Looking Ahead

airborne72
airborne72 Member Posts: 303 Member
in Colorectal Cancer #1

I am five days past my rectal resection surgery and slowly, but steadily, regaining my mojo.  Instead of focusing, dissecting, analyzing, fixating on the present, and some of its unpleasantries, I prefer to look ahead to the next event in this cancer challenge - mop up chemo.

My oncologist told me that he recommends six 2-week cycles of 5Fu administered through a port, which was inserted during my recent surgery.  He said that the first two days of the cycles involve the injection followed by 12 days of recovery.

I am curious as to what physical patterns others experienced during this regimen.  How did the liquid 5Fu affect you?  Fatigue and nausea?  When?

I may have the opportunity (honor) to be the primary care taker for my brand new granddaughter for a couple of days each week beginning within the month.  I want to know if I will be physically capable to do so.

Jim

Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited October 2017 #2
    Treatment

    Glad to hear that you are done with surgery - that in itself is a great thing.  Mine for rectal cancer was one day infusion with two days on the pump.  Folfox was also my cocktail.  The oxi is a very powerful drug and can cause terrible sensitivity to cold.  Be careful with the fridge and don't drink ice water.  The first couple treatments are tolerable but the more you get the more accumulation you will experience.  When you get more treatment it will tend to take longer to recoup after.  If you are on oxi it will be longer in between times when you can tolerate cold.  Towards the end it might be that you experience the cold sensation from the beginning of treatment until the next.  Be careful of any tingling in hands and feet.  If it becomes intolerable tell your doctor as it can become permanent and sometimes irreversable.  They can reduce treatment.  Each one is different on what you can tolerate so just take one day at a time.  Fatigue and loss of appetite can also happen.  Hope your journey is a breeze.

    Kim

  • darcher
    darcher Member Posts: 304 Member
    #3
    When I was on xeloda which is

    When I was on xeloda which is supposed to be the pill form of 5FU  it would tire me out and it got progressivily more instense as time went on.  That plus brain fog and slight vision depervation is about the extent of it.  Stress will get amplified and you may end up puking over not so significant things.  Keep a trash can close by the toilet.  In my case it happened 3 times while sitting. 

      Like yourself, I was told once the surgery is done I'll be getting a port of something.  It's folfox,  folfu\iri, or something like that.  I can't remember what they called it now.  That's way off in the distance (cancer wise) so I didn't pay much attention when the doctor said its name.  I wonder why it's done via port versus a pill.  Kinda strange to me but I'm not a doctor so I'll just follow orders.  

  • Mikenh
    Mikenh Member Posts: 777 Member
    edited October 2017 #4
    I like your approach on

    I like your approach on planning for the future. I'm curious as to why 5FU and not XELOX (which is Xeloda + infused Oxi). I thought that you've already had Xeloda for pre-surgical chemo so you should be used to it. The difference is that the Oxi infusions are only 30 minutes instead of having to carry around the pump for two days.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #5
    My advice

    is to play it by ear. 

    There are so many possibilities with any kind of chemo, as you are aware. 

    Taking care of your little grandbaby would be such a joy, a real lift to the spirits, but I would commit to it only if the parents know that you can back out at any time. 

    I would be very cautious about taking care of a brand new baby with some of the side effects that can come from 5FU and any other chemo they may add to the cocktail. 

    For me, I couldn't hold a knife or fork, let alone a baby. I dropped so many things (yogurt was the worst - it went everywhere) due to the cold sensititvity and then the neuropathy. 

    I also had chemo brain. I couldn't think straight and I also couldn't see straight - I lost my peripheral vision and wrecked our car. By the end of treatment, I lost my balance and had to use a walker (I was on FOLFOX with the 5FU pump for 46 hours).

    Fatigue was an absolute killer. The only way I could describe it, when it was at its worst, was that I felt like a balloon that was deflating. I remember once being at the kitchen sink when it hit. It LITERALLY felt like my body was deflating. I tried to make it to the couch, and ended up crawling. I even touched my body all over, because I honestly felt like I was flat. 

    While it is true that I suffered tremendously through my chemo (and radiation) treatment, others whipped through it, working all the way. The fact is, until you go through it, you won't know how it is going to affect you personally. 

    So, long story short, I say looking after the grandbaby would be fantastic, just know that, sometime during treatment, you may have to forego the pleasure until a later date. 

    I am sorry if this post is pessemistic, but I can only be truthful from my personal prespective. 

    I wish you all the best in the world, as you move forward. 

    Tru

  • airborne72
    airborne72 Member Posts: 303 Member
    #6
    Sergeant Friday

    Those of us who are enjoying our retirement years (thank you rectal cancer for sharing the experience) are old enough to remember the 1950's TV show "Dragnet" with Sergeant Friday.  I have never forgotten his line..."just the facts Mam, just the facts."

    Tru, you provided just the facts and that is what I am seeking.  Thank you for being honest.  It is my belief that pessimism and optimism are encompassed by realism.  How one defines an event is dependent upon a myriad of inputs.  Some appear to be pessimistic while others are optimistic.  I prefer to be realistic at first, and then let those myriad of inputs sway it towards pessimistic or optimistic.  (I just read this again and realized that I need to back off the orange juice.)

    My greatest concern is whether or not I will be able to care for my granddaughter.  I have a tendency to let my alligator mouth overload my canary butt (which is now an idle orifice) and I was fearful that I might not be able to follow through.  All other events during my scheduled infusion period can be managed (Thanksgiving, Christmas, New Years, 4 family birthdays, Alabama's recovery of the national title, etc.).

    Talk about pessimism, today could be another Black Monday on Wall Street!  I will let someone else worry about financial management today.  I am working on ileostomy management.

    Jim

     

  • airborne72
    airborne72 Member Posts: 303 Member
    #7
    Mikenh said:

    I like your approach on

    I like your approach on planning for the future. I'm curious as to why 5FU and not XELOX (which is Xeloda + infused Oxi). I thought that you've already had Xeloda for pre-surgical chemo so you should be used to it. The difference is that the Oxi infusions are only 30 minutes instead of having to carry around the pump for two days.

    Formulary

    Mike: I remember distinctly that my oncologist said 5Fu liquid, but after that I may have not heard anything else.  It could be a cocktail.  I need to verify.  Plus, I need to get on the phone today and track down my path report.  Kind of important information for someone who just endured a resection, which is why the surgery was performed to begin with.

  • Mikenh
    Mikenh Member Posts: 777 Member
    #8
    airborne72 said:

    Sergeant Friday

    Those of us who are enjoying our retirement years (thank you rectal cancer for sharing the experience) are old enough to remember the 1950's TV show "Dragnet" with Sergeant Friday.  I have never forgotten his line..."just the facts Mam, just the facts."

    Tru, you provided just the facts and that is what I am seeking.  Thank you for being honest.  It is my belief that pessimism and optimism are encompassed by realism.  How one defines an event is dependent upon a myriad of inputs.  Some appear to be pessimistic while others are optimistic.  I prefer to be realistic at first, and then let those myriad of inputs sway it towards pessimistic or optimistic.  (I just read this again and realized that I need to back off the orange juice.)

    My greatest concern is whether or not I will be able to care for my granddaughter.  I have a tendency to let my alligator mouth overload my canary butt (which is now an idle orifice) and I was fearful that I might not be able to follow through.  All other events during my scheduled infusion period can be managed (Thanksgiving, Christmas, New Years, 4 family birthdays, Alabama's recovery of the national title, etc.).

    Talk about pessimism, today could be another Black Monday on Wall Street!  I will let someone else worry about financial management today.  I am working on ileostomy management.

    Jim

     

    I don't think that we'll have

    I don't think that we'll have a Black Monday today but I'm watching the market. I've been struggling with a Windows performance problem on my trading system that runs in a Virtual Machine. The display has 67 real-time charts covering indexes, ETFs and individual stocks from a variety of sectors. I'll send you a note if we crash so that you don't have to worry about it.

  • Joan M
    Joan M Member Posts: 409 Member
    #9
    Jim,

    Jim,

    I watched my 4 year old grandaughter while on the folfox chemo for 4 months.  She even went to the infusions with me a couple of times.  The nurses got a real kick out of seeing her.  She's in kindergarten now and I watch her baby sister who is 9 months old now.  It's a realy joy seeing their happy faces and keeps me feeling positive about life.  

    Joan

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