Wives of husbands with Stage IV Colon Freaking Cancer

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LPL
Posts: 270
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 3:00 pm

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

Lee wrote:
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.

Thank you very much Lee for "butting in"!
and for confirming that I had understood/replied correct.
I had replied:
"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? "

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

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby SarahS » Tue Jun 27, 2017 9:58 pm

Jess, I am so sorry to hear you are having such a hard time, believe me I know how you feel.

I just wanted to let you know that all those feelings are of course perfectly normal, even the nightmares unfortunately, butt--- it does get better

As the chemo starts to work on the tumors and you get into a routine and things start to settle down you will have bright days, you'll have days where you forget all about the stupid cancer and you will laugh and do things you always used to do , and that was something else I meant to say about dealing with the chemo etc. Try to make time to do "normal" things, things you used to do as a family. At the start it feels like everything is about cancer, it consumes your every thought, its all you can talk about and its horrible, but that will settle down
Cherish those good, normal days and let them give you the strength to carry on
My best wishes to you and your Dad.
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: 33
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 28, 2017 6:25 pm

Totally agree with Sarah S. Sometimes, you have to force yourself to do something else. But pick something and do it. Watch a baseball game on TV with dad/husband/etc and make a promise to yourself to not act like a nurse. Go to the donut shop or bookstore or for a drive to see the ducks at a local pond. Argue over politics! It is very hard to make yourself do this but it is so worth it. Just pick one thing that is your thing.

Melissa
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX, Avastian added 12/16
2/17: 1 liver tumor shrinking, CEA 31
4/17: CEA 11, blood pressure medicine added
5/17: liver stable, CEA 15, OX discontinued due to neuropathy
8/17: liver stable, CEA 14, vitamin D added

Georgeann11
Posts: 1
Joined: Wed Jun 28, 2017 9:25 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Georgeann11 » Wed Jun 28, 2017 10:26 pm

Hello Everybody,

I am new to this site so please forgive me if I am using it wrong. My husband (43yrs old) been recently diagnosed with colon cancer (we think) we are stuck in this stage of the unknown. We were told he has a sigmoid apple core lesion with suspicious liver mets. It all started MDW 2017 with pain in his back that traveled to his lower left quadrant. A week later, I forced him to go see a urologist as we both thought it might be kidney stones which he recently had. After the sono from urologist showed no stones in kidneys he sent us for a CT scan without contrast explaining that maybe the stone moved and couldn't detect on sono. CT scan report shows 4-5 cm mass in colon with multiple 2mm suspicious for liver met. That was the day I'll never forget. Every time I relive it I get that knot in my stomach again. Next we were scheduled for a colonoscopy. Gastrologist said he was pretty sure it's cancer and recommended two different surgeons. One from Mount Sinia in Manhattan and one from Sloan Kettering. In a panic, we made the first appointment we can get. The first was Mount Sinia. Dr seemed very honest and confident. She explained that he has a blockage and he needs surgery and she wont know anything about the liver till she opens him up. If something was on the liver they would biopsy during colon resection and if the cancer spread chemo after. The 2nd surgeon we seen at Sloan Kettering had a different approach. He did a sigmoidoscopy and told us that the colon didn't look like cancer but didn't say what it could be but was more concerned about the shadows on the ct scan on liver. Sent us for another CT scan this time with iv and drink. Days later, they still can't make out whats on the liver. Now they want to biopsy the liver first! My poor husband has been in pain because of the blockage. We changed our diet super clean no sugar, no whites, etc. That has helped him a little and he still has bowel movement.

I'm sorry for the long post. I came across this site while googling and found a lot of hope from reading post of people going through the same things. Any advice or any information would be much appreciated. I am lost, scared, angry, confused.

Thank you
Georgeann xo

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LPL
Posts: 270
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Sat Jul 01, 2017 1:53 am

Hi Georgeann11,

Welcome to this Forum.

Sorry to hear you & your husband has to deal with this and that you are getting different views from Doctors - it must feel confusing...
I have No experience like what you describe. In my DH's case they took biopsi of the suspicious tumor in his colon and saw it was malignant, and from the CT-scan and an MRI (just days before the surgery) they 'knew'/we were told the 'spots' on his liver were mets. So no biopsi of the liver.
You are so very welcome to post in this thread ! But I would suggest that you also copy your post and start a new discussion because that way members with more experience, and maybe some who have had the same kind of experience as you, will reply.
Maybe you can title your discussion "Liver biopsi to diagnose Colon Cancer? "
This is the link to start a new discussion
posting.php?mode=post&f=1

All the best to you & your husband.
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

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 » Sat Jul 01, 2017 3:14 am

Lena, Sarah, Melissa - inspired by your comments we have booked to see The Lion King musical as a special treat and a way to forget all the crap!

Thanks for the support and advice - I really value it.

Lena - how was your daughters wedding?

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: 270
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Sat Jul 01, 2017 8:08 pm

Oh Jess,
Thank you for asking about our daughter's wedding :)
I/we just got home from a wonderful wedding, our Swedish daughter now has a wonderful(!) Chinese-American husband. We now have an extended family and our world feels so much bigger & better :D
I hope your Lion King Musical will be a very good experience!
Kind regards
Lena
(Who managed to walk in her new shoes all evening :wink: )
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: 4974
Joined: Sun Apr 16, 2006 4:09 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Lee » Sat Jul 01, 2017 9:49 pm

Georgeann11 wrote:Hello Everybody,

I am new to this site so please forgive me if I am using it wrong. My husband (43yrs old) been recently diagnosed with colon cancer (we think) we are stuck in this stage of the unknown. We were told he has a sigmoid apple core lesion with suspicious liver mets. It all started MDW 2017 with pain in his back that traveled to his lower left quadrant. A week later, I forced him to go see a urologist as we both thought it might be kidney stones which he recently had. After the sono from urologist showed no stones in kidneys he sent us for a CT scan without contrast explaining that maybe the stone moved and couldn't detect on sono. CT scan report shows 4-5 cm mass in colon with multiple 2mm suspicious for liver met. That was the day I'll never forget. Every time I relive it I get that knot in my stomach again. Next we were scheduled for a colonoscopy. Gastrologist said he was pretty sure it's cancer and recommended two different surgeons. One from Mount Sinia in Manhattan and one from Sloan Kettering. In a panic, we made the first appointment we can get. The first was Mount Sinia. Dr seemed very honest and confident. She explained that he has a blockage and he needs surgery and she wont know anything about the liver till she opens him up. If something was on the liver they would biopsy during colon resection and if the cancer spread chemo after. The 2nd surgeon we seen at Sloan Kettering had a different approach. He did a sigmoidoscopy and told us that the colon didn't look like cancer but didn't say what it could be but was more concerned about the shadows on the ct scan on liver. Sent us for another CT scan this time with iv and drink. Days later, they still can't make out whats on the liver. Now they want to biopsy the liver first! My poor husband has been in pain because of the blockage. We changed our diet super clean no sugar, no whites, etc. That has helped him a little and he still has bowel movement.

I'm sorry for the long post. I came across this site while googling and found a lot of hope from reading post of people going through the same things. Any advice or any information would be much appreciated. I am lost, scared, angry, confused.

Thank you
Georgeann xo


So sorry for butting in again.

Hi Georgeann.

Can you start a new thread on the main board with the above info. Many more people will see it and you probably you will get a few qualified answers. My thought, request a PET/CAT. A PET scan should be able to pick up cancer activity.

If DH has a blockage, maybe a liquid diet might be better for him at this time.

If you DH does indeed have liver mets, Dr Kemny with Sloan Kettering has had a lot of success with liver mets. Maybe something to consider.

Hope he's doing better soon.

Lena, congratulations on your daughter's wedding.

Okay, very quietly backing out. Again sorry,

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!

Lee
Posts: 4974
Joined: Sun Apr 16, 2006 4:09 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Lee » Sat Jul 01, 2017 11:59 pm

LPL wrote:Hi Georgeann11,.
You are so very welcome to post in this thread ! But I would suggest that you also copy your post and start a new discussion because that way members with more experience, and maybe some who have had the same kind of experience as you, will reply.
Maybe you can title your discussion "Liver biopsi to diagnose Colon Cancer? "
This is the link to start a new discussion
posting.php?mode=post&f=1

All the best to you & your husband.
Lena


I REALLY should pay more attention. Somehow I missed your response, me bad,

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!

mistydawn_67
Posts: 6
Joined: Tue Nov 01, 2016 9:21 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mistydawn_67 » Mon Jul 03, 2017 6:44 am

Hello :) I am Misty.. My husband "Tuffy" was diagnosed in 7/2011 with IIIB. Underwent treatment and in 4/2016 CEA was up to 8.. Six months later 16, the to 27.7... Finally received a PET scan in April 2017 showing mets to liver/lymph nodes. We consulted MD Anderson in Houston and very glad we did as our local oncologist will work with our TX doc. The treatment was a little different locally and not as aggressive as Houston wanted. The Houston doc seems positive that this would potentially put him into remission and has had patients in remission for 10+ years. The first chemo threw him into neutropenia and he was on #2 when he should have had 3. It is frustrating having to advocate for stuff!!! He is 51 years old. We have two kids who are 24 and 21. Our son was a TBI survivor in 2014. My 220# husband now weighs 164#. He has never been emotionally close to me and will not talk.
I do not know this road will end, but I just don't know how and when. I find my faith in God to be my biggest comfort. I worry terribly about my kids and how they will handle this of course. My daughter internalizes and both have used maladaptive coping behaviors in the past.
We have not been officially "staged" so I am guessing with mets we are to IV. On a side note, I am a hospice social worker, and it really sucks when we have a colon cancer with mets patient on our census.

User avatar
LPL
Posts: 270
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Wed Jul 05, 2017 7:52 pm

Hi Misty,

So sorry to hear that your DH has been diagnosed with recurrence after 6 years(!) - that must be such a shock.. Was he still being monitored with tests after 5 years had passed?
I saw that you joined Colon Club eight months ago - worried about your husband's CEA raising. Maybe you have followed a lot of discussions (before &) after you joined? As I understand it a lot has happened regarding treatments since your DH was first diagnosed 6 years ago. You mentioned chemo now but didn't say if surgery is planned as an option later for your hubby? Best wishes with the treatment, but sorry to hear about the side effects neutropenia & weight loss.

You wrote: "We have not been officially "staged" so I am guessing with mets we are to IV."
I have saved info that I can share about this with staging.
Member Bev wrote:
Most people don't seem to know this, butt our original stage is NEVER changed, regardless of changes in our situations. You are stage III RECURRENT. Even though you are clinically treated as a stage IV, you're still "stage III". This has been discussed so many times over the years. Gaelen, our departed friend, explained the reasoning the best. If people had their stages changed when a met appeared we would never know the true outcomes for earlier stages of the disease, because all outcomes would have shifted to the "stage IV" group.

That quote comes from this discussion
Gaelen's very good explanation of staging, see this post
http://coloncancersupport.colonclub.com ... 95#p208695

Kind regards
Lena
Last edited by LPL on Sat Jul 08, 2017 6:44 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

mhf1986
Posts: 33
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Fri Jul 07, 2017 3:09 pm

Need some ideas on what's going on here and if there's anything I can do...

Physically DH is doing great, very few chemo side effects and all manageable (still hates his stoma butt that's another story). Lately, he has been saying things about not making it more than another 2 years. He bought a new car a few weeks ago, stated it was the last one he'd ever buy and then bought a hospice care book by a nurse. We were at a lovely cafe Sunday when all of a sudden it was "we have too much left to do, I"m really depressed." Today it was "when you move to the retirement place near your school," something we had always talked about doing together when we retire.

He's still ready and willing to do chemo, clinical trials, etc but these new comments are freaking me out and I wind up hiding in the bathroom and crying.

Help...

Melissa
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX, Avastian added 12/16
2/17: 1 liver tumor shrinking, CEA 31
4/17: CEA 11, blood pressure medicine added
5/17: liver stable, CEA 15, OX discontinued due to neuropathy
8/17: liver stable, CEA 14, vitamin D added

User avatar
LPL
Posts: 270
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Fri Jul 07, 2017 4:12 pm

Oh Dear Melissa,

You wrote a while back that your doctor had given you "the 2-3 year speech" as you called it. Oh how I hate to hear that doctors say things like that :!: Did you and your hubby talk about that after the appointment? Maybe this is planted as a fact in his mind since then?
My DH's doctors has never given him 'a time frame' and he has never asked. Also he doesn't read/look up info about his CRC. Your husband does read if I remember correct? But does he ever see positiv stories like we do here on Colon Club? Whenever I search for facts and find myself on an old, not updated site and see old statistics I am thankful that hubby does not search for info. Maybe your DH has read a lot of negative stories lately and that is causing this depression?

I'm sorry for rambling, I wish I had a 'pill' to recommend. I do not think it is uncommon to get depressed when having a CRC diagnos and going through hard treatments.
Do you think he is willing to talk to a psychologist?

Totally understand the "hiding in the bathroom", I would do the same. But maybe, just maybe, when he says things like that, you should show that you are upset by his words..

Warm Hugs to you Melissa
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

MissMolly
Posts: 360
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby MissMolly » Fri Jul 07, 2017 4:32 pm

Melissa:
I know that I appreciate it when I can have dialogue with my family about the reality of my illness and limited time.

For a long time my mother would always respond with a knee-jerk response and of "I cannot face the prospect of your not being here" OR "Keep thinking positive and you will be fine."

Now we are able to discuss the realities of my fragile health in conversation that is raw and authentic. It honestly is a relief to be able to have these conversations. Everything is out in the table, so to speak.

The advantage? It enables us to then live more fully without having to tip toe around uncomfortable topics. Everyone's mental health in my family is better and more stable for adopting an open approach to conversation.

The open approach may be for everyone or every family. I have the benefit of a psychologist from Palliative Care who visits with me and each of my family members.

It sounds as though your husband is wanting to invite more open dialogue with you regarding his state of being. I would encourage you to take gentle steps in opening up conversation between the two of you, as your husband provides the lead.

Instead of being frightened or sad as you are now (being in the bathroom crying by yourself to shield your husband from your pain) you may find the experience will have benefits between the two of you.

My compromised health has brought my mother and I to a special place between us. We are able to address grim realities and then place those conversations aside, allowing us to live more genuinely as mother and daughter. Uncomfortable topics are no longer as uncomfortable to face and address.

It is as real as it gets. I would not want to have it any other way.

There is nothing easy in the role of caregiver. I do not envy you.

My genuine advice to you is to neither shy away from nor be afraid of what your husband is expressing. It is a testament to his trust and love with you that you are the one that he has chosen to open up to.
- Karen -
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby SarahS » Fri Jul 07, 2017 7:03 pm

Melissa, I am so sorry to hear about you being upset, I know all about the hiding of tears :cry:

I also know that both my husband and myself have our good and our bad days, days of hope, days of optimism, days of despair and the occasional rare days of normalcy when we don't think about the cancer at all.
You say your husband is doing fairly well on the chemo, same situation here, we are doing xeloda now instead of the infusion and for the most part it's tolerable
We saw a little rise in CEA the last time it was checked, of 0.6, the onc was not too concerned. How about your CEA, still going down?
I spoke to my brother in England yesterday. He has a friend who is 81, she was diagnosed with colon cancer in 2010 and told by her doctor that she had 2 years. She is still alive, well and cancer free today.
I take some comfort from that. We none of us know when our time will come
I think these days now that we have settled into a chemo routine can be harder than the early frantic days in a way.
Don't forget about immunotherapy, I see Tom's latest post as very promising
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


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