Here we go...

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

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

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...

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

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

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 said:

A update

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.

 

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. 

DD3 said:

A update

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.

 

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!!