had a hard time during the last battle, as he lost a lot of weight and spent a couple weeks in the hospital with an ng tube and on tpn. I am sad that we won't be growing old together. I am also realistic and coming to a point of acceptance. I will support him in this fight, and I will support him if he decides that he'd rather feel well for his remaining time. Thankfully, we are not at that crossroads right now. He will have a CT in ~6 weeks to see if this chemo is effective. He is working at the office and at home - he has been with his company for 18 years and they are supportive. He is also being more open about it at work this time. He doesn't want to lose his health coverage or life insurance. I am subbing, but not looking for a full-time teaching job yet (I've been blessed to stay home for the past 11 years) because I would not be able to go to chemo with him. My friend with stage 4 appendiceal cancer has a lot of good advice for us. She suggested I don't worry about finding a job until I need to. She suggested we get the uncomfortable stuff like an advance directive and financial planning out of the way now so that we can just live and put those things aside. I love him so much, but as odd as this sounds, I can imagine going on without him. I've had to. We will survive. His poor body has already been through so much, and I dread what is to come. I feel guilty when I just want him to either be healed or just go. I don't want him to suffer. My heart and mind are conflicted right now. He wants to be a formative influence on our kids for as long as he can. I want that too. He is an amazing dad. So, if this chemo fails we will look for a trial but from what I have researched, his signet ring cell status and the location of tumors make him ineligible for HIPEC and most trials.
DH-stage 3b rectal dx 11/15 age 41
rad/xeloda 12/15-1/16
total colectomy&ileo (jpouch created) 3/16
4/16 CEA 0.6
oxaliplatin&xeloda 3/16-8/16
clean CT 9/16 NED
10/16 ileo reversal
4/17 CEA 1.4
10/17 CEA 44.4!
10/17 CT shows mets to lymph nodes, peritoneum and pelvis-stage 4
10/17 biopsy confirms recurrence rectal signet cell adenocarcinoma KRAS/BRAF/NRAS wild
11/17 port install
11/17 FOLFIRI + Erbitux

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Zig2017 » Thu Nov 16, 2017 1:34 pm

Hi ikub
My husband has an aggressive cancer that spread on FOLFOX. However we didn’t want to wait for second line treatment to fail, so we took him to Sloan. Try to research doctors that specialize in his particular cancer on google. I ended up at Sloan because our local hospital didnt even mention any clinical trials. Plus it’s depressing when your oncologist comes in looking sad in the face. I wanted someone who at least would give him a shot. I know our circumstances are a little different, but it never hurts to look around.
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

mhf1986
Posts: 69
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Thu Nov 16, 2017 7:27 pm

ikub,

Totally talk to other oncologists! The first 2 we talked to basically wrote DH off. The 3rd one has given us a year on only FOLFOX with a real possibility of a couple more...who knows what treatments will come up in that time. The 4th one was just a consult but gave us the idea of a CEA vaccine, potential future ideas, and confirmed the 3rd's treatment plan.

I don't know if it will help in your case, but look at protein and albumin count in the blood work. DH had terrible leg swelling (to the point of barely being able to walk) after surgery last year. And 2 lungs full of fluid, which were drained. Once he got home and was able to eat, I fed him lots and lots of protein to help strengthen the cell walls so they didn't release that fluid. G2 shakes were his favorite (various flavors in orange bottle made by Gatorade). Some of the protein bars aren't terrible. Make hot chocolate with whole milk and add extra milk powder. Cheese as snacks, not junk. Read labels at the grocery...you will be surprised.

I'm not a scientist or a doctor, but I try to keep him as healthy as possible so we can continue to move forward.

HUGS to you and Mrs. Ziggy and Lena and Sarah (where are you??) and all,
M
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX + Avastin started
4/17: CEA 11
6/17: CEA 15, OX discontinued due to neuropathy
11/17: CEA 38, CAPOX
12/17: CEA 31

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Zig2017 » Fri Nov 17, 2017 1:24 pm

MHF and all you awesome ladies good afternoon! It’s funny you mention protein MHF because Mr. Ziggy seems to gravitate to that as opposed to carbs. Won’t even eat mashed potatoes! I’m going to get some nice cheese for snacks, he’ll eat that. And the drink. I hope all of you are finding solutions. Sometimes it takes several different opinions but if you feel your oncologist is unwilling and you want to explore other treatments go for it! Just got back from Sloan will find out today which arm of the trial Mr. Ziggy is going to get. City was a zoo today! Be well ladies!
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: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Zig2017 » Fri Nov 17, 2017 4:54 pm

Alright let me preface this with I’m reading blood lab reports done on my husband today at Sloan. I will type them out EXACTLY as they are on the screen. These are NOT typos.

CEA 1,807.7 ng/mL normal is 0.0-5.0 = (WTF?)
CA-19-9 (wait for it....) 132,458 U/mL = (Triple WTF?????)
Normal is 0-40.
ALT is 39 U/L (that’s ok just a smidge high normal 5-37)
AST is 124 U/L - normal is 10-37 (they say he is now ineligible for trial because of this number, but will re-test Tuesday when he goes in). I have a call in. He’s been taking Prilosec past few days. Ok grasping at straws here.

That’s got to be a typo on the CA 19-9 right????
Over the summer after surgery and before chemo he was 3,100. Look, I know he’s metastatic, but is that number even possible??

Ok I really shouldn’t look at his patient portal but he doesnt read ANYTHING on himself. Mr. Ziggy is upset about being ineligible for the clinical trial he’s beside himself....
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

mhf1986
Posts: 69
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Fri Nov 17, 2017 5:22 pm

Mrs. Ziggy...Google is often not our friend but Mayo Clinic website indicates the following (along with liver cancer/disease/Hepatitis) can cause elevated AST. (DH's has been off the charts.)

Over-the-counter pain medications, particularly acetaminophen (Tylenol, others)

Certain prescription medications, including statin drugs used to control cholesterol

Drinking alcohol

hugs and prayers!

M
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX + Avastin started
4/17: CEA 11
6/17: CEA 15, OX discontinued due to neuropathy
11/17: CEA 38, CAPOX
12/17: CEA 31

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Zig2017 » Fri Nov 17, 2017 6:30 pm

Thanks, MHF! He doesn't drink or take pain meds, but I'm hoping if he lays off the Prilosec and just eats normally (with water intake) hopefully it will come down. I know he doesn't have liver disease so I'm hoping it comes down over the weekend. xoxoxo I'd hate for him to be kicked off for that!
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

mrshillsey
Posts: 4
Joined: Sat Oct 14, 2017 8:54 am

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mrshillsey » Sat Nov 18, 2017 10:32 am

Hi all, I wish I wasn’t meeting you all under these circumstances but here we are....

After seeing our GP with pain in his ribs, and subsequent blood test showing abornamal liver function, a bunch of scans and tests lead to my 44yo husband Baz being diagnosed with adenocarcinoma on 21 August 2017. PET scan confirmed stage IV and inoperable with numerous mets to liver and bones on 24 August.

He’s had 5 rounds of Folfox and 4 with Avastin, with two of his large (10.5cm amd 8cm) liver mets showing shrinkage 20%, some smaller mets unchanged and no new growth. Some bone lesions look to have evidence of healing. So that’s positive.

However a brachial port inserted was used once then became infected and he is now in his fourth week of trying to clear that up, and stalled chemo.

So a crazy rollercoaster where nothing goes to plan. Ever!

We are very lucky to have wonderful family and friends supporting us, and our children ages 12 and 10.

But to be frank, I am angry, frustrated and just so stunned to find us facing this. He’s so strong but this disease has brought him to his knees already. We recently found out that his initial prognosis was mere weeks but even having great results so far makes it hard to keep positive knowing what he is fighting against.

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Zig2017 » Sat Nov 18, 2017 11:07 pm

Hi Mrs Hillary,
I’m so sorry you have to go through all of this and with two children. It’s always a shock when you first here those words and then before you can even absorb what’s happened, there’s the doctors appointments and everything else. You can only get through it one day at a time. I’m glad you have a support system. As things go along and we deal with each problem that comes up, and treatments are in place, it helps. Just want to welcome you here and if you need to vent or just talk please know we are here for you. My husband was diagnosed in June, so I’m aware of the uncertainty. I’m praying for the best for you and your husband, and sending lots of hugs your way! - 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

mhf1986
Posts: 69
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Sun Nov 19, 2017 2:39 pm

Mrs Hillsey, tuck DH under his blanket for a nap and TV football, send the kids to grandma, and then have a good cry in the shower. Or, a good pound the floor in the garage or at a neighbor's. If you try to hold back, it might come out at a weird time. I told a friend of mine I did this at least once a week after diagnosis last year and she laughed and said yeah, she did the same thing. It's also OK to get a second treatment opinion.

M
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX + Avastin started
4/17: CEA 11
6/17: CEA 15, OX discontinued due to neuropathy
11/17: CEA 38, CAPOX
12/17: CEA 31

Lee
Posts: 5297
Joined: Sun Apr 16, 2006 4:09 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Lee » Sun Nov 19, 2017 3:13 pm

mrshillsey wrote:Hi all, I wish I wasn’t meeting you all under these circumstances but here we are....

After seeing our GP with pain in his ribs, and subsequent blood test showing abornamal liver function, a bunch of scans and tests lead to my 44yo husband Baz being diagnosed with adenocarcinoma on 21 August 2017. PET scan confirmed stage IV and inoperable with numerous mets to liver and bones on 24 August.

He’s had 5 rounds of Folfox and 4 with Avastin, with two of his large (10.5cm amd 8cm) liver mets showing shrinkage 20%, some smaller mets unchanged and no new growth. Some bone lesions look to have evidence of healing. So that’s positive.

However a brachial port inserted was used once then became infected and he is now in his fourth week of trying to clear that up, and stalled chemo.

So a crazy rollercoaster where nothing goes to plan. Ever!

We are very lucky to have wonderful family and friends supporting us, and our children ages 12 and 10.

But to be frank, I am angry, frustrated and just so stunned to find us facing this. He’s so strong but this disease has brought him to his knees already. We recently found out that his initial prognosis was mere weeks but even having great results so far makes it hard to keep positive knowing what he is fighting against.


I am so sorry for what you and your husband are going through. I was 46 when I was diagnosed. Not sure where you are, butt please consider getting 2nd opinions from a few major cancer treatment centers or hospitals. Sloan Kettering Memorial in New York City has has success with liver mets (Dr Kemny and team). Are they treating his bone mets? Other than chemo? Radiation can help there.

You have come to the right place for information and support. Feel free to vent here on this forum anytime. We really do get it here.

If your husbands has siblings, they too should also be scoped.

All the best to you and your family,

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!

mrshillsey
Posts: 4
Joined: Sat Oct 14, 2017 8:54 am

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mrshillsey » Thu Nov 23, 2017 7:29 am

Thank you all for replying.

We are in Perth, Australia and being treated at a major centre so we are feeling like he is in good hands. His brother lives in Denver CO and is booked for his colonoscopy as you suggest Lee.

M- I do cry a bit and try to make sure its not in front of the kids! We also talk and cry together at 3am often! I also take a boxing class each week to burn off some anger!

Thnaks for your kind thiughts about our kids Mrs Ziggy, they are coping ok so far but its a long road yet to travel.

Chemo has resumed this week which is a relief (never thought we would say that!) as the two weeks break to try and stall the infection has resulted in increased pain and liver symptoms so the Oncologist wouldn’t wait any longer.

Thanks again xxx

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Zig2017 » Thu Nov 23, 2017 1:26 pm

Mrs. Hillsey, I'm glad you are at a major cancer center, it really does help. Our local hospital really couldn't handle Mr. Ziggy, and it's good to have expert care under one roof. I'm wishing you all the best - and yes, being up at 3 am is all too familiar. We have to take it one day at a time, and sometimes I do panic. It's like watching a slow train wreck at times, and then things settle down. I hope your husband does well! I think what gets me nervous most of the time is the side affects. Don't know about you, but my husband isn't always forthcoming when things are "going on". LIke yesterday I find out he hasn't had #2 since Monday! Ugh...

I hope all you wonderful people have a wonderful weekend with your loved ones.

All my best,
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

mhf1986
Posts: 69
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Sun Nov 26, 2017 2:55 pm

Xeloda update: no side effects until this weekend, 11 days into the 14 day cycle. Same hand/foot syndrome he had with the 5FU pump. Not horrible, but noticeable redness and tenderness.
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX + Avastin started
4/17: CEA 11
6/17: CEA 15, OX discontinued due to neuropathy
11/17: CEA 38, CAPOX
12/17: CEA 31


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