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5 FU hates me...that's all there is to it!

phrannie51's picture
phrannie51
Posts: 3411
Joined: Mar 2012

Even with a 20% cut in the dose...no sooner did I loose the pump and the mouth sores pop up...the only difference this time is I don't bleed when I talk. Back to using my tube (after a whole 6 days reprieve after healing from the last 5 FU). It's hard to keep my weight up with 3 weeks on the tube, and only one week to add some pounds...before they hit me again with another dose.

That's another thing....I've been getting chemo since April 24th, every 3 to 4 weeks...does this seem like over kill? Do I sound like I'm trying to finagle a way out of the last treatment Aug. 28th? I am!! :) I'm tired of feeling this crappy.

p

Laralyn's picture
Laralyn
Posts: 405
Joined: Apr 2012

I'm so sorry the treatment is abusing you. It sounds awful. I don't know anything about the treatment for your type of diagnosis, so I just wanted to let you know that I'm thinking of you. I know you'll get through this!

katenorwood
Posts: 1732
Joined: May 2012

Phrannie,
Good lord girl it seems like they're putting you through the preverable ringer ! I'm so sorry you have to endure this. It won't be long and you'll be coming out the other side. You have been one tough cookie ! My thoughts and prayers are with you lady ! Katie

hwt's picture
hwt
Posts: 1655
Joined: Jun 2012

Oh so sorry to hear. Wish there was a solution to offer but I battled those sores on my lips until tx finished. They will be the side effect I always remember. Can you put enough Ensure or the like in your tube to keep the weight up?

boardwalkgirl
Posts: 251
Joined: Jun 2012

So sorry Phrannie51, I had a friend that had horrible side effects from 5FU too. I think mouth sores are just the worse too. Will be praying they go away soon. I don't blame you, I would be trying to figure a way out too.

Skiffin16's picture
Skiffin16
Posts: 8021
Joined: Sep 2009

You can hang...one more just to kick cancer azz....you can do it.

JG

Grandmax4's picture
Grandmax4
Posts: 544
Joined: Dec 2011

you can do this, you CAN do this!!!

CivilMatt's picture
CivilMatt
Posts: 2642
Joined: May 2012

Hi Phrannie,

While I am 100% on your side, if the doctor says you need all the chemo scheduled, then I will tearfully have to agree with them. I know it is hard, but do your best to tough it out. If you need more time, tell them. I am sure if they had any doubts about you completing this round, they’d stop it and let you rest. Find something high calorie (something) to put in your tube.

We are with you all the way.

Best,

Matt

Sam999
Posts: 305
Joined: Mar 2012

Hi phrannie, so sorry to hear about this. You will get thru this. Just keep thinking you are almost done, just few more days and all this will be behind us. Keep up with the vhc, you got to keep the weight up, specially since you are so skinny.

Sam

phrannie51's picture
phrannie51
Posts: 3411
Joined: Mar 2012

what is it about the mouth sores that makes me such a weinie? I think I've been thru the rads and other chemo's...put one foot in front of the other, and just kept chugging along...but throw mouth sores at me, and all I want to do is hang in a chair all day, waiting for the next nap to get me out of here.

I'll get thru it this time...and of course the next time, and then I'll never have to do it again...thanks everybody for being here....I'd go nuts without this site.

p

tuffenuff's picture
tuffenuff
Posts: 273
Joined: May 2012

I feel the same way with this sore throat this week and it only hurts when I swallow! We can only be so tough for so long before it gets to us.

Skiffin16's picture
Skiffin16
Posts: 8021
Joined: Sep 2009

Sometimes that's the best thing for you....

When I was in the GroundHog's Days, naps were the best thing ever.

They helped get through the daily routine, and of course healing the body.

Not sure if you are still using the Mygard, or something else. I didn't really have any reactios to the 5FU or other chemo drugs. My rinse was a mixture of baking soda and hydrogen peroxide.

Likw Linda, I just hate hearing the pump every 30 seconds or so... But I just got the mindset that every squirt was killing a cancer cell and keeping them from trying to grow.

Best,
John

osmotar's picture
osmotar
Posts: 936
Joined: Jul 2011

P,

I hated the 5fu punp , not the drugs, but the annoyance of just wearing for 4 days, my last sesssion with it , I could hear it pump, yet when I wnet to have it disconnected,it showed I had just a few cm pumped it..the onco nurse made a call and she hooked me up to a bag or a push for the final treatment, they we all surprised it hadn't worked. I got chemo treatments every 21 days all day long..hang in there you ahve been doing freat so far.

Linda

Kent Cass's picture
Kent Cass
Posts: 1738
Joined: Nov 2009

Finish line is real close- try to just focus on that. Sores are definitely no fun, but once it's over they should clear out fast. Naps are a good thing- this tx thing is only a temporary thing. You're doing great.

kcass

Tim6003's picture
Tim6003
Posts: 1489
Joined: Nov 2011

You are the tough one on the block in my opinion...we want you well so you just hang in there :)

Best,

Tim

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

Hmm, I don't know if I will say it correctly in English... There's one saying taht really helps me thru troubles in my life or thru my dad's desease now... It goes something like this:
THE NIGHT IS DARKEST BEFORE THE DAWN!

This would indicate that before the dawn is actually the darkest time of night. So let's carry this words with us through this journey, because it always gets worse before it gets better.

But you're a strong fighter and you will win this! Your goal is just around the corner! Hang in there!!

D Lewis's picture
D Lewis
Posts: 1504
Joined: Jan 2010

That's why they call it "FU".

:)
Deb

Skiffin16's picture
Skiffin16
Posts: 8021
Joined: Sep 2009

Definitely named correctly....just sayin.

ditto1
Posts: 628
Joined: Mar 2012

I am requesting we all meet this Saturday at an undisclosed location so we can Camoflauge the H & N bus. We will then proceed to load up P51 and put her in hiding until the 5FU mouth soars are completely healed. We will then load her up take her to the ONC doctor and request she be allowed to skip the last treatment and replace it with her favorite ice cream. I have no reason to believe they will not go along with our demands. If they choose not to we will fill all there trash cans with kleenex, and empty there water machine cups. Wow sorry P51 just dozed off for a minute but what a dream. Darn it was a dream, I guess I should have known that since all the doctors want to do the full treatments they originally outline and rarely seem to allow changes. I know it sucks, they always ask me my pain level, I tell them pain around a 3, but as far as the YUCK level for this treatment I tell them a 10. So hang in there and you will make it, we say it because its true but as tough as you have been its just that much more of an assurance. Well Im going to finish my NAP, hope the next dream lands me in an episode of Drive Ins, Diners, and Dives, with me driving the Camaro and eating anything that does not start with the letters BOOST

Isign4Him
Posts: 34
Joined: Jul 2012

Hang in there .......One more to go .... You can do it... I'm praying for strength for you.... And when we both come out on the other side we will have Tbone steaks and double cheeseburgers via web cam.... So now you have something to look forward to!

In Christ, Kevin

phrannie51's picture
phrannie51
Posts: 3411
Joined: Mar 2012

Perfect dream....and to end it with food!! Oh boy! My kind of dream. I'm really hungry tonight...hoping I dream myself to a little Mexican restaurant tonight :).

p

Mikemetz's picture
Mikemetz
Posts: 305
Joined: Nov 2011

Diners, Drive-Ins and Dives is one of my favorite shows, and has been part of my "Cancer Revenge List" since completing treatments in 2009. I've manged to find and eat at about 15 DD&D places in the last 2+ years, and look forward to more in the future. Just my way of saying "Hang in there" until things turn around and you can get back to a mostly-normal eating selection. I actually ended up liking Boost and we keep a supply on hand for quick snacks on the run during the day. Of course, it DOES taste better when you don't HAVE to eat it!

mike

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

It seems strange to me how the same treatmens affect each person differently. I had zero problems with my pump and 5FU gowever the cisplatin kicked my butt (along with the rads). Would be interesting to find the gene that makes the differences.

Thats my only deep thought for the day.

Phrannie, you are close so hang in there.

Denny

hwt's picture
hwt
Posts: 1655
Joined: Jun 2012

I'm not big on spicy Mexican food but for starters try a plain cheese quesadillas when you are able. I could eat those early on and still do. Might be enough to satisfy that mexican craving

phrannie51's picture
phrannie51
Posts: 3411
Joined: Mar 2012

quesadillas sound WONDERFUL....I went to a picnic 3 weeks ago, and tried a little square of marble cheddar cheese...the kind with mild cheddar and jack together....I could taste it...so you bet I'll try these as soon as I can put anything into my mouth.

p

Skiffin16's picture
Skiffin16
Posts: 8021
Joined: Sep 2009

Baked cheddar cheese and Jalepeno' poppers right out of the oven.....mmmm, now thhose will get your attention.

Best.
John

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Bane of my existance too, for a while. I tried to not talk for a while, and developed a way of speaking that was less painful, but (to me) I sounded like the deaf people on tv who talk. Nurses in the hospital heard my "accent", and were trying to figure out which foreign country I was from - one was surprised, and complimented me on my ability to write so well in English. Sigh

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