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DID NOT THINK THE GOOD TIMES WOULD END SO SOON

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

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

ditto1
Posts: 630
Joined: Mar 2012

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's picture
Pumakitty
Posts: 653
Joined: Mar 2010

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
Posts: 1802
Joined: May 2012

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's picture
hwt
Posts: 1821
Joined: Jun 2012

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's picture
blackswampboy
Posts: 341
Joined: Jul 2012

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. ;-)

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

"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."

phrannie51's picture
phrannie51
Posts: 3598
Joined: Mar 2012

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's picture
CivilMatt
Posts: 2803
Joined: May 2012

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
Posts: 289
Joined: Apr 2011

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's picture
D Lewis
Posts: 1518
Joined: Jan 2010

'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

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

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's picture
osmotar
Posts: 950
Joined: Jul 2011

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
Posts: 197
Joined: Sep 2012

Hope things level out soon for you. Keep fighting.
Jim

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

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's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

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's picture
Jimbo55
Posts: 572
Joined: Jun 2010

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's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

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

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

kcass

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

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
Posts: 289
Joined: Apr 2011

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

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