Husband just DX stage 4

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Pwheelhouse
Posts: 163
Joined: Fri Sep 28, 2012 9:04 pm

Husband just DX stage 4

Postby Pwheelhouse » Sat Sep 29, 2012 10:28 am

I have been reading posts for about a week. I just joined though. I hoped that this was all a dream and not really our lives. My hubby has always been the caretaker of the family. I'm sure you know the type. Supporting his family was his job no matter what it took. We have been married 24 years this month. In those years he missed five days of work for illness. Now they are telling us he may never return to work. We will be fine financially because God prepared a way but if he can't work I'm not sure he can fight this. Work is who he is. He just turned 49 this week.

There is so much to take in at once I am not sure where to begin. Pardon me as I learn all the acronyms. We were told yesterday that the heated chemo was not an option however I see people on here receiving it. Does anyone have a article they can site? My gut reaction is to get him to one of the big cancer centers like MD Anderson, but he thinks the travel would be to much. He wants to be near our grandchild. He is three weeks out from his colectomy. He is scheduled to start chemo next Friday. They are going to wait to start the avastin until he has a few more weeks of recovery under his belt. His entire abdominal cavity is full of mets and I suspect we will find it on the lung as he has developed a cough of late. He is scheduled for a CAT on Monday. In three weeks time I have seen him go down tremendously.

Two years was the answer we got understanding there is no crystal ball. We are praying for a miracle but living in the reality. Am I wrong to want him here with me but not want him to endure what that will take from him. He wants to fight this thing but my heart breaks for him because I don't think he fully understands what the fight will be like.

I am rambling but that's all I seem to be able to do right now. Just wanted to say hi. We are part of the club but would like to find out who put us on the list and beat the crap out of them!!! By the way my name is Patty and my hubby is Robin.
Wife to Robin DX 8/21/12 stage 4 with mets in peri.
Colectomy 9/12/12
Porta cath 9/28/12
First chemo 10/5/2012
5FU
Round 4 11/16/2012
Finished 18 rounds
Irinitican and avastin
Hospice
Robin gone from this world January 3, 2014

done
Posts: 197
Joined: Sat Jul 21, 2012 10:31 pm

Re: Husband just DX stage 4

Postby done » Sat Sep 29, 2012 11:46 am

Dear Patty,

I am so very sorry you are having to deal with this, and of course feel so bad for Robin. It is a very difficult road, not only physically but also psychologically as we try to figure out how to walk this path. My experience is that the answers about treatment were not so clear for me with stage IV. For some, things remain clear.

Even if Robin has the kind of mets that make a total cure unlikely, that doesn't mean that extending life isn't possible, sometimes for a long time. And that life can be very, very good.

From my experience, I would tell you to make sure that you let your oncologist know what level of information you want. Some people are motivated by knowing facts/details/statistics, others are not. What helps you is what is right for you. But I did find (and have talked to others who found this to be the case) that I needed to be very direct about what I wanted from my docs. Early on you can be overwhelmed by too much info; as you go along you will know when you want more. (I'm saying "you" in plural.) In addition to your docs, this is a great place to come for info. I wish I had known about it sooner.

As far as going to a large cancer center, would it be an option to go for an evaluation even if Robin didn't want to get treatment there? I frankly don't know the answer to that, but there are folks here who can answer if that is a question for you.

Again, my sincere condolences for being in this club, and a wish for peace and a very good life ahead.

done
Posts: 197
Joined: Sat Jul 21, 2012 10:31 pm

Re: Husband just DX stage 4

Postby done » Sat Sep 29, 2012 11:52 am

Oh, and I meant to say that perhaps Robin can take this fight on like a new job. A great work ethic can really help out on this journey! And many of us are able to keep working longer than expected.

hannahw
Posts: 2098
Joined: Sat Mar 22, 2008 4:35 pm

Re: Husband just DX stage 4

Postby hannahw » Sat Sep 29, 2012 2:07 pm

The time that immediately follows diagnosis is a huge adjustment (how long really depends, sometimes weeks, but I think for most people it takes some months). Everything feels chaotic because your normal is being turned upside down. The things that make you who you are may be thrown into disarray. If you've always worked and you can't it feels like something fundamental is being taken away and it's hard to imagine it's possible to fill the hole that is left. But, the hole WILL be filled. It just takes time. It's the process of finding a NEW normal. We are resilliant creatures, it's engrained in our DNA.

When my Dad was first diagnosed it felt like we were entering a dark tunnel that had no end in sight. I remember sitting on the window sill of the ICU and thinking "WTF is going on here? Is this his life from now on? What kind of life is this? How will he manage? How will we manage? What if we can't manage? And why is the god damn nurse taking so long to do the simplest things?" The stress and fear are spurred by the unknown. If there's good news, it's that you learn more every day. You become more experienced and your knowledge will help give you new tools to cope and go on. The nurse isn't an idiot (she might end up being your best friend) and you are more capable than you ever imagined. We don't know we can do certain things because we've never had to. But when the bell rings, you answer the call.

Take it one step at a time. Eventually, you'll look up and realize there is light. Just keep walking. You'll get there.
Daughter of Dad with Stage IV CC

las
Posts: 758
Joined: Wed Jul 20, 2011 3:43 pm
Location: Houston, TX

Re: Husband just DX stage 4

Postby las » Sat Sep 29, 2012 3:56 pm

Patty,

Welcome, and you have found a great group of people here. You will learn a lot from this board if you read and ask questions. I found this club shortly after my husband was diagnosed and have never left and I am still here because the support is still so good for me. I was the caregiver to and know the shock, pain, scared...every feeling possible you are feeling. My husband just recently passed away sept 10th, 2012 and I a, not telling you this to scare you, but just so you know who I am and where I am coming from. I will say first and foremost, get a second opinion soon and even a third if you have to. There are so many treatments available and some cancer centers or doctors will not do them all and other might think outside the box more than others.

First of all, it would help if you put in your signature line some things about his cancer that will help others identify what your husband is dealing with. I am assuming the heated chemo your talking about is the procedure know as hipec? Is that correct? My husbansd had cancer all over his liver, peritoneal mets, which is in the abdominal cavity and on his adrenal gland. Every option I brought up to md Anderson , they told us he was not a canadiate for. Have they removed the tumor from the colon? Or where is the primary?

As others are saying, it might take months to adjust, but you will find a new normal, and them when you do find the new normal, thing will change again perhaps. It's a roller coaster ride, but you take it one day at a time. You need to live ever day to the fullest and you will soon learn what is important and what's not. There is a thread on here for wives of husbands with stage IV freaking colon cancer that has helped me with my support and I think it might help you as we'll. There are several stage IV people on this forum and some have had really great success with treatment and are even NED, what we call no evidence of disease. That is not to say they have not had the cancer come back, but when and if it does, you must keep plugging away.

Keep the hope and faith attitude as this is what is going to get you thru this. You need to be your own advocate and I mean you, meaning you and your husband. The doctors don't always tell you things and you need to arm yourself with as much information as you can, so your ready to fight and stand up for what you think.

I am in a different stage of coping now and still trying my best to make it thru our tragedy, but every persons body is different and they react differently to each chemo treatment. What you want to make sure is have the test done to find out of your husband is kras mutant or kras wild, that will also determine certain chemo options.

I hope I have helped some and others will be along to chime in.

Stay strong and you can do this.

Lisa
Lisa
Fiance DX 6/27/11 CC IV w/liver mets,adrenal glnd,pet.
7/25/11 folfox
8/2/11 surg.colon wall prefor.no removal of tumor
8/24/11 folfox ,3/12 5FU, 5/12 irinitecan failed, 7/12 didn't qualify regronfenib
8/13/12 Hospice, 8/18/12 married, died 9/10/2012

Pwheelhouse
Posts: 163
Joined: Fri Sep 28, 2012 9:04 pm

Re: Husband just DX stage 4

Postby Pwheelhouse » Sat Sep 29, 2012 5:59 pm

Thank you so much for your responses. Lisa, I am so sorry for your loss. My prayers and thoughts are with you.
I did figure out how to add the signature. I guess my biggest fear is that we/ he will make a fatal decision in treatment. The options seem endless. Our current plan is just to get something started and then go from there.

I'm a little freaked because today Robin seems so down. Up to now he's been Rah Rah we are gonna fight this. Today he layed around and just stared into the air. I think it's hit him. I gave a loving push and told him to get up and lets go for a walk,a drive or get on the treadmill. He walked a half mile but is still acting funky. I guess he just needs time. I dont know how to help him. The doctors say no cure just buying time, maybe two years.

I'm going to check out the thread you mentioned Lisa.

I hate that this club has to exist but am already so thankful for the advice and support.

Patty
Wife to Robin DX 8/21/12 stage 4 with mets in peri.
Colectomy 9/12/12
Porta cath 9/28/12
First chemo 10/5/2012
5FU
Round 4 11/16/2012
Finished 18 rounds
Irinitican and avastin
Hospice
Robin gone from this world January 3, 2014

some
Posts: 578
Joined: Thu Jul 05, 2012 1:39 pm

Re: Husband just DX stage 4

Postby some » Sat Sep 29, 2012 6:27 pm

Patty,

I'm no expert, but why are they ruling out HIPEC already? You should definitely consult with an NCI hospital for options for his treatment or see if a HIPEC surgeon will consult. There is someone on the board that had to do chemo for a year before being able to do HIPEC. I wish you and your husband well. Attitude is important and be sure to tell him that nothing is written in stone. Only God knows and as someone said here, you do not have an expiration date and even if you did, the docs don't know jack as far as that goes. They only know statistics. My mom lived 2 years after a doc told her she would only have 3 months or less. And that was without any chemo. It was breast cancer, but an oncologist just the same was telling her that.

If you don't have a doc that believes in your case and doesn't want to fight like you do, get another one.

My best to you. I know it's hard. I've been on this track for three months now and every day is tough, but one foot in front of the other!

Serena
DH (age 41) diag Stage IV mets to peritoneum - July 2012 (undetectable on CT PET or MRI)
Folfox 7 & Avastin started July 2012 CEA, CA 19-9 not indicators
HIPEC surgery 1/18/13
Folfiri/Erbitux - March 2013
Lots of prayers.

Pwheelhouse
Posts: 163
Joined: Fri Sep 28, 2012 9:04 pm

Re: Husband just DX stage 4

Postby Pwheelhouse » Sat Sep 29, 2012 8:38 pm

Serena

Oncologist said it is for ovarian cancer which after one day here has me doubting our doctor. I'm not sure were we go from here???
Wife to Robin DX 8/21/12 stage 4 with mets in peri.
Colectomy 9/12/12
Porta cath 9/28/12
First chemo 10/5/2012
5FU
Round 4 11/16/2012
Finished 18 rounds
Irinitican and avastin
Hospice
Robin gone from this world January 3, 2014

User avatar
pmterra
Posts: 599
Joined: Fri Jul 01, 2011 6:12 pm

Re: Husband just DX stage 4

Postby pmterra » Sat Sep 29, 2012 8:50 pm

Hi Patty,
I too am so sorry you have to join this club but i know you will be comforted by the information and support you will receive. I also encourage you to check out the caregivers thread. There are many women/men who have the same concerns, feelings and fears that you have. I always say that the journey is different for caregivers than patients. Sometimes it feels worse b/c you are just a passenger along for the ride. While neither of you feels like you have any control, you probably have less. It is very very difficult to watch the person you love go through so much physical and emotional pain. My husband also was pretty upbeat after he was diagnosed and had the surgery. About the time chemo started, it hit him pretty hard and all he could talk about was dying. It was difficult for me and our children b/c like your husband, mine was the one who always took care of us and was always so upbeat and positive. And boy oh boy, he did he NOT want us to try and tell him how he should be feeling!

You have already gotten good advice and I am sure you will continue to. You are going to be dealing with so many things, so many decisions you'll both have to make. Your husband is going to need your strength and love and support. You will need the same and sometimes you won't feel like your getting it. As you know everything in your world has changed and turned upside down and even the best of relationships suffer. We all have experienced the helplessness that you are feeing and the overwhelming fear and sadness. We are always willing to listen and help when we can. I'm glad you found us. Lots of love and prayers as you begin the journey.
caregiver to survivor husband
Stage 3C - Colon
surgery June, 2008
6 mo. chemo/FOLFOX & Avastin
June 2015 - 7 year survivor :)

some
Posts: 578
Joined: Thu Jul 05, 2012 1:39 pm

Re: Husband just DX stage 4

Postby some » Sun Sep 30, 2012 12:45 am

Patty,

It is commonly used for ovarian cancer which is what our oncologist knew about it but I read about it here and it is used for colon cancer too. There are about 30 surgeons in the US that do it and there are some limitations such as the disease has to be limited to the peritoneal area and be able to be fully resected.

You are going to have to be your own research advocate. We went to an NCI hospital to see an oncologist and she was aware of HIPEC and thought we may be candidates but that is really for the surgeon to determine not the oncologist. Once the NCI doc referred us, we were able to get insurance to cover a consult (waiting and praying for good one on 10/30).

So, search HIPEC on this board. Look on google and you'll find videos and info. I've done some private messaging with some folks here that have had it and they have been so kind and sharing. We are seeing Dr. Lowy is San Diego. You can see on his site that he does it for colon cancer.

http://cancer.ucsd.edu/treatments/heate ... ndrew.aspx

Also, go to Wunderglo.com. Gloria is an amazing advocate and she had this procedure with Dr. Sugarbaker for colon cancer.

Don't give up hope. Find the answers you need and are looking for. Ok to start chemo because he needs that and they often have you do it in prep for HIPEC.

Best to you.

Serena
DH (age 41) diag Stage IV mets to peritoneum - July 2012 (undetectable on CT PET or MRI)
Folfox 7 & Avastin started July 2012 CEA, CA 19-9 not indicators
HIPEC surgery 1/18/13
Folfiri/Erbitux - March 2013
Lots of prayers.

User avatar
Icesk8tr
Posts: 1068
Joined: Sat Apr 30, 2011 11:37 am

Re: Husband just DX stage 4

Postby Icesk8tr » Sun Sep 30, 2012 1:18 am

Hi Patty,
I'm sorry you have to be here, and that you and Robin have to go on this journey together.I was diagnosed with stage IV CC in 2010. I had mets to the liver, mesenteric wall, part of my omentum and 17 of 18 lymph nodes were positive. My local oncologist gave me two years with chemo. I went to Memorial Sloan Kettering Cancer Center (MSKCC) in NYC. My oncologist at MSK said I have a chance for a cure, BIG DIFFERENCE. Besides HIPEC there is also Intraperitoneal chemo ( IP). Cytoreduction surgery is done the same as with HIPEC. Instead of heated chemo, a port is surgically implanted in the abdomen ( like a medi port ) and chemo is infused into the port three days in a row for three rounds ( nine infusions ). I have had IP chemo twice for peritoneal mets. Even if your husband wants to stay local, please get a second opinion at a major cancer center.

Christine
Stage IV CC 2010

User avatar
WorriedWife
Posts: 1125
Joined: Tue Jul 24, 2012 5:41 pm

Re: Husband just DX stage 4

Postby WorriedWife » Sun Sep 30, 2012 2:51 am

Dear Patty,

I just want to say that I will be saying a special prayer for you and your hubby. I hope his treatment goes very well.
You will find so much information here regarding your situation. God bless you..
Hubby
CC Stg. 2b
Dx 6/12
surgery & reconnect
opted out Folfox
Pet Scan Aug NED
abscess/fistula for over a year
ongoing Dec 2013
Praying for each and every one of you

Nick
Posts: 22
Joined: Mon Nov 14, 2011 11:52 am

Re: Husband just DX stage 4

Postby Nick » Tue Oct 02, 2012 3:21 pm

Hi Patty,
I'm been reading posts off this board for about 1 1/2 years, and like you, I still can't believe it's happening to us. Married 21 years this past August. You'll learn all the acronyms in time (I still have to look some up) as well as more biology and chemistry than you ever wanted. As a caregiver it's a struggle between wanting to do anything to keep them alive but looking towards what they want to do and what the family needs. MD Anderson is great (so I've heard), but a lot of cancer has sort of a 'standard of treatment' that you could get wherever. I'd focus on connecting with a good oncologist, but maybe a one time trip consulting trip to MDA would be fine just to cover the bases ( I took my wife to UAB just to do that, treatment they recommended was exactly what our onc has recommended).

Nobody knows how you and Robin will take to chemo, sometimes there's dramatic changes, and yes, sometimes not. Everyone is different and your cancer may respond totallly different to that 'standard of treatment' than mine.

You're not wrong to want him here with you or to not want him to endure suffering, you're his spouse and your feelings are natural. Since cancer my wife and I have gone through a depth of relationship I didn't know was there. It's not always easy (had more fights in the last year than ever) but my love for her has deepened even more. And since you're mentioned God - He's become more real to me than ever, and I'm more convinced He cares, and He's good.

In spite of what we're going through.

Will pray for you both,
Nick
Caregiver to Angie, 47, mother of 3
DX Feb 3, 2011, mets liver & lungs
resection, colon twist, TACE
FOLFOX/avastin - 12 sessions
Maintenance 5FU + avastin
Progression 7/12
starting FOLFIRIOX
Hospice 1/9/13
Angie passed January 26, 2013 at 3:13 am.


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