Wives of husbands with Stage IV Colon Freaking Cancer

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mhf1986
Posts: 64
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Mon May 22, 2017 6:43 pm

Hi Lena, Yep that was me! I told DH when this whole thing started that there were no rules here...I'd call anyone and ask anything.

DH is a bit irritable tonight. It's part stoma (slight bleeding with Avastin and all around don't like it), part depression I think. He was reading about proton therapy and has concluded it won't work. Um, darling...I know you have a Doctorate...in Economics, not Radiation.

Any word from Sarah about MSK visit? Kim's next steps?

Thanks for chatting Lena,

Melissa
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX, Avastin 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, switched to Xeloda too

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby SarahS » Mon May 22, 2017 7:42 pm

Hello Melissa

That's how I feel, whatever it takes, who ever I have to contact
I think there must be something in the air today, becasue we have the blues here too :(


On Weds we leave for New York , as a Brit I am very excited even if the trip is for crappy! reasons. We'll have a day for sight seeing and then an appointment with Dr Segal on Friday. I have no idea what is going to happen, it's just a consultation at this point, but if you are thinking about contacting MSK yourself I would say do not hesitate, they are extremely friendly and helpful, everyone we have spoken to so far has been superb
Latest scan (last week) showed some slight improvement, we will discuss with our regular onc in more detail tomorrow and I'll let you know how it goes at MSK

What is next for you?
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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LPL
Posts: 302
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Thu May 25, 2017 10:05 am

Hi SarahS,
Just want to wish you & your hubby Good Luck for tomorrow!
You wrote "as a Brit" .. does that mean that you are from UK/England? If so I sincerely hope you do not have any friends or relatives that were affected by the horrible terror :cry: in Manchester.
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

User avatar
LPL
Posts: 302
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Thu May 25, 2017 1:16 pm

Hi Melissa,
About stoma - Sigh. DH had his stomi for only about 2 month but 'we' did not get good support (or more correct we didn't know/understand who to go to/ask regarding problems). I remember one time, a guest came to our house right when I was helping hubby clean&change 'all of it' and we hurried to 'look normal' (this was early on in 'the journey' and that guest did not know what had happened to hubby). After that episode the stoma area became red and irritated. Sigh. It took at least 7-10days before it became fine/OK again and it was for sure not good days for hubby. I hope it will feel better soon for your DH !
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 » Thu May 25, 2017 7:23 pm

Hi Lena

Thank you , that is so sweet of you, we are eating pizza in our hotel room all set for tomorrow!
I am from England yes , I don't have any family in Manchester thank fully but thank you for thinking of me
I hope all is well with you.
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: 64
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Tue May 30, 2017 3:59 pm

Hi All,

First treatment without the OX today. Took about 3 hours instead of 5 from drive in to drive out with go-home pouch. Doc wrote "we'll see what evolves"...perhaps not the best choice of words? Stoma is producing "softness" which nurse said is fine. DH doesn't like it but he soldiers on. We had lunch and a walk around the mall afterwards. The exercise seems to help, especially on Thursdays. He used to do 10,000 steps a day and is trying to average 5,000 now.

Am still thinking MSK opinion in July after that CT scan. We are going to ask about proton therapy when we see Onc in 2 weeks as there is one just down the street from this treatment center, yet affiliated with another university.

Sarah, hope NYC went well for you.

Melissa
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX, Avastin 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, switched to Xeloda too

Regan
Posts: 249
Joined: Sun Mar 02, 2014 11:58 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Regan » Wed May 31, 2017 11:31 am

Hi Everyo
So many new people on here since I was such an avid reader/researcher and supporter.

My husband died last August 10, 2016. He said to me -- four days after being diagnosed with Stage IV Rectal -- "Don't give up on me honey, I'm gonna beat this thing"

Well, he gave it a heroic effort and made it four years. Four years of hell. But, he finally succumbed but not from the cancer. The torture of the treatments messed his internal organs up so much that he ended up starving to death. So, he didn't let the cancer get him--in a sickening sort of thought.

I know this is a very depressing message. Just wanted to reach out. I am not handling this well. We met when I was 11, dated at 14, and married at 16. I had 41 splendid years with him. I cannot get over how such a precious man (who worshiped the ground I walked on) could be tortured and die in such a fashion.

I am an agnostic, so belief in a higher power does not help me. Meds dont seem to help. My family is begging me to get professional help, but I am balking. I cant believe talking to a complete (paid) stranger can help me by talking.

Has anyone reached out to a professional??
DH dx 7/12
Stg IV RC liver mets
11/12 Hrt Attk by Folfox
1/13 Liver resct
4/13 LAR-Temp
NED
1/14 revrsal
4/14 Hrnia surg 4/14
1/15 local recur, liver, lung, aortocaval region of retroperitoneum, anterior wall of distal abdominal aorta
2/15 Irinotecan
1/16 Lonsurf (fail--just zapped. Strength)
Aug 10, 2016 at rest

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby SarahS » Wed May 31, 2017 12:07 pm

Regan I am so sorry about your husband and yes it is depressing to hear but it's reality and I am sorry you are having to deal with it.

I lost my father to cancer when I was 24, last year I lost my mother to metastatic breast cancer, then 2 months later the man I love was diagnosed with stage 4 colon cancer at the age of 41.
I absolutely HATE cancer, it is the most vile devastating disease imaginable, and I find it hard to believe that with all the advances in technology over the last 100 years we are still having to watch our loved ones die miserable and painful deaths or deal with the debilitating side effects of the brutal medication that is the best our medical advances have to offer.
It makes me angry, it makes me depressed to the point where I can barely get out of bed in the morning, but I have to go on and I will and you will
This board has been a huge source of comfort and support to me
A paid stranger can help, I have had counseling and it does help, also are there any support groups in your area, any way of finding other widows that you could talk to?

Melissa -MSK was an experience, I can pm you in more detail about it if you'd like. It wasn't what I expected, not a completely negative experience but not the holy grail I set myself up to expect! The proton therapy sounds very interesting. I hope things are going well for you and your husband. Will you have another CEA test soon?
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

User avatar
LPL
Posts: 302
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Wed May 31, 2017 12:46 pm

Reagan,

So sorry to hear what you have gone through and how you are struggling to cope. Like Sarah I have lost a number of Dear loved friends/family to this BAD disease.
I have not yet myself felt the need to take a medication or go for consultation, but I would go and (pay) talk to someone if I felt the need.
Have you seen that there is a thread for loved ones left behind ? Maybe you can find more experience there? Here is the link. viewtopic.php?f=1&t=46183#p456273

All the best to you !
and please know that you are of course welcome to stay & talk to us here on this thread!!
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: 64
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Mon Jun 12, 2017 7:43 pm

Hi Sarah, I would love to hear more about your trip to MSK but wasn't able to send you a PM. Maybe you can PM me?

DH's CEA is down to 12 again but the neutrophils were .9 on Friday. So we're headed to the hospital for 7:15 blood draw tomorrow to see if the neutrophils are up enough for treatment after. There will be an oncologist meeting at 8 where DH plans to ask about "Concurrent" treatment to see what kind of answers we get.

We have 2 people at Georgetown to call for consults who come recommended by a work friend who is 5 years NED from stage III. One wrote an article on spheres last year and Georgetown just got their Proton machine in April.

Really tired of people say do Folfox, do Folfiri, and then so sorry.
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX, Avastin 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, switched to Xeloda too

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 » Tue Jun 13, 2017 8:11 am

Hello everyone,

My name's Jess, I am from the UK. I am brand new here. Am I posting the right way or in the right place?! Not sure!

I am here as a loved one of someone with advanced colon cancer.Last year he had some of his bowel removed but then he had a more recent PET scan after 6 months. I am very new to the terminology but he has been told it is stage IV and he has spots in the liver, lung, lymph node and behind the stomach and has been told it is inoperable. It is the worst thing I have ever heard really so far in my life, It is very new to us but the consultant has said that he could have some chemotherapy although I am not sure when it is due to start.

My Dad has been the best Dad imaginable to me. He has looked after me and our family all my 33 years and ANYTIME I have needed him he has gone above and beyond to make things right. This included him setting up a full-time Dad-taxi service to me and my sister and brothers! :-) Also recently I drunkenly lost my engagement ring at a music festival with thousands in a field of people and whilst everyone else raised their eyebrow at me when I told them, my Dad somehow contacted a metal detector enthusiast society and to get them on the case the next day when miraculously the ring was found! It is just one example but he has always been a very practical and can-do man when it comes to others. My younger sister and I more than anything want to be able to help my parents now and to be as practically minded as we can (we are both very emotional people usually!)

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?

I've just read the post back and it sounds really factual and to the point! I love my Dad so much and don't want him to go through this, but I am inspired by reading others posts on here about the wealth of love and support that people give one another, even to strangers. That very much sums up my Dad too.

I hope to talk with some of you here.

Best wishes to all,

Jess
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)

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 13, 2017 2:25 pm

Hi Jess

I am so sorry you are having to go through this with your Father,I am from the Uk originally and lost my father to cancer 23 years ago.
I think treatment has come a long way since then and it wasn't colon cancer he had, not meaning to scare you, just to let you know I can relate to the feelings you are experiencing right now
Read and research as much as you can, this forum in particular has been incredibly useful to me and my husband on our journey
I know that you have less choice over who you see in terms of oncology if you are using the NHS over there, but from what I have read of other Uk colon cancer patients on this board, the care there is very much the same as it is here in the US.
Chemotherapy sounds terrifying and it is pretty sucky but certainly doable. Keeping hydrated helps, so water and lucozade (if they still have that over there ?)
and gentle exercise if he feels up to .
You'll have to find out what he feels like eating as you go along, things can taste differently , My husband has cravings for some odd things, we just go with whatever he feels like eating, being able to eat is good :)
Those are just a few things off the top of my head, most importantly use this forum, it's full of great information and best wishes to you and your Dad.

Melissa- I'm glad to hear that the CEA has dropped down, we have had problems with low neutrophils 2 or 3 times now, once we had to miss a weeks treatment and then the next time our onc said he would take a risk and do the chemo anyway. Are you doing neupogen injections? they are very effective
It seems that I can't private message you either, I think we both must still be too new to the forum
In a nutshell I feel that what we discussed at MSK could quite easily have been done over the phone and saved a lot of time and money. They said husband was eligible for the clinical trial we were interested in but that it would involve traveling to NY for infusions every week which is just not practical and they also said as the chemo he is currently on is working to stick with it????????
I felt like we only really had the opportunity to ask one question and that was about the clinical trial, nothing else was discussed. So like yourself we are still researching other options.
What is so frustrating is that he has only a few tumors and they are small but becasue they are in more than one place, no one will touch them surgically
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

User avatar
LPL
Posts: 302
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Tue Jun 13, 2017 3:59 pm

Hi Jess,
I am So sorry you had the need to find us!
But Welcome to the Forum !!
You will find a lot of experience and knowledge here and kindness.
Like many here have said before me: I hate cancer!!!
That it exist is So BAD and that it happens to the most wonderful people, like your farther !! - it feels so unfair !!

SarahS has given you a lot of good advice!
If you look at hers and mine signatures at the end of our posts - can you share something like that? It is good if you can make a signature, it will be a lot easier for members to suggest/advice if you post a question.
I know that you are not asking here now for anything but "How to help make your Dad comfortable during chemo" but if you will be interested later with other questions for example regarding what treatment options are 'out there', it would be good to have a signature.
How to create a signature viewtopic.php?f=1&t=52681&p=421597#p421597

To your question.
Here is s post (from 2012) by a daughter to a father - maybe it can help you with tips how to help your father?
http://coloncancersupport.colonclub.com ... 72#p251524
I'm not sure it is mentioned in that post but I have seen posts where people have felt thankful when friends offer to drive & accompanying them to the treatment and also offering practical help with housework, cooking, ironing, gardening etc. - what ever practical things that your father want to do but the treatment is making him too tired to do.

Again Welcome Jess !
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

User avatar
LPL
Posts: 302
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Wed Jun 14, 2017 4:50 pm

Hi friends,
Can I please ask you to think good thoughts tomorrow for my DH. It is a check up (ultrasound this time) and we will meet his Onc 1 hour after to get the result.
We are hoping... for 'no bad news'. Our daughter is getting married on July 1st and she lives far away from us and we hope to be able to travel to be there at the ceremony.
Thank you in advance !
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

jhocno197
Posts: 809
Joined: Mon May 11, 2015 9:33 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby jhocno197 » Wed Jun 14, 2017 6:27 pm

LPL wrote:Hi friends,
Can I please ask you to think good thoughts tomorrow for my DH. It is a check up (ultrasound this time) and we will meet his Onc 1 hour after to get the result.
We are hoping... for 'no bad news'. Our daughter is getting married on July 1st and she lives far away from us and we hope to be able to travel to be there at the ceremony.
Thank you in advance !
Kind Regards to All
Lena


Hoping for no bad news.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17


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