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DD3's picture
DD3
Posts: 44
Joined: May 2013

I have been "lurking" around here for a bit. Some really great information and most of all people. Wow. Just wow is all I can say.

My wife (45 yrs old) was diagnosed with Stage IIIA CRC. She had 6 lymph nodes that tested positive. Well, getting ahead of myself here.

She was diagnosed early Dec. 2012. She had been the picture of health her whole life. Then bam, we were both knocked over by this. I (husband) was completely devastated. Scared doesn't begin to describe what I felt. Anyways...

She has had 28 treatments of radiation/chemo (5FU). Then off to surgery where they did a colon resection and removed 11 lymph nodes of which 6 tested positive. Surgeon looked around and seen no other signs of cancer or on any scans afterwards (I bit of relief). We now have "tempy." Who is tempy you ask? It's our name for her temporary illeostomy. We will have to deal with tempy until the next chemo cycle is done.

Our next step is Folfox treatment scheduled for 6 months. Oh boy. Here come the questions... I understand everyone reacts different to the treatment.

-- The nurse practioner said she will be sensitive to cold. After reading the posts, I agree. But, she said my wife would not want to be around air conditioning or fans??? That sensitive??? Anyone on here experience this?

-- What about her hair? Expect to lose it? Do I need to take her wig shopping?

-- Anyone on here go through Folfox with a colostomy/illeostomy bag? Worried about diarrhea and or constipation.

-- Does the fear/anxiety/anger/fog for a care giver ever subside?  I know this is probably a selfish question.

I'm sure I will have more questions as we get closer to treatment or going through it.  Especially from a care giver standpoint. Please bear with me....

 

 

 

 

jen2012
Posts: 1251
Joined: Aug 2012

Welcome..sorry about your wife. My husband was diagnosed stage 4 in august...46 yrs old at the time. Hard for me to say about ac since he did folfox over the winter....but he is still feeling cold even when im hot, so i wouldnt be surprised if fans and ac bother her. Seems most people do not need a wig. My husband just had surgery couple of weeks and has a temp ileostomy. So i cant really answer that either...tho my husband did end up back in the hospital with dehydration and now needs to take immodium before meals and at bed.

For me the fear/anger/anxiety has not subsided...i hope it does at some point.

Not much help unfortunately ...but you are not alone.

DD3's picture
DD3
Posts: 44
Joined: May 2013

My wife too ended up back in the hospital with dehydration due to the illeostomy learning curve.  She takes 4 immodium a day to help with the consistency.  Working great.  But, the Folfox has me worried. 

jen2012
Posts: 1251
Joined: Aug 2012

My husband really didnt have any stomach issues with folfox. He did have some constipation in the beginning but we figured out that was due to the steroid...they adjusted it and he was okay. Hopefully your wife will tolerate it well also.

db8ne1's picture
db8ne1
Posts: 92
Joined: Feb 2013

Sorry to hear about your wife and that you joined our club - but welcome anyway!

It sounds like your wife and I are on the same path - although I didn't need a temp ileostomy - so, my apologies - I can't help there.  But there are MANY on this post that CAN and will!

I was diagnosed 12/7 (T3N1M0). Daily radiation and daily chemo (5FU) 1/7 - 2/13 to shrink the tumor (successfully!). (Port installed on 1/7 too.  Port is no problem. Carrying the chemo pump around was an inconvience - but not bad).  Surgery on 4/11 to remove colorectal tumor and 15 nodes.  Got a "twofer" as they made a last minute decision to remove my grapefruit sized uterus and one fallopian tube damaged by radiation. (I had numerous, large fibroid uterine tumors - that I've know about for a long time). Removing the oversized uterus gave the surgeon clear access to the colorectal tumor.   Path came back clean. Yeah!  Radiation worked!

How is your wife healing?  I seem to be having some issues with sharp pain to the right of my inicision.  The incision is healing well and is fine - but the internal pain limits my daily functions.  Doesn't hurt to touch - it's all internal.  Any thoughts?

I start FOLFOX (5FU, Leucovorin, Oxilaplatin) next on 5/15 - 10 rounds every 2 weeks.  I was told due to the 5FU I received with the radiation that I may not need the full 12 treatments.  Yeah!  Not looking forward to it.  I'm still out on short term disability for the surgery.  I worked full time during chemo/radiation and plan to work full time during FOLFOX (I hope).  Not too encouraged after reading about the possible side effects, though.

Unfortunately, everybody reacts differently to different drugs.  I hope her side effects are minimal. 

Keep us posted and wishing you the best!

J

DD3's picture
DD3
Posts: 44
Joined: May 2013

My wife had internal pain after surgery too.  We ended up in the ER over it.  Docs did a CT scan and she had fluid build up between her bladder and uterus (sp?).  Regime of anti-biotics seems to have done the trick.  She too had discomfort around her inicision.  Kind of has subsided with time.  Not saying she is 100% back to normal.  But, considerably better. 

She went back to work (from home).  We are very, very anxious about the FOLFOX and work and the overall general side effects. 

herdizziness's picture
herdizziness
Posts: 3492
Joined: Apr 2010

Just the fan on one night and the window open let too much cool air in and I lost my ability to breathe, it actually takes your breath away, this happened twice to me and is an unpleasant as all get out feeling, you think you're going to die.  I did breathe again, they told me I would at the Chemo 101, but it is scary, so yes, just for that reason uncomfortable around cool air.  Plus the pins and needles feelings when touching any thing cold is also unpleasant as well as even walking near the cooler sections of the grocery store.  Everyone reacts a bit different but the majority feel quite uncomfortable and beyond that with the cool air.

she will probably not lose her hair on this combo, some thinning, but usually not hair loss.  I went through a year of the Oxy and did not have to worry about a wig (Irenotecan is a whole different story).

glad your there with her.

Winter Marie

Lorikat's picture
Lorikat
Posts: 566
Joined: Jul 2011

DD3...  I asked your question of my husband who is/was my caregiver and will try to repeat his answer:  

He stated that his life changed majorly with my illness.  Not only did he hurt with me but was sometimes overwhelmed trying to pick up he slack for things I was no longer taking care of.  ie:  I have always paid the bills and remembered birthdays (!). He took over the housework and did the laundry.  He listened to our children and answered their questions.  And yes, he was scared, angry and sometimes just plain old tired.  (he's awesome, by the way)

Fast forward 18 months and the adrenalin has receded and while he still feels these things sometimes he's learned to live a good life around them, as have I.  He will always be nervous when scan time comes around.  It is NOT selfish to ask this question.  This will be one of, if not the, hardest thing you will every accomplish.

Remember:  Take care of yourself as well as your spouse.  Accept help when it's available.  Find someone to talk to.  Blessings...

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

You have found a safe haven where you will find caring and support,along with a wealth of knowledge and personal experiences. It is overwhelming and lots of information to process. Everyone reacts a little different to the chemos...I was on a little different regimen than your wife will be on...oxy, xeloda and avastin, but I believe oxy is in both mixes. Chemos have cumulative side effects, so all side effects may not appear right away or maybe not at all. 

On oxy, I did have the cold sensitivity, and yes on the air conditioning and fans. My hair thinned quite a bit, but I didn't lose it all(maybe 50%). But definitely wait and see.....or the ACS gives you a free wig. Since I only lost 50% of mine, i got a wiglet (clips on your hair).

Thinking of you and your wife~ Ann

 

 

LivinginNH's picture
LivinginNH
Posts: 1337
Joined: Apr 2010

Hi,

It's late, so I'll only answer one question for now...

-- Does the fear/anxiety/anger/fog for a care giver ever subside?  I know this is probably a selfish question.  

    Fear - No

    Anxiety - No

    Fog - No

     Anger -  Try to focus on replacing this one with LOVE - you don't have time for anger now, let it go - why let anger take up space in your head?  Cancer doesn't care that you hate it. Instead, try to replace that negative feeling by showing and telling your wife every day how much you love her.  Do special little things for her, especially since she'll be sensitive to cold - warm up a bath towel and/or a robe in the dryer before she gets out the shower; have her slippers ready when she gets out of bed or the tub...they make a difference, and you'll also feel better about being able to help her, at least a little bit.  (That's one reason why you're angry, you feel helpless that you can't cure her, I know....)

Take care,

Cyn

Annabelle41415's picture
Annabelle41415
Posts: 4399
Joined: Feb 2009

Can sense your worry in your words and it sounds like you will be a wonderful caregiver, especially since you have found this board and you are wanting to find help for your wife.  You will be going through emotions that have never become you before, elation, deflation, angry, optomistic, etc but want you to know that you can find help on this board to help you get through most of it.  The Oxy (sensitive drug) is a very nasty drug.  Don't let your wife even get in the refrigeration section of a grocery store without gloves, or go in the fridge.  It's like drinking shards of glass if drinking something cold.  I've not read what others have responded so maybe I'm a repeat but this is what I've experienced.  My hair thinned but never left and my hair is thin by nature and no one knew it so I'm sure she will be fine.  My treatment was done with a temporary ileostomy and I'm glad it was as it was a relief to give my system a break and never experienced constipation but Ileo's are different than colostomy.  Wishing you the best for your wife and hoping that you continue to post updates.

Kim

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

I was diagnosed stage 4 colon cancer, spread to liver. I started Folfox in December 2012. This Friday will be number 12. I have a colostomy, which will be reversed June 17th. I have the cold sensation in my hands and throat. But, it usually is better the second week (tx every two weeks). I returned to teaching full-time this week and feel great. I had a PET scan three weeks ago and liver mets have shrunk. No sign anywhere else. I am thankful the oncologist showed me a different view of my first pet scan (Dec). If I had seen how bad my liver really was, I don't know how I would be doing. He knew what he was doing, and has been positive from the get-go. At school, I keep hunter's handwarmers available. I usually only need them the Monday after I get unattached from the pump (IV chemo Friday, home with pump for 46 hours). I put the handwarmers in my pockets, so if my hands get that sensation, I warm them up and the feeling goes away. Luckily my feet have been fine. I have not lost my hair.

My fiance was diagnosed with stage IV melanoma, so I guess u could say we are each other's caregivers. Knock on wood we are both doing very well!!!

Good luck to you,

Judy

LindaK.
Posts: 360
Joined: Apr 2013

Hello, my husband is currently in the Folfox treatment.  7 down, 5 to go.  He has stage II with successful colon resection in December (surgery before chemo).  He did pretty well with the first 5 treatments, but did have the extreme sensitivity to cold, which got longer and longer after each treatment.  He couldn't have anything out of the fridge, had to have all drinks at room temp or warmer.  The neuropathy in his hands and feet only lasted a few days after each treatment.  He had extreme constipation from the oxaliplatin which put him back in the hospital in late March with an obstruction which cleared itself with belly rest.  No more oxaliplatin for him, 2 treatments of 5FU only down and the side effects now are mainly fatigue and joint pain.  His hair has thinned a little.  He now takes a laxative, stool softener and fiber to keep things moving.  I am extremely lucky to have a job where I've been able to take the time off to be with him during both hospitalizations and for every treatment.  I just don't want to leave him.  I feel like I've aged 10 years in the past 6 months, the worry and fear have not subsided much.  On top of that add patience to your list as the caregiver.  My husband's normally happy disposition comes and goes.  Also the "chemo brain" he has is worse than dealing with my mother who has Alzheimers.  I have to be very careful what I say and push myself to be positive at all times and not complain about picking up the slack.  Every day when I get out of bed and feel tired or cranky, I have to remind myself that we have to beat this cancer and it helps me start my day.

Make sure you tell your oncologist about any side effects, they can adjust all the meds if necessary.  Hang in there.

DD3's picture
DD3
Posts: 44
Joined: May 2013

Hope everyone doesn't mind me reviving an old thread. Thought I would stop in a give everyone an update.

Last Wednesday we (me and my wife) well mostly her , started the Folfox treatment. Well, here we are today and things really couldn't be better. She has handled the treatment considerably well, I think. She got sick on me once Saturday and was pretty weak Sunday. However, today... She has bounced back. She went for her morning walk, did some chores around the house (against my wishes) but I let her go. Her energy level is great today. She is eating pretty regularly now. Food seems to taste okay. No nausea, neuropathy (sp?) or mouth sores. We still take fluids at room temp. So, as of now I got my fingers crossed, toes crossed, rabbits tail out, looking for a four leaf clover that our first treatment continues down this path. I know (or from what I can tell) all treatments seem to be different in regards to side effects. We will take one at a time.  Thanks for listening.

 

smokeyjoe
Posts: 1428
Joined: Feb 2011

Good to hear she's doing well.   I was told that things are cumulative, side effects would get worse as time goes on....but I have the opposite for whatever reason.  I had nausea the first treatments,  but treatment 5 went very well, very mild to no nausea.    I painted outdoors in the cold with gloves on since I had disconnect on Friday ... by today I only noticed cold sensitivity when I ran the hose on some grass seed.  I'm at work and feeling fine....  I don't have any experience with an iliomotomy though. 

Annabelle41415's picture
Annabelle41415
Posts: 4399
Joined: Feb 2009

Thanks for the update and it's good to hear that wife is doing good.  If she feels like doing chores or shopping, etc. let her do to her ability.  Sometimes just doing normal things is the best cure of all.  Glad that she is eating well too, just remember to keep lots of fluids in her.  Hope all continues to go well.

Kim

Trubrit's picture
Trubrit
Posts: 1699
Joined: Jan 2013

Most of us have differrent side effects, God bless those who have little side effects. 

I hope you wife has few side effects, I've had 26.   I am done with my FOLFOX and onto raditation and 5FU. I'm hoping my side effects from the Oxaliplatin are less when I start.  

Be sure to keep a note book or two.  Keep note of everything your wife goes through, I take my vitals every morning.  Nothing is small or insignificant. You should hear some of the questions I have asked my medical team. 

I am so ready to be over this.  

You sound like a wonderful, loving  husband.  Be sure to keep your spirits up, it will help so much with her journey. 

Blessings!

LindaK.
Posts: 360
Joined: Apr 2013

That is great news that she is tolerating things well.  Just make sure she reports ANY side effects to the oncologist.  My husband had no nausea, in fact was always hungry (and still is).  Keep up the good work!!

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