my wife and i are scared

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kiwiinoz
Posts: 1170
Joined: Thu Jan 03, 2013 11:44 pm

Re: my wife and i are scared

Postby kiwiinoz » Wed Oct 30, 2013 10:58 pm

Late to get on this thread. I'm with my wiser mate horizon on this and have never heard of this at all. Perhaps the oncological nurse you were talking to heard about your kids, and took it upon his or herself to offer you some advice, far beyond the realms of what a normal individual, or the clinic itself did.

Yes, Chemo is nasty stuff, but it is nasty stuff that has been around for 60+ years, has a proven, well documented track record and saves lives. I would not hesitate to recomend chemo as a strong and valid option, and I did not have any hestiation about signing on for it. In fact, I was annoyed that I had to wait 7 days to "officially consider" the fact that I was already going to say yes.

If you have kids, it is even more reason to take the chemo offered, in whatever format works for you
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - August 2020
Port Out 26 March 2015

anthony1
Posts: 5
Joined: Wed Oct 30, 2013 12:08 pm

Re: my wife and i are scared

Postby anthony1 » Thu Oct 31, 2013 6:17 am

I appreciate everyones posts. We called the xoloda hotline about the no skin contact issue and the nurse said that it was not cited in the original clinical trials. We are definetly goingto ask the onc where he got this information. I am just desperate for some support/encouragement. We are a young family, im 30 and we have 4 children. 5yo, 4yo, 2yo and n8 week old. I have been having anxiety and depression issues and have been distraught over how this will play out. Obviously i havent been taking it as seriously as i should or misunderstanding the gravity of the situation.

We were ok until we heard the no skin contact thing from the onc. As for support, we have our parents and church but coordinating peoples schedules has been a challenge. My wife and i often feel like we are the last on everyones mind. I shouldnt expect everything to be so convenient but sometimes i just feel like people dont get how scary this all can be. I feel like our plans in life are on hold and its been hard for me to have hope for the futute when everything seems so uncertain and difficult. How do i stay strong when i feel like a wreck inside?

michelle c
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Joined: Wed Dec 02, 2009 3:58 am

Re: my wife and i are scared

Postby michelle c » Thu Oct 31, 2013 7:49 am

I was absolutely dreading chemo but my onc suggested it for me. We never thought about me not doing chemo once we heard what he had to say. We knew I had to do it so we just got on with it. Family and friends helped me especially on my chemo weeks, and my husband did a lot too. My husband worked so he was unable to take me to chemo but would occasionally be able to pick me up. A family member or friend would always take me to chemo and stay with me. My mum would take the kids to school and my husband would pick them up. I know it sounds overwhelming and scary but you can make it work if you want to. Six months really does go fast in the scheme of things. I took one week, or even one day, at a time. You have to work together and your wife will need your utmost support to get through this. It won't be easy but it can be done! Good luck and best wishes to you both with your decision.
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

LabLover
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Joined: Tue Sep 24, 2013 7:50 pm

Re: my wife and i are scared

Postby LabLover » Thu Oct 31, 2013 10:28 am

I wanted to add if your wife does do oral xeloda only, it won't require any child care scheduling. She will just take the pills at home teice a day. I did xeloda and radiation and was able to work and handle car pools, practices, and games from my 2 very busy children. I had no side effects from the chemo. The only issues I had were from the radiation and that was manageable.

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very worried husband
Posts: 130
Joined: Mon Mar 28, 2011 1:20 am

Re: my wife and i are scared

Postby very worried husband » Thu Oct 31, 2013 11:20 am

Brother! Cancer is a cruel disease. It does not give chances. Fight with whatever you have. You have a good chance of beating Stage 3.
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)

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chrissyrice
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Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: my wife and i are scared

Postby chrissyrice » Thu Oct 31, 2013 1:34 pm

Yes do the chemo.... I had a hard time, but I am still here 3 years + and so healthy. The chemo will increase survival odds... Just ask for help with managing the side effects.
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

anthony1
Posts: 5
Joined: Wed Oct 30, 2013 12:08 pm

Re: my wife and i are scared

Postby anthony1 » Thu Oct 31, 2013 4:13 pm

LabLover wrote:I wanted to add if your wife does do oral xeloda only, it won't require any child care scheduling. She will just take the pills at home teice a day. I did xeloda and radiation and was able to work and handle car pools, practices, and games from my 2 very busy children. I had no side effects from the chemo. The only issues I had were from the radiation and that was manageable.


this seemed like the best option once she had the reaction ixy. i talked to the onc today on the phone. he was reasearching if there was a risk of chemo seeping theough the pores of her skin. he said he could not find anything. idk if my wife misheard him bc she was distracted or emotional? i am insisting she does chemo nor matter what. she keeps stressing about the kids. i told her this morning, no matter what we will get theough this, i dont care how scared or depressed or anxious i get, i need her in my life.

weisssoccermom
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Location: Pacific NW

Re: my wife and i are scared

Postby weisssoccermom » Thu Oct 31, 2013 7:44 pm

It is very common for a newly diagnosed cancer patient to misunderstand or not hear everything the doctor says. It doesn't imply that the patient is anything but totally NORMAL! Let's face it - getting that cancer diagnosis is a shocking discovery and initially, at least, makes all of us anxious which, yes, does affect what we actually hear or believe we hear.

I suspect what your wife 'may' have heard was that Xeloda does have a higher tendency to cause hand-foot syndrome....which simply means that the skin on the bottom of the feet and on the hands can get extremely irritated, can peel and be sometimes very uncomfortable. How severe the condition is just depends from one person to another, but....in no way does it mean that the chemo seeps from the skin.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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horizon
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Re: my wife and i are scared

Postby horizon » Thu Oct 31, 2013 8:17 pm

kiwiinoz wrote:Late to get on this thread. I'm with my wiser mate horizon on this and have never heard of this at all.


I don't know about the wiser part! :D
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?

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horizon
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Re: my wife and i are scared

Postby horizon » Thu Oct 31, 2013 8:19 pm

anthony1 wrote:We were ok until we heard the no skin contact thing from the onc. As for support, we have our parents and church but coordinating peoples schedules has been a challenge. My wife and i often feel like we are the last on everyones mind. I shouldnt expect everything to be so convenient but sometimes i just feel like people dont get how scary this all can be. I feel like our plans in life are on hold and its been hard for me to have hope for the futute when everything seems so uncertain and difficult. How do i stay strong when i feel like a wreck inside?


I was a mess when I was first diagnosed. I found that everything good AND bad that happened to me wasn't something I predicted. I wasted a lot of time and caused myself a lot of stress worrying over things that didn't apply to me. The future is uncertain but try to take it one day at a time.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: my wife and i are scared

Postby michelle c » Fri Nov 01, 2013 3:37 am

I understand completely when you say that your wife is stressing about the kids. I did too, but I did chemo for kids if that make sense. Chemo was to increase my survival statistics and that was important to me. I want to be around as long as possible for my kids. I thought of it this way rather than the impact on them while I was undergoing chemo. Of course, there are no guarantees, unfortunately, but six months is not too long, if it can add years to her life. A cancer diagnosis is so overwhelming and even more so when you have young children. I completely understand and can relate to this. The pills sound much more doable. We are here for you and your wife, and will offer as much support and encouragement as we can.
All the best to you both.
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

anthony1
Posts: 5
Joined: Wed Oct 30, 2013 12:08 pm

Re: my wife and i are scared

Postby anthony1 » Fri Nov 01, 2013 6:28 pm

my wife has decided to take the xeloda pills. i hope she tolerates them well. any tips, especially as we head into winter?

justin case
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Location: Katy, Texas

Re: my wife and i are scared

Postby justin case » Fri Nov 01, 2013 6:38 pm

Winter where. Where I live winter is usually mild and no problem. As a matter of fact I don't know if winter causes a problem with Xeloda :roll:
Just saying,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

anthony1
Posts: 5
Joined: Wed Oct 30, 2013 12:08 pm

Re: my wife and i are scared

Postby anthony1 » Fri Nov 01, 2013 11:03 pm

justin case wrote:Winter where. Where I live winter is usually mild and no problem. As a matter of fact I don't know if winter causes a problem with Xeloda :roll:
Just saying,
Michael


upstate ny. right on lake ontario, north of syracuse. isnt there cold sensitivity issues with xeloda?

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horizon
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Re: my wife and i are scared

Postby horizon » Sat Nov 02, 2013 1:30 am

anthony1 wrote:
justin case wrote:Winter where. Where I live winter is usually mild and no problem. As a matter of fact I don't know if winter causes a problem with Xeloda :roll:
Just saying,
Michael


upstate ny. right on lake ontario, north of syracuse. isnt there cold sensitivity issues with xeloda?


The Oxi is what causes the cold sensitivity.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?


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