DID NOT THINK THE GOOD TIMES WOULD END SO SOON

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luv4lacrosse
luv4lacrosse Member Posts: 1,410 Member
Hi and hope you are all doing well.

I was riding the high horse last week with my Carboplatin, Erbitux and 5FU manpurse along for the ride. Not one side effect as of Friday Night as I was watching my STL Cardinals rout the Nationals 12-2. Did the whole party box, yelled and screamed and high fived and had a great time. fast forward to 2 am Saturday, can you say "Montezumas Revenge"?? was on the toilet all night and woke up with mouth sores, thrush and a horrible looking lip job.

I finished my 2nd round of Erbitux earlier today and they gave me 12.5 Mics of Fentanyl, some OXY pills and the mouth swish for the Thrush.

Good news is I have been told I should feel better as the week rolls on, and I hope so as I am going down to Kansas State to see my son and watch the Wildcats beat up on the Jayhawks.

Can anyone lend me some advice for coping and treating this, or just tell me "hey little fella, it will be all right."

Thanks in advance

Please support A PARTNERSHIP FOR A JAYHAWK FREE AMERICA

Mike

Comments

  • ditto1
    ditto1 Member Posts: 660
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    Wow JayHawk free society
    stay in stealth mode going thru Lawrence and hope you get your wish that K States Wildcats whip butt, very likely the outcome. As for the chemos and their side effects, all I can say as I finish up my 3rd visit with thrush it sucks. Just keep taking the meds as prescribed and you should be fine. Wish I could tell you it will go away quickly but seems my thrush lasts about 10 days. Not much help here but know you will make it thru this and enjoy your game.
  • Pumakitty
    Pumakitty Member Posts: 652
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    It will get better
    Mike,

    Sorry I have no advice but some words of encouragement. It will get better and you will beat this again. Much love and hugs coming your way.

    Kathy
  • katenorwood
    katenorwood Member Posts: 1,912
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    Go Wild Cats !
    Mike,
    I love your positive posts ! I am so sorry you're having to endure these crappy side effects. Thrush is a pain in the as... ! You will make it, please stay looking forward and continue to stay involved with life. You are awsome, and gives me inspiration to continue to battle right along side of you ! Good luck to your sons team for a big win ! Katie
  • hwt
    hwt Member Posts: 2,328 Member
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    Mike
    Good for you going off to Manhattan to cheer on the Wildcats! While I did not have Erbitux I did have thrush on more than one occasion during my tx and the oh so nasty mouth sores. They gave me the swish along with an antibiotic. The antibiotic kept me in bathroom so I only took it a day and quit. My next bout with thrush, they gave me the same antibiotic and not knowing it I bought it again and had same result so quit again. Bottom line, the swish did the trick with the thrush. Saw marked improvement within 48 hours. Slight burning lingered for awhile but tolerable. Wish I could say the same for the mouth sores but I never found anything to make them go away. Doctor told me to rinse w/baking soda and salt. You probably heard me screaming in Eureka that day because it burned so bad. Basically, I just kept lots of Aquaphor on my lips and drank everything thru a straw. I think P51 said drinking from a styrofoam cup was easiest for her. Hope someone comes forward with a fix on that one for you because the lip sores can be miserable. The only positive I can say on the lips is that they healed pretty quick after tx finished. Just know "it's all gonna be ok, little fella" and the Wildcats are gonna kick a**.

    Candi
  • blackswampboy
    blackswampboy Member Posts: 341
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    sunburn
    hope it's a night game, 'cause sunshine and chemo don't mix. take care against the burn.

    the cardinals have been known to induce nausea too, but fortunately the Cincinnati Reds are an easy cure. ;-)
  • phrannie51
    phrannie51 Member Posts: 4,716
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    Oh brother....I feel your pain....
    I'm going to feel free to blame the 5FU, since I've not taken the other, but can attest to the fact that 5 FU gives people the runs and it just about did me in with the mouth sores...I couldn't ingest anything via my mouth, not water, not milk...nada, for 3 weeks out of every 4 weeks between fanny pack times.

    I found treating thrush from the inside out worked better for me...so used Diflucan. As for the mouth sores, the only things I could take into my mouth were L-Glutamine mixed with water, and I could swallow that....and the tried and true Soda/salt mixture...I rinsed with that 4 to 20 times a day. My lips turned to hamburger...they were the worst.

    It does get better, but the experience is so close in my recent past, that you have all my empathy...

    p
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    pass the Erbitux
    Hi Mike,

    I did have Erbitux as my chemo juice (1-loading dose and 7 weekly doses every Friday after radiation). The main side effect most of us share is a pimple like rash covering entire torso. My face also had pimples. The pimples are loaded, so it’s like being a teenager. They come and go all on their own. Everybody asked if it itched, but mine never did. My rash developed soon after my loading dose. Today, at 6 months post I have a slight freckling, but most of it is gone (along with my dandruff).

    You are up to bat now little fella and I hope you knock this c _ _ _ out of the park. I never thought of you as a little fella, but you said to say………..

    Best always,

    Matt
  • KareGiver
    KareGiver Member Posts: 301 Member
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    CivilMatt said:

    pass the Erbitux
    Hi Mike,

    I did have Erbitux as my chemo juice (1-loading dose and 7 weekly doses every Friday after radiation). The main side effect most of us share is a pimple like rash covering entire torso. My face also had pimples. The pimples are loaded, so it’s like being a teenager. They come and go all on their own. Everybody asked if it itched, but mine never did. My rash developed soon after my loading dose. Today, at 6 months post I have a slight freckling, but most of it is gone (along with my dandruff).

    You are up to bat now little fella and I hope you knock this c _ _ _ out of the park. I never thought of you as a little fella, but you said to say………..

    Best always,

    Matt

    Hey Mike,
    Although my husband was on a different protocol, he felt good for a couple days after treatment and then it was downhill - flu like, really. Hope it works through quickly and you're feeling better soon!
  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    'Hey little fella...'
    'It will be all right...' Sorry I don't have more to offer. Not a sports fan and my butt was whupped by Cisplatin. No experience with the other nasties.

    Deb
  • blackswampboy
    blackswampboy Member Posts: 341
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    sunburn
    hope it's a night game, 'cause sunshine and chemo don't mix. take care against the burn.

    the cardinals have been known to induce nausea too, but fortunately the Cincinnati Reds are an easy cure. ;-)

    afternoon game
    "Avoid exposure to sunlight or artificial UV rays (sunlamps or tanning beds) while you are receiving Erbitux and for at least 2 months after your treatment ends. Erbitux can make your skin more sensitive to sunlight and sunburn may result. Use a sunscreen (minimum SPF 15) and wear protective clothing if you must be out in the sun."
  • ToBeGolden
    ToBeGolden Member Posts: 695
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    Oh Brother!
    When the docs list the side effects, we all think those nasty effects are for the other guy. I've been very lucky in that in my case the side effects were for the most part for the other guy. But I guess my turn may come sooner or later. Remember what helped so you can tell me when I finally need advice. Rick.
  • osmotar
    osmotar Member Posts: 1,006
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    Better
    Hi Mike,

    It does get better; after my first date with that 5fu guy, I got a neulasta injection , went down hill 2 days after that , ended up in the hospital for 3 days neutopenic (sp) super low white blood cell count..after that all turned back around. As for mouth sores I used a product called caphosol, had to ask my docs to write the script, I used it 4xs a day along with the salt/baking soda swish n spit...have to say not a mouth sore thru anything.

    soooook lil fella it gets better, kick some fanny ...and enjoy your trip to K-State.

    Linda
  • Hard12Find
    Hard12Find Member Posts: 218 Member
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    Mike
    Hope things level out soon for you. Keep fighting.
    Jim
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    Mike
    Hope things level out soon for you. Keep fighting.
    Jim

    MIke...
    It does get better, but you've been there and done that and know just how to kick butt!

    I would say li'l fella ..but based on the amount of weight it appears you press in that picture...I'm gonna say "big fella" ... :)

    Whispered a prayer before I hit post comment that you whip up on this and get a NED out of it....wonderful things do happen and are possible!!!

    Tim
  • VivianLee5689
    VivianLee5689 Member Posts: 546
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    Tim6003 said:

    MIke...
    It does get better, but you've been there and done that and know just how to kick butt!

    I would say li'l fella ..but based on the amount of weight it appears you press in that picture...I'm gonna say "big fella" ... :)

    Whispered a prayer before I hit post comment that you whip up on this and get a NED out of it....wonderful things do happen and are possible!!!

    Tim

    Not a lot to add, but positive thoughts
    Since David has not had his chemo yet I can't add anything to that discussion. I pray for a quick recovery for you and that you will be able to enjoy your time with your son.
    Vivian
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
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    Hey 'Little' Mike
    You know I'm with you all the way with this second battle. I can't see the Jayhawks adding any misery what-so-ever to your current condition. Gotta admire a guy like Bill Snyder. Now, as a life-long Cubs fan, I can't offer anything positive for your Cards. I'm still pissed how they stole Lou Brock from us! Cheers.

    Jimbo
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
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    Jimbo55 said:

    Hey 'Little' Mike
    You know I'm with you all the way with this second battle. I can't see the Jayhawks adding any misery what-so-ever to your current condition. Gotta admire a guy like Bill Snyder. Now, as a life-long Cubs fan, I can't offer anything positive for your Cards. I'm still pissed how they stole Lou Brock from us! Cheers.

    Jimbo

    And-
    Bruce Sutter, Lee Smith, and a couple World Series(?)...

    How ya doing, Mike? Was the Infield Fly Rule correct?

    kcass
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
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    Kent Cass said:

    And-
    Bruce Sutter, Lee Smith, and a couple World Series(?)...

    How ya doing, Mike? Was the Infield Fly Rule correct?

    kcass

    INFIELD FLY RULE
    Hi Kent, if you are referring to today's game / infield fly rule, I did not get to see or hear the game as I was traveling back from K State. Sounded like we deserved to lose if we have bases loaded, no outs and cannot turn even one run.

    I am doing OK, had a great weekend with my youngest son at the KSU / KU football game. The only bummer part of the weekend was last night at dinner when he asked me to tell him the truth regarding my cancer recurrance, and bless his heart as he took it like a man when we told him that this time around is not good, but I am fighting with everything I have. A few tears were shed, but he feels better just knowing.

    Take care

    Mike
  • KareGiver
    KareGiver Member Posts: 301 Member
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    INFIELD FLY RULE
    Hi Kent, if you are referring to today's game / infield fly rule, I did not get to see or hear the game as I was traveling back from K State. Sounded like we deserved to lose if we have bases loaded, no outs and cannot turn even one run.

    I am doing OK, had a great weekend with my youngest son at the KSU / KU football game. The only bummer part of the weekend was last night at dinner when he asked me to tell him the truth regarding my cancer recurrance, and bless his heart as he took it like a man when we told him that this time around is not good, but I am fighting with everything I have. A few tears were shed, but he feels better just knowing.

    Take care

    Mike

    Hey
    Glad you had a good weekend. The "kids" part of this whole thing is pretty tough. Yes, fight it with everything you have.

    Thoughts and prayers to your whole family...

    Lynda