Wives of husbands with Stage IV Colon Freaking Cancer

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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 » Mon Oct 02, 2017 4:50 pm

Nuts, CEA up to 26 now. Guessing CT scan is next on list and possibly adding back the OX.

Anyone got any GOOD news to share?
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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LPL
Posts: 312
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Wed Oct 04, 2017 5:11 pm

Hi Melissa,
How are You?
I read your posts - More info is better isn't it?
Your appointment Sept 22 sounds as you at least got some answers! and things to follow up.
This CEA test is confusing isn't it? If it goes down we are happy, but is it really bad if it goes up a bit during treatment? I remember reading (is this correct?) that if the test is taken during treatment, a higher CEA can be a good sign? meaning that the tumor is responding to treatment?
My DH's Onc has almost never ordered a CEA during treatment...
I am wishing for you Melissa that the current treatment will be found effective for your hubby.
When is his next CT-Scan?

You asked if anyone had any good news to share?
Yes - I have :)
My DH's CT-Scan on Sept 21 was good and today he had his 1st colonoscopy and they only found a small benign polyp that they removed. We are so happy for this news :D I know my DH was lucky that his liver mets were resectable... but maybe it can give others hope that even stage 4 can get to NED ('for now'.. I enjoy now!). Last surgery for hubby was (liver mets) Sept 1st 2016. Last chemo was Feb 16 2017, the 1st CT Scan I have named as NED (for now) was March 27 2017.
One day at a time... Next check up is Jan 18 2018.

All the best to you Melissa❤️
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

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LPL
Posts: 312
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Mon Nov 06, 2017 6:48 pm

Long time and No posts here.
How is everyone feeling?
Hubby is looking good, exercising (=read walking with our dog) 1 and 1/2 hour each morning, and he is eating a handfull of tree-nuts each day (I think the link to that study is the only one he Thank me for.. he love nuts.)
We both take vitamin D3 and K2 and Calcium, magnesium and probiotic and Lactoferrin daily. Keeping my fingers crossed it is doing us both good.
Thinking about you all <3 Please post and share how you are doing - being a caregiver, with its special worrying, is lonesome at times..
Love
Lena
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

ilovemyfrenchie
Posts: 2
Joined: Fri Nov 03, 2017 9:20 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby ilovemyfrenchie » Tue Nov 07, 2017 1:28 pm

inorganic8 wrote:Hi,

This is my first post here. My husband was diagnosed with stage IV CRC at the end of January. He has mets to the peritoneum wall, the omentum, and maybe the liver. The liver mets seem to be on the surface and may actually be on the peritoneum and just crushed up against the liver. He has started Folfirinox and has had two treatments. He has tolerated them reasonably well. He is being treated at the Moffitt Cancer Center. We have seen two doctors there, one oncologist and one surgeon. His cancer is currently inoperable. The oncologist wrote him off at our first consultation and said the best we could expect with the chemo was 2 to 3 years. The surgeon is more optimistic.

My husband is 42 years old. Other than this cancer thing, he's very healthy. Great blood work, some extra weight, gets a decent amount of exercise. There's hope, right? Will these black balls of anxiety in our stomachs ever let up?

One day at a time... one day at a time... one day at a time...



Hi Inorganic,

New to this board and can’t message you for some reason. My moms story is very similar to your husbands and I don’t know where to turn to for advise. The oncologist is calling it “palliative chemo” but I can’t accept that. We just went along with the local hospital oncologist and was wondering how you like it at Moffitt Cancer Center? The local surgeron says she’s inoperable but we only had one chemo treatment so far so I’m hoping for the next CT scan to be better. Any advice is appreciated!
Daughter to 59 yo w/ Stage 4 Mets to liver & peritoneal
10/1/17 ER trip for GI bleed found rectal tumor
10/2/17 emergency colostomy (no resection, told tumor inoperable due to Mets found)
10/30/17 started Folfiri with Avastin

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 » Tue Nov 07, 2017 8:08 pm

Hello Lena, As noted in sig, OX is being added back next week. 1 cm growth to 3 of the liver tumors and 1 mm growth to several lung nodes and a lymph node since August. So 5FU by itself lasted 5 months.

Last week, DH's bilirubin count was over 2 so onc didn't want to do treatment. Said DH could do blood test this week to check so we did that yesterday and are awaiting results. If everything is OK, he'll have his OX next Tuesday (his regular day) and then his first round of Xeloda.

It's rather nice having another week off from treatment. We're both going to work 4 days this week. Our weather is turning cold (freeze warnings) so that doesn't help his cold feet. Bought a fleece electric throw he cuddles under.

HUGS TO ALL,

Melissa
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 » Wed Nov 08, 2017 6:52 pm

Hi ladies I hope you won’t mind but I just found out yesterday that my husband Ziggy is now stage 4. I could really use the support. I know this is a well established group, but I don’t know too many folks in my situation. I hope you are all doing ok! We both felt like we were punched in the face yesterday. His FOLFOX didn’t do anything for him so now we are on to FOLFIRI Monday. Thanks for “listening”! Just looking for some hope and encouragement.
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 09, 2017 8:06 pm

Mrs. Ziggy, Sending you hugs and prayers. I was in your shoes a year ago and can remember the crying and screaming (mine, not DH).

Is he on Avastin too?

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 » Thu Nov 09, 2017 8:27 pm

Hi yeah he’s getting Avastin and the Irinotecan FOLFIRI on Monday. In the meantime we are going to visit Sloan for a second opinion since his cancer laughed at FOLFOX. Hideous creature that it is... well you know.
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 » Thu Nov 09, 2017 8:31 pm

Hey the CEA vaccine sounds intriguing. Are you guys going to do the Xeloda? I know it’s used in Breast cancer too.
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 » Sat Nov 11, 2017 6:14 pm

Hi Mrs. Ziggy,

Our current oncologist would prefer we not do the CEA vaccine trial (it's at NIH and Georgetown) even tho' it can be done at the same time as FOLFOX. His opinion is we try all current treatments for as long as possible and then check out trials. We've gotten a year on/off FOLFOX and are about to get at least another X months so it's tough to argue with success.

On Tuesday, DH will get his Avastin as usual and then OX and then have his first prescription of go-home Xeloda pills to sub for the 5fu bag. So infusions are now every 3 weeks instead of every 2 and we'll see how that goes. The trip is 75 minutes each way so the reduction in driving is a plus. Now let's see if adding back OX helps...
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 » Mon Nov 13, 2017 10:28 am

I hope the OX works wonders! Three weeks is def better than two if you are traveling with a sick hubby. Please let me know how you make out with Xeloda! I’m wishing the best for you and hubby! We are trying to get into Sloan as there is a doctor there who specializes in BRAF mutation. Waiting for a call back this morning, as it’s an “over-book” appointment. Man I hope we get in. At this point I don’t think our local oncologist can handle this mess right now. All my best to all of you taking care of your loved ones and being so strong!
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
LPL
Posts: 312
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Tue Nov 14, 2017 10:59 pm

Hallo, All caregivers,

I’m sorry for not having been around much lately. It’s due to us trying to live a ”NED for now”/normal... life without tests & appointments. Hubby is actually the one looking healiest in our house at the moment... Some of you might remember that I had an accident with many fractures a year ago and sadly I’m still nog back to myself as I was ’before’. But that I am not posting much does not mean that I do not care about all of you here. I really think about you a lot !!

Dear Melissa, I’m sorry to hear about the tumor growth, that the ”only 5-FU” was not effective. How are you doing? Asking Not only about your DH but You? I hope your DH’s bilirubin test was good and that he got the Ox & Xeloda as planned, and that the treatment scedule now is a little easier. You said it was getting cold - do you get snow also? Here in France we have a little snow some year and other years it is only cold without the snow.
Thinking about Chemo - it does affect people in different ways. DH’s last chemo was in March 2017 and I think it was not until a month ago that he cut his nails for the 1st time after starting chemo. It is also not long ago that he felt the need to again make an appointment to cut his hair. His hair is now darker then before chemo! Odd !!

Welcome to this thread Ilovemyfrenchie - I hope that inorganic8 will see your post and reply.

Welcome also to you Zig2017, I’m keeping my fingers crossed that the change to Folfiri will make a Big difference for you DH. It is hard being a caregiver also and at times feeling the need to look strong when you are scared... I hope your 2nd opinion visit at Sloan was good and that you got reasured that the current treatment plan is also their recommendation or that they had alternatives?

Wishing All of you the best!
/Lena
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Zig2017 » Wed Nov 15, 2017 6:35 am

First I want to say good morning to all of you fabulous women this morning! Mr. Ziggy is now on a clinical trial at Sloan. His Dr. is heading up a Phase III trial for BRAF mutant colon cancer. Her name is Dr. Yaeger. I’m amazed by my first impression of Sloan. Although we will miss his oncologist here at home, this trial right now is the best way to address his at this time. I hope all of you are starting to take care of yourselves also. I’m finding that we really can forget or cancel our own doctor appointments and I know I’m guilty of that! I hope for peace and a calm day for each and every one you. All my love, Mrs. Ziggy xoxo
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

Edrimajo
Posts: 1
Joined: Tue Oct 31, 2017 2:42 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Edrimajo » Wed Nov 15, 2017 10:30 am

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!

inorganic8
Posts: 42
Joined: Mon Feb 27, 2017 6:13 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby inorganic8 » Wed Nov 15, 2017 4:53 pm

IlovemyFrenchie,

I’m not around too often and just saw this in two threads. I think I can help you. Email me. Use my forum name at gmail. You are not alone.
Wife to wonderful man with CRC
Stage IV Diagnosis 1/27/17, Mets to Liver, Omentum, Peri
KRAS Mutation, G12, MSS
Folfirinox 2/8/17, completed 9 rounds
Follow-Up PET 4/13/17 - Very encouraging. Definite shrinkage and 2/3 liver mets resolved.
Follow-Up PET 6/13/17 - Very encouraging. Even more shrinkage.
Folfiri 6/14/17
November Scan - disease progression
Looking for clinical trial


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