Wives of husbands with Stage IV Colon Freaking Cancer

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tinaroseh
Posts: 1
Joined: Thu Mar 29, 2012 10:06 am

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby tinaroseh » Thu May 03, 2012 3:30 pm

Hello, My name is Tina and this is my first post. I've read the majority of the posts here tho so I kinda feel like I know you ; ). My husband was diagnosed stage IV cc in november at age 43. I'm 35. I have been down the cancer trail before as we lost our 2year old son to cancer in '05, but honestly it was nothing like this. Losing our son was horrible it has broke my heart and left a gaping hole, but it is so very different now that it is my husband. I can relate to ALL of the things said here and am so thankful I found this. It is amazing to know that others know how I feel, as it's been said our family and friends, through no fault of their own, just don't get it.
It's been six months and I finally feel like I'm starting to see straight. It's all so emotional and even though my husband and I are riding the same rollercoaster we are in seperate cars...we are hardly ever synced up...he's doing good and I'm a mess...or...I'm feeling strong and he's worried and stressing, sigh. I can relate to the conversation a while back discussing the husbands who are usually mild mannered laid back and patient and now are at times mad and frustrated. Cancer changes everything. So far Scott's journey has been decent. He responds/tolerates well enough to the chemo recovers well from surgery and will be going back to work Monday.

I will say I'm worried about the return to work. He travels out of state 10days and is home 4days. HE thinks he can get chemo on a wednesday and be off to work by Sunday night...this past Monday was his first round of chemo since his liver resection. Technically his seventh round with a two month break for surgery/recovery. So today is day 4 and he is so exhausted, which was and is typical for him. He usually didnt feel 'better' until day SEVEN!! How in the heck does he think he can go to work on day 4!? I guess he will have to figure it out. I know he really struggles with the provider mentality and I'm a stay at home mom so there is no income from me...yet. I know I'll eventually have to get a real job. I'm a photographer but cannot rely on that...so a 'real' job, but we still have a daughter at home, she's 4 we also have a 5 and 11 year old all daughters, and I have nada for a degree and won't child care take up all my wage and and and...
anyway, I'm so very thankful for this forum. We don't have cancer support groups around here. You and your stories have helped me realize that I am not crazy I am not as much of a mess as I thought.
Peace, Tina
wife of Scott age 43
dx stage IV cc November 2011
12/11-2/12 folfox+avasin
3/12 Liver resection
4/12-7/12 folfox+avastin
8/12&11/12 scans showed NED
3/13 scan showed mass in peritoneum
3/13 folfiri+? (2 left)
Next scan 9/13

MelanieB
Posts: 115
Joined: Tue Feb 07, 2012 11:47 am
Location: Vancouver, BC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby MelanieB » Thu May 03, 2012 6:00 pm

Welcome Tina. So sorry you have to be here but I'm glad we can help you feel not so alone. I have 3 daughters but they are 18, 22 and 24. It must be so hard when your kids are so little still. And I am so sorry you have already had such a tragic loss. I know the frustration of one of you being up and the other down and trying to figure out how to comfort each other and when to talk about your deepest feelings and when to avoid it. All I can say is we've been figuring it out.

Today is a down day for us. We had an oncologist meeting this morning and although there were no major results to talk about, my husband told me on the way there that his shortness of breath and coughing have been getting worse and this is since his switch to Folfox the last 2 rounds. This says to me that the chemo may not be working that well but the oncologist says to wait on that judgement till the next CT scan which he has booked a few months from now. He also said, though, that if Terry feels worse in the next few weeks, to call him and they will do a scan to see how things are going. When asked, he told us that when chemo stops working, we will only have about 2 months. That was a smack in the face. Suddenly the end doesn't seem so far away. I've been feeling so good about him seeming to handle folfox better and then this....
On another note, our daughter graduates this June from high school and Terry was asked to be the parent speaker. What an honor!! I'm so pleased for him. He has been an amazing youth leader at our church for years and has made such an impact on so many kids. Very thankful for that.

Blessings
Melanie
Husband (48) diagnosed Stage 4 May 19, 2011
Surgery to remove tumour
Mets to liver, lungs and lymphs
Completed 15 rounds Folfiri and Avastin
Started with Folfox 9 rounds
Aug. 27 stopped working
Given 6-7 weeks
Went to heaven Dec. 19, 2012

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby pmterra » Thu May 03, 2012 6:27 pm

Hi Tina,
I am so sorry to hear about your husband and the loss of your son at 2 years old. I cannot even begin to imagine the pain and suffering you have already been through. I am glad that you found us and that our posts have helped you. Your mention of the roller coaster is something we can all relate to. My husband and I were always trying to stay on the same track but it's so hard. What we go thru as caregivers is so different than what our spouses are going thru. All we can do is our best. You certainly have a lot on your plate with your children and your hubby traveling so much. When my husband was diagnosed I had severe separation anxiety for the first year especially in the first 6 months! I really was a mess complete with panic attacks. I knew I had to be strong for my 2 sons even though they were grown and on their own. I realized I couldn't do it all on my own and eventually sought help through counseling and medication. Maybe that is an option for you. You really have to be patient with yourself and also be good to yourself. I hope that you have family close by? Accept whatever help they can offer. Don't feel guilty - you are trying to get through a horrendous time and shouldn't be isolated.

Welcome - hate that you have to be here - but we are a very supportive group and will be here whenever you need us. We have a nightly prayer at 9 pm each evening and you and your family will be added. Stay strong and let us know what we can do to help! We're all in different stages in this but we share a common bond and it is a strong one. Welcome, Tina :)

love,
Paula

p.s. I tried to tell my husband what he should and should not do while he was on chemo - it didn't go over well! Your husband has to try and see what he can handle. Just be supportive and encouraging. He will figure it out. I'm sure he feels like he has lost control of many things and if continuing to take care of his family helps him to feel more in control, it's what he has to do.
caregiver to survivor husband
Stage 3C - Colon
surgery June, 2008
6 mo. chemo/FOLFOX & Avastin
June 2015 - 7 year survivor :)

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby pmterra » Thu May 03, 2012 6:32 pm

So sorry to hear your news Melanie :( I pray that things will get better for your husband. Thinking about you and sending you love and hugs always! ~Paula
caregiver to survivor husband
Stage 3C - Colon
surgery June, 2008
6 mo. chemo/FOLFOX & Avastin
June 2015 - 7 year survivor :)

Pagal1
Posts: 66
Joined: Sun Jan 15, 2012 11:10 am

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Pagal1 » Mon May 07, 2012 4:04 pm

Well we r back again in the hospital... Sbo????rt now he's on fluids and pain meds.. Last nite was horrible at home ..
Ct can now show (?)liver mass??.....the cancer is marching on .. I was angry with his parents this morning who were again making excuses and then had the gall to tell me that it's my "duty" .. To do this .. Yep work an almost 80 hr job,stay awake notes on call,be a nurse and caregiver to my hubby, and make sure kids do fine all with a Brite smile on face...
this weekend for the first time we accepted help and had people over to help spring clean our backyard... They are more of a family to us.. I thank God for that, cry...and wonder why he chose me for this? There has to b a reason.. Our newest mbr, welcome.. We r here 4 u.. Melanie... Praying 4 u
Shital
Wife to wonderful husband
CC-6/09-age39
3C-SBTL colectomy, FOLFOX(12cyc)
7/11-cancer returns-Stage4-omental mets
6cycles FOLFORI & Avastin(3)
HIPEC & cytoredn-11/11
gastroparesis-6/12-still onTPN,liver & lung mets
Folfiri -2nd opinion now

MelanieB
Posts: 115
Joined: Tue Feb 07, 2012 11:47 am
Location: Vancouver, BC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby MelanieB » Mon May 07, 2012 9:39 pm

Paula....Thank you! How is your husband doing?

Shital....I am so sorry for what you are going through. It all sounds like just too much to handle. And then to have insensitive in-laws on top of it all.

Would like to hear from the rest of you. How are things going? What are you all struggling with right now?

Love to all
Melanie
Husband (48) diagnosed Stage 4 May 19, 2011
Surgery to remove tumour
Mets to liver, lungs and lymphs
Completed 15 rounds Folfiri and Avastin
Started with Folfox 9 rounds
Aug. 27 stopped working
Given 6-7 weeks
Went to heaven Dec. 19, 2012

Mojo
Posts: 729
Joined: Sat Mar 26, 2011 1:43 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Mojo » Mon May 07, 2012 10:48 pm

Melanie, shital, and all. So sorry things are rough now,
Shital, I had a hard time accepting help and worked many hours, but I would say let some friends help if they ask, even to sit with you both and talk, somehow it helps mentally, so sorry hubby in hosp with pain. Maybe you can get home health nurse, aides when he goes home from hosp for a while. Praying for you
Melanie, sorry for such shocking time put on life after no chemo. Just take each day as a treasure. Glad of the honor bestowed on your hubby. Am praying for you too, honey
Welcome Tina, sorry about your hubby and the loss of your child, you have felt great pain in your life and dealing with this is so hard. Praying for you also.
Paula, take care of yourself too.
24 weeks today since Kenny died, I can't believe it's been so long. I'm still standing, but I don't know how, one day at a time, I guess. My granddaughters are getting closer to me, and I am trying to be the person I think Kenny would be proud of. I found another nickle in the laundromat washer, I was pretty low, and I know Kenny was trying to cheer me.
Stay strong wives, remember the small times you take for yourselves will give you the courage to go on.
Love and prayers for you all!
colon cancer stage 3 2n0mets 2002
cancer returns march 2010
emerg brain surgery, chemo may 2010 sterotactic radiation april 2010

progression of tumors march 2011 new chemo camptosar leukovorin 5fu avastin
Kenny age 58/died 11/21/11

SMR
Posts: 631
Joined: Thu Feb 16, 2012 1:20 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby SMR » Mon May 07, 2012 11:59 pm

Just checking in here to say hello to all. It's so hard to believe the things this disease brings about. I think about yu all so often. Tina, Im glad you chose to post, you are so very welcome here and your post struck me.

We are in a holding pattern right now ourselves. DH is almost 7 weeks post HIPEC. we meet with the med onc a week from tomorrow to decide when he will be ready to get back to chemo. I had to go back to work this today (have been putting in a few hours, but mostly working from home & hospital til now. ) It was a tough transition day for me. In good news, he was able to get off his TPN last week and has been (with varying success) eating actual food for an entire week now.

There are so many other things I want to share... So much personal stuff that I don't want want to share with my real world people. Perhaps I'll get the nerve... Or the time someday soon!

Thanks to all of you who are enduring this crazy journey as I am.

Much much love to you all.
DH DX 10/11 st IV unkown prmry
FFOX 12/11
HIPEC 3/12
FFOX 5/12
7/12 FFIRI
12/12 xeloda
1/13 resection
2/13 FFIRI
4/13 5FU/Avastin
9/13 recurrence, failed surgery
Abdominal fistula
11/13 gemzar, heart attack
12/13 Carbo
2/14 Radiation
3/28/2014 passed

Pagal1
Posts: 66
Joined: Sun Jan 15, 2012 11:10 am

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Pagal1 » Tue May 08, 2012 5:13 am

SMR,
Share all your stuff, let tears flow when you are typing like are mine .. Nobody gets it other that all our wonderful sisters here.. Pls don't hold it back .... We r here to listen only if that's what u want.
If onc wants to start chemo thats gr8!! But wait at least 8 weeks or longer b4 avastin.. It's a good drug but our personal wild card .....I can explain more if u want.
Mojo,
I have no words to describe you .. You are still standing proud and have time 4 us .. I can definitely say u are a god-send for me.. I thank you from the bottom of my heart (or the heart of my bottom)...lol!! Like my teenager said the other day ...
Melanie, honey .... Don't worry abt time-lines.. Some oncs feel they need to give them.. I don't go by that... Get finances,will,etc in order.. Make a priority list... It helps me a lot.. Enjoy ur daughter'sgradn and hubby's speech .. Video tape him when he's in good spirits.. I'm going to start doing that....2
Tina... To lose a child is a greatest fear of any mother.. And I've already been thro' that.... Don't get stuck on the"why"...deal with the " how" ... Start looking for a job , now ... It's very important that u can work if u need 2
My hubby did the same chemo 3 yrs ago and wld start feeling btr by Sun.... And he worked the entire following non-chemo week.. Not the brightest idea for him.. But then he had a business to run and felt obliged to all his employees
After each round he mite take more days to recover ... Just keep him well hydrated and if u think he's doing too much.. Talk privately to the nurse ... And let the medical team b the bad cop .. We often 4get we r the only good cops they have :-)
Shital
Wife to wonderful husband
CC-6/09-age39
3C-SBTL colectomy, FOLFOX(12cyc)
7/11-cancer returns-Stage4-omental mets
6cycles FOLFORI & Avastin(3)
HIPEC & cytoredn-11/11
gastroparesis-6/12-still onTPN,liver & lung mets
Folfiri -2nd opinion now

Pagal1
Posts: 66
Joined: Sun Jan 15, 2012 11:10 am

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Pagal1 » Tue May 08, 2012 5:21 am

Pls post something ladies, even if it's just a hear.ifting quote.. Like this one.....

The most beautiful people we have know are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These people have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep, loving concern. Beautiful people do not just happen.
~Elizabeth Kubler-Ross

To all you beautiful ladies out there,
Shital
Wife to wonderful husband
CC-6/09-age39
3C-SBTL colectomy, FOLFOX(12cyc)
7/11-cancer returns-Stage4-omental mets
6cycles FOLFORI & Avastin(3)
HIPEC & cytoredn-11/11
gastroparesis-6/12-still onTPN,liver & lung mets
Folfiri -2nd opinion now

SMR
Posts: 631
Joined: Thu Feb 16, 2012 1:20 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby SMR » Tue May 08, 2012 7:25 am

Shital, that was a wonderful quote!

The latest thing that had me breaking down last night was that during my DH HIPEC the surgeon had to do an irreversible vasectomy. I'm 35 and have never had kids yet. We were married in July and hubby dx in October. Truth is we weren't really planning to have kids as DH has 3 who live with us full time ages 10-18. Interestingly just before DX we had started discussing the idea... Guess thats what a couple months of marriage can do! It really shouldn't matter bc we didn't plan to do it anyway, but the sense of finality was devastating. Especially coupled with the fear of losing DH and having no part of him left. Really nothing left at all. The biological mom who has been out of the country for six years now is suddenly stepping in and practically stealing the kids from us and it is quadrupling the anxiety.

More to come...

Thanks for the courage ladies. You are my rocks.
Last edited by SMR on Tue May 08, 2012 9:15 pm, edited 1 time in total.
DH DX 10/11 st IV unkown prmry
FFOX 12/11
HIPEC 3/12
FFOX 5/12
7/12 FFIRI
12/12 xeloda
1/13 resection
2/13 FFIRI
4/13 5FU/Avastin
9/13 recurrence, failed surgery
Abdominal fistula
11/13 gemzar, heart attack
12/13 Carbo
2/14 Radiation
3/28/2014 passed

lisamill39
Posts: 6
Joined: Fri Apr 13, 2012 3:06 pm
Facebook Username: lisamill39

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby lisamill39 » Tue May 08, 2012 6:45 pm

My first post. Not sure what to write. I have read so much on here and it breaks my heart to know what so many families are going thru. Husband has rectal cancer that has metast to the liver. He is not a candidate for surgery due to cirrhosis that we have been dealing with for five years now. Has completed radiation with xolada and has just started 5FU and oxzaliplatin. Next round he is scheduled for avastin also. So far everything is going well. My question is can the side effects start later or should everything stay the same.
Husband stage 4 rectal cancer
Not a candidate for surgery
Xeloda and 6 weeks radiation
5 FU & oxzaliplatin & avastin

MelanieB
Posts: 115
Joined: Tue Feb 07, 2012 11:47 am
Location: Vancouver, BC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby MelanieB » Tue May 08, 2012 7:37 pm

Welcome Lisa. :)
My husband has tolerated all the chemo quite well. The major side effect for him is fatigue which seemed to worsen over time. He had bad diarrhoea
with the Folfuri and Avastin but not so much on the Folfox and Avastin. When was your husband diagnosed and how are you all doing with it all?

Melanie
Husband (48) diagnosed Stage 4 May 19, 2011
Surgery to remove tumour
Mets to liver, lungs and lymphs
Completed 15 rounds Folfiri and Avastin
Started with Folfox 9 rounds
Aug. 27 stopped working
Given 6-7 weeks
Went to heaven Dec. 19, 2012

SMR
Posts: 631
Joined: Thu Feb 16, 2012 1:20 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby SMR » Tue May 08, 2012 9:30 pm

Lisa,

As has been said many times here... Welcome and I'm sorry you had to find us but glad you did.

For my husband, the effects worsened with treatment, but didn't become unbearable. The cold sensitivity and loss of taste/metallic taste were his biggest problems aside from fatigue. Those side effects all diminished once he stopped the chemo. At this point he has completed three months of FOLFOX before he had a one month break to prepare for surgery. He will be starting back again within the next few weeks. I'm unsure whether his side effects will pick up where they left off, start mild again, or start significantly worse since he is just coming off major surgery. I suppose we will find out soon.
DH DX 10/11 st IV unkown prmry
FFOX 12/11
HIPEC 3/12
FFOX 5/12
7/12 FFIRI
12/12 xeloda
1/13 resection
2/13 FFIRI
4/13 5FU/Avastin
9/13 recurrence, failed surgery
Abdominal fistula
11/13 gemzar, heart attack
12/13 Carbo
2/14 Radiation
3/28/2014 passed

lisamill39
Posts: 6
Joined: Fri Apr 13, 2012 3:06 pm
Facebook Username: lisamill39

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby lisamill39 » Tue May 08, 2012 9:34 pm

Routine six month MRI in July 2011 showed two lesions on the liver which were thought to be primary liver cancer. They were on the top of lobe and could not get a biopsy. Treated liver one time with chemoembolization and two weeks later he started passing blood. This was in September. After an exam in the ER they found a huge mass in his rectum. Had another MRI in March that showed a lot of new lesions on the liver. They were able to do biopsy on these and determined it was actually rectal cancer that had spread.
Husband stage 4 rectal cancer
Not a candidate for surgery
Xeloda and 6 weeks radiation
5 FU & oxzaliplatin & avastin


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