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It Is Official: Stage IIIC and FOLFOX Starting Soon

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  • Carpe Diem
    Carpe Diem Member Posts: 1
    Time to Jump In

    Okay, so on Decemeber 6, 2014 I was sitting at work, minding my own business, and boom, I was transported to a new, frightening world.  I couldn't seem to get past intense nausea.  I thought it would pass, but nope.  I ended up in the ER December 7.  Ultra sound, CT scan, colonoscopy, colon resection.  What?  Cancer?  Me?  Crazy, right?  So here I am.  Stage 2 diagnosis, 3 rounds of FolFox down, 9 to go.  25% complete.  Fatigue like crazy, neuropthy, feeling icky.  But hey, I am not going to let this beat me. 

    I look forward to meeting you all, learning from you, supporting you in health. 

  • Trubrit
    Trubrit Member Posts: 5,536 **

    Time to Jump In

    Okay, so on Decemeber 6, 2014 I was sitting at work, minding my own business, and boom, I was transported to a new, frightening world.  I couldn't seem to get past intense nausea.  I thought it would pass, but nope.  I ended up in the ER December 7.  Ultra sound, CT scan, colonoscopy, colon resection.  What?  Cancer?  Me?  Crazy, right?  So here I am.  Stage 2 diagnosis, 3 rounds of FolFox down, 9 to go.  25% complete.  Fatigue like crazy, neuropthy, feeling icky.  But hey, I am not going to let this beat me. 

    I look forward to meeting you all, learning from you, supporting you in health. 

    Welcome to our world

    May I suggest you open a brand new thread, that way we can all welcome you here without hijacking NH's thread 

    You've found a great place, and it sounds like you are going to fit right in. There's nothing better than a bit of humour to make life a little better. 

    Sue - Trubrit

  • NewHere
    NewHere Member Posts: 1,350 **
    MAliceR said:

    Neuropathy and Working during treatment

    Hi All, 

    I am still new here, and learning my way around, but wanted to add a few thoughts to the conversation chain.

    First off, my best wishes to all of you in chemo treatment and recovering from surgery. It can be overwhelming waiting for next steps and treatment. Don't forget to step away from it any time you can and find a reason to smile. 

    So many of us end up with neuropathy from chemo. My first trip through, which took 8 months, I had severe neuropathy in my hands and feet/legs up to my knees. I was worried that I might not be able to walk by the time my treatment over. As soon as chemo was over my oncologist referred me to Acupuncture and I went once a week for 28 sessions. I have ended up with no lasting neuropathy in my hands and my feet are only numb at the ball and the very tips of my toes. All the rest of the feeling has come back. Push for Acupuncture if you can. It is also good for stress. I also discovered walking really helps. Even when in chemo, if you can walk a bit, it keeps the blood flowing and helps with the numbness. 

    As for the port. It is worth havng and a real blessing. I did my first trip through chemo with arm IV's. Let me clue you, the pain in my arm was often worse then the chemo. When I went through my 2nd round of chemo my new oncologist (mine left my network) wouldn't even hear of chemo without a port. I have had no trouble with it. the placement was not a big deal. I was sore for a few days, but after major abdomonal surgery, a piece of cake. The Dr who placed it had me wear my bra and marked the edges so the straps or cups didn't hit the port. Since I finished chemo 7 months ago, I have even traveled with it. TSA seems to know what it is and doesn't even blink. I didn't find that to be the case entering France, they really gave me a once over, but I took paperwork from my Dr and that seemed to do the trick. Having it flushed every 4 weeks is a pain when you are finished with treatment. My oncologist says if my next CT scan comes out clear she wants it removed. I have no experience with the removal to share, I am hoping I will be able to report on that in a few weeks if my tests are clear.

    Lastly, As for working and blood counts. During my first round with chemo, I worked. My office was in a teen health clinic. I was around sick kids every day. I never caught a cold or anything they brought to the clinic. I was careful, washed my hands and kept an air purifier in my office.  I was retired when I went into my 2nd bought of chemo. But I continued to be out and about, having lunch with friends, going to public places as soon as I got over the treatment Kermit Days. Again I was really careful but I found getting out helped my mental state. 

    The day I started chemo, my dearest friend brought me a paper chain she made. There was a link for every day from the start of chemo to the end. Each morning I got up and tore off a link. I could watch my progress and cheer myself on as the chain got shorter and shorter. It was a wonderful way to focus on the end of treatment. It also quietly reminded me she was with me every step of the way. 

    Blessings everyone,

    Mary

     

     

     

     

    Thanks

    The neuropathy seems to be the big one from all of this as possible (likely) outcome.  So keeping an eye out for it.  Acupuncture is something that is on my list. Sloan is good in having intergative medicine and I am happy to give everything a shot to help.  I am going to push for it, though I think that if I want it, can just do it.  They have run some studies there showing the benefits for various cancer.

    Going to also try to do some exercise from the get-go.  Right now it is limited (just four weeks out of surgery) and just had my port put into today.  The anesthetic has worn off and it is actually kind of sore and feeling it in my neck.  I thought for sure after the colon resection, that this would not even be noticed.  :)  I am guessing it will be calmed down a bit by the morning, but two more scars have been added to my collection.

    Got the low down on the flushing every 4 to 6 weeks.  Cannot wait until I get to that point, chemo done and maintainance flushes until they take it out Cool

    I will be keeping an eye on my counts and how I feel.  I am hoping to still be able to do the volunteer EMT thing at least every couple of weeks if I can, blood counts and feeling well of course being in play.  

    I like the paper chain, very cool of your friend to do it.  I marked the chemo days on my calender and may do the X out or something to keep a visual track.  Thought the chain had to be fun (not sure if that is a proper word with all of this) but a nice guidepost and also knowing people with you.

    I am hoping to have stretches of good days during each two week period where I can go out, enjoy a meal and the rest.  Right now as I recovered from surgery and moved off the low residue diet (Dts said whenever I was ready to do what I want).  Still generally trying to watch it, but adding back some bits of real food, such as a bit of fresh vegatables instead of canned at a meal, really does help me feel normal.  

  • NewHere
    NewHere Member Posts: 1,350 **

    Time to Jump In

    Okay, so on Decemeber 6, 2014 I was sitting at work, minding my own business, and boom, I was transported to a new, frightening world.  I couldn't seem to get past intense nausea.  I thought it would pass, but nope.  I ended up in the ER December 7.  Ultra sound, CT scan, colonoscopy, colon resection.  What?  Cancer?  Me?  Crazy, right?  So here I am.  Stage 2 diagnosis, 3 rounds of FolFox down, 9 to go.  25% complete.  Fatigue like crazy, neuropthy, feeling icky.  But hey, I am not going to let this beat me. 

    I look forward to meeting you all, learning from you, supporting you in health. 

    Live For The Day

    So true. As I tell people, I still cannot believe this has happened and is continuing to happen.  Out of nowhere.  Resection and now port put in today.  Each step sort of splashes a bit of "yeah this is real" before it is back to "Huh?"  The times were the minutes before going into the main surgery.  And today sitting in the bed waiting to be bought into surgery for a port there was the few minutes of feeling bad/sad whatever.  And considering this is a somewhat minor nothing compared to rescetion and losing about 1/3 of my colon, took me aback a bit. Should have been nothing in my mind, but those couple of minutes hit me like "Ah &*(()) I probably really do have cancer and this is a fight."

     

    Anyway, welcome to the boards, great people here and they have been amazing and have helped my a ton already.

  • NewHere
    NewHere Member Posts: 1,350 **
    abrub said:

    Sloan Kettering and Acupuncture

    Sloan has an Integrative Medicine group that includes Acupuncture.  It might be worth checking in with Integrative Med to find out what you can do about side effects; neuropathy, etc.  They can recommend supplements that are safe with chemo, as they are cancer specialists.

    Going To Set That Up

    I am in next week to start chemo and will start to arrange those things.  Grabbed the pamphlets and information the first day befoe I even met the surgeon while waiting.

    I like they offer that.

  • Trubrit
    Trubrit Member Posts: 5,536 **
    NewHere said:

    Live For The Day

    So true. As I tell people, I still cannot believe this has happened and is continuing to happen.  Out of nowhere.  Resection and now port put in today.  Each step sort of splashes a bit of "yeah this is real" before it is back to "Huh?"  The times were the minutes before going into the main surgery.  And today sitting in the bed waiting to be bought into surgery for a port there was the few minutes of feeling bad/sad whatever.  And considering this is a somewhat minor nothing compared to rescetion and losing about 1/3 of my colon, took me aback a bit. Should have been nothing in my mind, but those couple of minutes hit me like "Ah &*(()) I probably really do have cancer and this is a fight."

     

    Anyway, welcome to the boards, great people here and they have been amazing and have helped my a ton already.

    Glad to hear you now have your port

    It sounds as though it all went well. Be sure and take it easy for a few days. 

    Sue - Trubrit

  • NewHere
    NewHere Member Posts: 1,350 **
    Trubrit said:

    Glad to hear you now have your port

    It sounds as though it all went well. Be sure and take it easy for a few days. 

    Sue - Trubrit

    Going to Chill

    They did not put me fill out, but did not feel too much really.  Best part, I could still crack jokes, except when they asked me to be still or quiet.  Cool  I am pretty sure I came out with some of my best material ever, or it could have been the drugs.  I prefer to think it was just good (did hear some laughs)

    Yeah, got home and guess the local was still there, so thought I could do some things.  Seemed to have worn off and it is kind of sore/hurts.  Sitting in front of computer to work, with the angle, was not happeniing.  Crashed on couch with laptop and it is not so bad.  For a bried instant I thought I would run out to do some errand, just some normal during the week before chemo. Taking it easy is a lot more my speed at this point :)

  • deb0510
    deb0510 Member Posts: 1
    Easyflip said:

    I was

    where you are now almost exactly 2 years ago. Your doc sounds very good. I had 10 and 1/2 infusions of oxy. They cut it out for my 12th because of neuropathy and blood counts. Funny how they say you only need 9 but they still do 12 all the time, oh well. The idea of chemo freaked me out of course but the reality of it wasn't too bad for me. Emend worked great for nausea and I didn't lose my hair. I had cold sensitivity and weird taste sensations but nothing I couldn't handle. I didn't like sleeping with the stupid pump, it made noise and I got wrapped up in the tube. Chemo can cause insomnia and I was given Ativan for it. I remember being very tired.

    You're early in the process and I can imagine it all feels very surreal. I too was busy with the nuts and bolts of treatment but I do remember one specific night, in the dead of night, when it 'hit' me that I actually had cancer. I started to feel panic but then something odd happened. A very warm reassuring 'something' washed over me and calmed me. I'm not super religious or extraordinarily brave and the 'something'  could have been my own mind but I'm very grateful for it because I haven't been afraid since. It's actually been a pretty peaceful and happy last two years for me despite my further cancer trials. I hope the same or something similar for you. That night I found out I'm not afraid of dying and that's taken the wind out of feelings of fear and anxiety. If it is divine I'm completely grateful and if it's some primal protective brain thing I did I'm grateful for that too. It would suck to be afraid all the time.

    Keep being funny, it helps. I'm a funny guy too : ) And you'll get a lot of attention, enjoy it! Good luck!

    me too!

    I had the exact same thing happen to me- the realization of having IIIC, happened during the night- and a warmth that I can't really describe came over me- a feeling of complete peacefullness & i also thot of it as "I'm going to be OK"- whatever that is!  I'm not a religious person- but am spiritual... since that time- I've been 'obsessed' isn't a good word- but I am enthralled with birds!! That feeling I got that night was like "wings" surrounding me... and well- birds/ angels have wings!! Innocent  I'm happy to see someoone else had the same experience!!!  I was diagnosed in September 2013- finished chemo on April 30th of last year (i had the full 12 infusions- well, 11 1/2 -as i had a reaction during the last 1/2- WEIRD!!).  So far- first CT scan came back clear as did first colonoscopy since....

    My cell counts fluctuated through out- I looked at it as a week off of chemo! Handle each day with a positive thought process & you'll do great.  One thing that did happen (besides the neuropathy) was not being able to drink cold.... or touch cold.  Use a straw- that helps some & warm pretty much EVERYTHING up a bit... don't recommend warm gator-aide... yep tried it... PUKE!! That would usually happen the first 4-5 days after treatment.... 

    Laughing