Wives of husbands with Stage IV Colon Freaking Cancer

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SarahS
Posts: 44
Joined: Sat Mar 11, 2017 12:44 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby SarahS » Wed Jun 14, 2017 8:17 pm

Best wishes Lena,

All the very best positive vibes coming your way :D
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras mutant MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

inorganic8
Posts: 41
Joined: Mon Feb 27, 2017 6:13 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby inorganic8 » Thu Jun 15, 2017 9:34 am

"Don't nobody bring me no bad news..."
-The Wicked Witch of the West (The Wiz)

You are both in my prayers Lena. Hang in there. DH and I got really good news from our scan yesterday. I hope that positive vibe multiplies and includes you and our DH. (More details later, right now, let's focus on you.)
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
Follow-Up PET 9/13/17 - Stable Disease

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LPL
Posts: 300
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Thu Jun 15, 2017 11:11 am

Thank you, jhocno197, Sarah & Kim
for your "No bad news" vibes and prayers.
It worked :!: They did not find anything bad on the ultrasound and hubby was told "vacation" again until next check up in 3 month. We are both very Happy :D :D and will now start packning for our trip to be at our daughter's wedding.

Kim, Please share your good news! :D

Again Thank You all !
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

SarahS
Posts: 44
Joined: Sat Mar 11, 2017 12:44 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby SarahS » Thu Jun 15, 2017 12:35 pm

That's fantastic news Lena

Here's to many more good scans

Enjoy that wedding :)
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras mutant MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

inorganic8
Posts: 41
Joined: Mon Feb 27, 2017 6:13 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby inorganic8 » Thu Jun 15, 2017 1:48 pm

Let's hope this is the start of a tidal wave of good news for everyone.

DH had a PET scan on Tuesday. The cancer is continuing to retreat under the onslaught of Folfirinox. There was as much, if not more reduction between April and June as there was between February and April. I think we're getting closer to resectable and maybe HIPEC. He's had nine total cycles of Folfirinox. Our onc is removing the Oxiliplatin due to neuropathy, so he had just the Folfiri this week. I really don't see that setting us back any, but two more months and we'll get another scan. We are definitely headed in the right direction.

Lena, enjoy the wedding. I hope your daughter is marrying a wonderful person who will be a positive addition to your family.

Sarah, I believe I read earlier, up-thread, that the MSK visit didn't turn out quite how you'd hoped. I too built up huge and unrealistic expectations for our Wake Forrest visit, so I understand feeling let down. I hope you still got good info and that you can see the positives from the trip now that you've had some time to digest it.

Melissa, what's going on with you?

jhonco197 and ronswife, keep hanging in there. We are here for you, sisters.

-Kim
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
Follow-Up PET 9/13/17 - Stable Disease

User avatar
LPL
Posts: 300
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Thu Jun 15, 2017 2:21 pm

Inorganic8/Kim wrote:
Let's hope this is the start of a tidal wave of good news for everyone.

Yes yes Please I hope so !!!
Wonderful to hear your positive news :D
and I hope it will continue and give yet another great scan in 2 months time.

Now I really need to start packing :!:
We are leaving tomorrow morning.
Hugs
Lena
Last edited by LPL on Sat Jul 08, 2017 6:51 pm, edited 1 time in total.
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

SarahS
Posts: 44
Joined: Sat Mar 11, 2017 12:44 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby SarahS » Mon Jun 19, 2017 2:45 pm

Kim- I have been meaning to respond to your last post for days now, but I am sure you know how it is when you are dealing with a loved one with cancer, nothing quite goes as planned

Yes , I don't know exactly what I was expecting at MSK, maybe that the doc would bring a bottle of the shelf and say, "we have the cure for your specific cancer right here" or something daft like that.
I was disappointed at the time, but as you say in retrospect it was a positive experience becasue the doctor we saw there just confirmed that what my husband is doing is working and is the right path to take for now.
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras mutant MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

mhf1986
Posts: 62
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Wed Jun 21, 2017 7:53 pm

Lena, SO happy for you! Go buy some new dancing shoes and have a wonderful time at the wedding.

Sarah, sorry MSK wasn't what you needed. Sending you some prayers that you will find the answers you seek.

DH continues chemo. Almost didn't last week as neutrophils were down to .9 during the blood test Friday morning but had increased to 1.1 Tuesday morning during doctor meeting (hospital is 75 minutes away so we usually do testing elsewhere; obviously didn't work this time as it was too early). CEA back down to 12. Doc was not excited to discuss spheres or proton so after CT scan in late July or early August we are going to talk to a specialist in that area. Interested in reducing tumor burden in liver as much as we can.

Hugs to all, M
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX started, Avastin added 12/16
4/17: CEA 11, blood pressure medicine added
6/17: CEA 15, OX discontinued due to neuropathy, Vit D added
11/17: CEA 38, back on OX due to liver tumors' growth, switching to Xeloda too

justbreathe
Posts: 4
Joined: Thu Jun 22, 2017 10:01 am

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby justbreathe » Thu Jun 22, 2017 10:49 am

My husband was diagnosed June 2016 with Stage IV CRC with mets in lung and liver. He saw a Radiologist and a Surgeon and they seemed to think if the tumor would shrink the surgeon would be able to remove the main tumor. The oncologist said his cancer was treatable, not curable and their wouldn't be any surgery. I asked what kind of time frame he had if he wasn't treated and the doctor said about three months. That answer was not acceptable since my husband didn't want any part of chemo so I set up an appointment with another doctor for a second opinion. The diagnosis was the same (except the time frame) and he talked my husband into chemo. After 12 rounds of 5-FU the tumors in his lungs and liver were shrinking. The Oncologist is still not optimistic about surgery since there are still spots in the lung and liver but they have decided to do a combination of radiation and Xeloda to give him some relief from the bleeding and the symptoms that come with it. The main tumor in his rectom has doubled in size but there is no blockage.
My husband is 52 years old and I feel like I'm watching him slip away. I feel like we are going through the motions of everyday life but not getting anywhere. We are still standing in the first doctors office with the initial diagnosis. Other than the cancer my husband is this big strong opinionated guy that just wants to get back to his life.
I try not to let him see me get discouraged and I keep looking for another direction but keep hitting walls. How do I help him and keep my sanity? I'm not one for joining forums and talking to strangers but I could use some advice.
DH @ 52
DX: 6/21/ 2016
Stage IV RC Lower rectum
Mets in lung and liver
Inoperable
Chemo 12 rounds 11/14/2016 - 05/17/2017 (shrinkage in tumors lungs and liver)
Folfox 6 : Oxaliplatin ;Leucovorin ; 5-FU (fluorouracil)
Rad/Chemo 06/16/2017(Xeloda 14 treatments to make him more comfortable) Ongoing

User avatar
LPL
Posts: 300
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Fri Jun 23, 2017 3:20 am

Welcome justbreathe,

So sorry to hear you have a reason to join. I think you will soon feel that members here share much kindness & hope and advice/suggestions due to own experience.

You wrote:
"I try not to let him see me get discouraged and I keep looking for another direction but keep hitting walls. How do I help him and keep my sanity?"

Totally understand, I have always tried to keep my feelings of worry out of sight. It has at times felt like living in "surreality" (a word created by a member here). Reading and talking to others here has helped me keep my sanity..

If I am 'reading' your words correct, it sounds as you do not feel like your husband has the best Medical team treating him?
Are your Doctors at a Cancer specialist hospital? Was the 2nd opinion at the same hospital?
One thing I have seen experienced members here say is that Surgeons(!) are the ones who can say if a surgery is possible, that is not for an oncologist to decide (on his/her own). Do your doctors work as a team? I'm sure getting mixed messages does not make you & your husband feel trust. Is that why you "keep looking for another direction"?

I only have experience of treatment for colon cancer - is your husband diagnosed with rectal cancer? Sorry I do not understand.. it sounds as your husband started with chemo? As I can remember, seeing from members with rectal cancer, it looks like they normally first have a combination-treatment with radiation+chemo. Good to hear that your husband's mets in liver and lung have responded to the chemo and I hope his primary tumor also will respond and shrink with the upcoming combination of radiation and Xeloda. It sounds as he is a strong man.

As wifes/caregivers we want the best care & treatments for our loved ones. Many of us 'read & read' to learn and we make sure we have copies of all tests done and that we know of all treatment options 'out there' - to be able to ask questions when we meet the doctors. One thing that made me aware of things to know about my husband's case was creating the signature members here have. Here is a link to advice how to create a signature https://coloncancersupport.colonclub.co ... 97#p421597


Again welcome justbreathe
Kind regards
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

inorganic8
Posts: 41
Joined: Mon Feb 27, 2017 6:13 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby inorganic8 » Fri Jun 23, 2017 7:09 pm

Sarah, I hear you sister. Some days are ok and I can function. Some days, it seems almost impossible to get out of bed, let alone converse with someone. I'm glad your are able to frame your MSK visit a little differently in your mind. I hope that very soon you will be able to add to the recent list of good news.

justbreath, Lena gave you some great advice. We are in this boat together, paddling upstream. We're in a lousy situation, but we're in good company. There are good folks here who will help you. How do I keep sane? I know it is going to sound hard to believe, but it does get better. Humans are resilient and we adjust. Every one of your feelings is valid, they are real, it is ok for you to have them. I see a therapist twice a month to work through the whole range of emotions. I highly recommend it if possible. Second, it is critical that you take care of yourself too. I know that one is really, really hard. Start with 10 minutes each day and do something that makes sense for you. Take a walk, read a book, play over-the-top shooter video games, meditate, anything. I think it's important to work up to more than 10 minutes, but start somewhere. Your handle is apt. Sometimes the best thing to do is close your eyes and take a couple of deep breaths. You are going to rise to this challenge. We all do because we don't really have any choice. 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
Follow-Up PET 9/13/17 - Stable Disease

User avatar
LPL
Posts: 300
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Sun Jun 25, 2017 7:40 pm

Hi again justbreathe,

I'm thinking about that you wrote regarding your husband - "How do I help him?".
Today I was looking at the latest version (2017) of
ESPEN guidelines on nutrition in cancer patients
http://www.espen.info/wp/wordpress/wp-c ... lished.pdf
They mentioned radiation(+chemo) and referenced a study that might interest you since you mentioned that your DH (Dear Husband) will be having that treatment now.
This is the study:
Dietary Counseling Improves Patient Outcomes: A Prospective, Randomized, Controlled Trial in Colorectal Cancer Patients Undergoing Radiotherapy http://ascopubs.org/doi/10.1200/JCO.2005.02.054
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

Jess81
Posts: 3
Joined: Wed Jun 07, 2017 5:29 pm
Facebook Username: Jessica Langton

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Jess81 » Sun Jun 25, 2017 8:52 pm

SarahS and Lena, I appreciate your replies and advice so much. Am always very humbled by this sort of kindness and kinship, and at how much it helps me personally. Thank you. Sarah which part of the UK are you from originally?

I hadn't realised how this horrific journey is so much more than sadness. When I first heard the news about my Dad and started to try to make sense of the trauma I felt that we must "make the most of every moment we have left" and assumed we would book lots of holidays to places we have been as a family etc. (Although this would be challenging as I am a mum to a two year old and a 12 week old)
But I think I was naieve and wasn't thinking about how this is for my Dad. He seems very positive and calm at some points but then so very down and withdrawn at others. He is such a giving and gregarious man to everyone usually but he seems so vulnerable all of a sudden and to have lost confidence. He describes how his mood is changing really hour to hour and although he hasn't said this I feel he is just so terrified. I feel so incredibly protective of him now. When he tells a joke in a group of people for example I laugh way too loud, that type of thing.
More than ever I wish he had some amazing friends to really support him. I see how unsupportive some of them have been and how much he is yearning for really good support.

Anyway I am rambling here! It's 3am and I woke up having had terrible nightmares about all sorts of things.

Sending my good wishes to all here.

Jess x
Female, age 33
UK
Daughter of Dad with stage IV CC, age 69
Surgery to remove stage II tumour in colon - July, 2016
March, 2017 - mets to liver, lungs, area behind stomach and lymph nodes found on PET scan
Was told these are inoperable
Due to begin chemotherapy (not sure which type)

User avatar
LPL
Posts: 300
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Tue Jun 27, 2017 9:48 am

mhf1986 wrote:
Lena, SO happy for you! Go buy some new dancing shoes and have a wonderful time at the wedding.

Melissa,
Thank you ! Your words actually made me step in to a shoe shop today and I came out with new shoes :wink: Sadly I can't dance yet (still in the 'recovery phase' from my fractures) but I can now look at my feet and smile :)


Jess wrote:
More than ever I wish he had some amazing friends to really support him. I see how unsupportive some of them have been and how much he is yearning for really good support.

Jess,
My DH also noticed that some friends stepped up with good support while others did not - or maybe it is 'they could not'? Some, I believe, don't know what to say (almost like they become afraid..) and they step back.

Have you checked if there is a Cancer support group in your area? Maybe the hospital know? Perhaps your DF would find new friends there? Friends that understand what he is going through, both physically and mentally. We caregivers can not understand how it feels to be the one diagnosed, no matter how much we try..

Also maybe your father doesn't want to make his close family sad and is trying to be strong? As you have described him it sounds as he is Not a person who put himself first, but instead always want to help others.

Do you think going to a local Support Group's meetings would be something for your father?

In your previous post you wrote:
"I wanted to ask for advice really on any tips for how I could make my Dad comfortable during chemo. Are there things he will likely feel when having the chemo that I could buy any products for? "
Just want to make sure that you have seen this thread that came up after you posted that question. https://coloncancersupport.colonclub.co ... =1&t=58259 Members are sharing a lot of tips there.


Kind Regards to All
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

Lee
Posts: 5248
Joined: Sun Apr 16, 2006 4:09 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Lee » Tue Jun 27, 2017 2:37 pm

justbreathe wrote: . . . The oncologist said his cancer was treatable, not curable and their wouldn't be any surgery. . .


Sorry for butting in butt, an Onc should not be giving surgical opinions. The surgeon is the one to be giving that advice. If the surgeon says it's possible, believe the surgeon. They are medically trained to know that they are talking about.

All the best to you and your husband,

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!


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