One down - 11 to Go

Dale423
Dale423 Member Posts: 8
edited March 2014 in Colorectal Cancer #1
Hope you all don't mind if I use this forum to get my experiences written down. It seems like a catharsis of sorts.

I am a stage III, had surgery, and put on the FOLFOX-6 regimen. By the time last Monday rolled around I confess to being VERY nervous. Once I was "hooked" up via port and the Oxy and Leucovorin were on their way in I looked around at all the other people and realized I was hardly the worst off. So many really, really sick people.

Somehow, it wasn't as depressing as I thought it would be. I'd describe it almost as "determined". Amazing. Anyway, made it through the infusion and got my pump hooked up. The nurse warned me that the Oxy would immediately cause the "cold" effect I've heard so much about. Naturally, being the dumb Irish idiot I am, I had to test it when I got home. I reached in the freezer and grabbed hold of a gallon of ice cream. Wow! Electric shock right up the arm. Big time.

Pump wasn't too bad except for the little camera type shutter sound every 30 seconds. But I got used to it.

Went back to the Center to get the pump removed on Wed. afternoon and felt pretty darn good. I talked to another patient while waiting and he said he was on his 7th treatment and that you start to run down as the treatments progress. I'm ready for that; I think. Right now I feel very fortunate that I seem to be tolerating it ok. I did get a little tired for a couple of days but I almost blame it on the relief of getting the first treatment over with.

Port is still irritating me; even after three weeks. Is that usual? I can even still feel the sutures (that I'm sure were supposed to be hidden). My surgeon was the guy who used the hatchet to put it in and the nurse at the Center said she hates it when surgeons do it as opposed to the radiology intervention people. Seems she's right!

Well, thanks for letting me vent. You have no idea what this site has meant to me since all this started. It's a scary mess and it sure helps to know there are kindred souls out there.

Positive thoughts to all!

Dale

Comments

  • pink05
    pink05 Member Posts: 550
    #2
    Hey Dale,

    Glad to hear that you are tolerating the chemo well. My dad is getting the same chemo you are getting, except he just had avastin added. I was also worried about how he would tolerate the chemo (he is 76 years old) and the first onc we went to said my dad wouldn't be able to tolerate folfox. Well, he tolerated the first two treatments just fine. He has the cold sensitivity and mild nausea, but that's been all so far. He is actually on his 3rd cycle right now. The nurse practitioner told him after the first treatment that whatever side effects he had after #1 would probably continue throughout treatment. She said that they usually don't change from the first treatment. I'm not sure how accurate that is because I have heard from other people that the side effects do get worse later on into the treatments. I'm sure you will be more careful the next time you reach your hand into that freezer!!! You are right about this site. It has really helped me get through all the roller coaster rides I've been going through with my dad. I've met so many people thanks to this site.

    God bless,
    -Lee-
  • KathiM
    KathiM Member Posts: 8,028 Member
    #3
    Rah! Rah! Keep up the great spirit!
    I was/am (?) a stage II patient, and had the "other" platin and 5FU. Yeah, the pump took some getting used to....I got to the place that I could take a shower with it....hung it outside the curtain.
    Love the sharing, Dale, just wish you would have been there when I was making my journey.
    Yeah, there are some very PHYSICALLY sick people in the center...but, did you notice?.....their Spirit was WAY UP!!!! That hit me like a freight train....even the ones (like me, eventually...I'm a WIMP on chemo) that were the sickest could still crack a smile! (I got a paper ribbon that said "room comic" on it...LOL)
    Hugs, kisses to you,
    Please keep us up!
    Kathi
  • lfondots63
    lfondots63 Member Posts: 818 Member
    #4
    Hi Dale!

    Love the bit about the freezer. LOL. My kids think I'm kidding when I say it hurts to touch even something a little cold. It does get better some by the time I have to start my next treatment and then back to the rollercoaster. I am also on the folfox and get my 3rd treatment on Wednesday. My port is still "irritating". I have to watch my kids bumping it some. I have had mine for over 1 month so I guess it slowly gets better. I hope you didn't go home and gulp down a large glass of ice water too!!!! That would really hurt. I hate drinking everything warm but I'm working around it. I said I can't wait for summer, I'm just going to put my waters outside so they are warm enough instead of putting in the microwave. Good vibes your way and don't worry about using this as a catharsis. This site is the best medicine in my opinion.

    Lisa
  • charelaine
    charelaine Member Posts: 36
    #5
    Dale,

    I also am a stage three. I haven't started my treatments yet. I start next monday. What is FOLFOX 6? I am going to be getting 5FU, leukovorian, and oxiliplatin. Is that the same thing? I do enjoy reading about the experiences of others. Maybe you and I can share our journey. Are you having radiation? I will be having four treatments of chemo, then 6 weeks of radiation while on a pump of 5FU only, then 8 more treatments, at least. I am going for regular treatments every other week. Is that the same for you? I am glad to know that I am not the only person that the port bothers. It is still sore if I roll over after sleeping on that side, and if anyone bumps it. It has been over a month. How do you manage you pump and the shower? Can you get the port wet? Also, are you working through this? I have a very physical job, and cannot fathom trying to work with the pump. E-mail me if you would like. It sounds like we are at the same place.
  • finner
    finner Member Posts: 230 Member
    #6
    Dumb Irish idiot?????
  • Dale423
    Dale423 Member Posts: 8
    #7
    finner said:

    Dumb Irish idiot?????

    No offense. My brother and I also sun burn very easily and often blame it on "cheap Irish skin". But I'm very seriously proud of my heritage and have been to the ole sod several, very enjoyable times.
  • Susanbm
    Susanbm Member Posts: 61
    #8
    charelaine said:

    Dale,

    I also am a stage three. I haven't started my treatments yet. I start next monday. What is FOLFOX 6? I am going to be getting 5FU, leukovorian, and oxiliplatin. Is that the same thing? I do enjoy reading about the experiences of others. Maybe you and I can share our journey. Are you having radiation? I will be having four treatments of chemo, then 6 weeks of radiation while on a pump of 5FU only, then 8 more treatments, at least. I am going for regular treatments every other week. Is that the same for you? I am glad to know that I am not the only person that the port bothers. It is still sore if I roll over after sleeping on that side, and if anyone bumps it. It has been over a month. How do you manage you pump and the shower? Can you get the port wet? Also, are you working through this? I have a very physical job, and cannot fathom trying to work with the pump. E-mail me if you would like. It sounds like we are at the same place.

    Charelaine, FOFOX6 is the acronym for the 3 drugs leucovorin(FOlinic Acid), Fluorouracil (5FU) and OXaliplatin. The number six means it is the 6th variation. I am Stage III and finished my 6months of chemo in 10/05. I had a treatment every other week for six months. I did not have radiation. It took me over a month to get accustomed to the port. My infusor pump was plastic and looked like a large syringe. It was a little tricky taking a shower but I figured it out. As far as working, I usually took off the Wed, Thurs & Friday of the week I received my treatment but by the Monday I was able to go back to work. My job is not physical so that may have had something to do with being able to work. I was still pretty "foggy" on the Monday and Tuesday but by Wednesday felt pretty good. Good luck and let me know if I can answer any questions.

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