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Chemo.... what to expect??

mark440's picture
mark440
Posts: 63
Joined: Jan 2010

I just had open surgery,had a tumor removed from my rectum and 60 lymph nodes... Im starting chemo march 1st for 6 months...5/fu .. leucovorin... oxioplatinum..what should i expect.. hair loss?...sickness?? loss of appetite?? mouth sores?

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Mark, were the spots on your lungs cancer? I'm assuming so since you're getting Avastin.

I don't know anything about Avastin from personal experience, but I would crash after disconnect from the 5FU pump. The Leuko is a form of folate (folinic acid) that helps the 5FU remain active longer. :- )

I had 12 tx's which included oxi. My hair thinned. I did NOT lose my appetite. Never threw up. WAS constipated.

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Heres how it went with me each time.

____They take a sample of blood...making sure your counts are good to go ahead with chemo...
If counts are good they then hook you up to your port and flush it.. shouldn't hurt, maybe just a little sting...
They will then get your "cocktail" ready and nausea meds.
___In my case there were about 3 hours of drip...including nausea meds, oxaliplatin,leucovrin. Pronounced lu-co-vor-in.......
I found it easiest to sleep through it all or doze...made the time go by fast...
____When that is all done they flush again and set you up with your fanny pack.....
The fanny pack makes you look like a tourist...start practicing another language :-)
You usually run 46 hours with the pack. It will beep about 1 hour before it is suppose to come off on the Wednesday...When its empty (and you can tell) just punch pause and then stop and it will shut the pump down...nothing at all to be scared of with the pump believe me its bulletproff.....
It has tubing that is probably 5' long..when I went to bed I would lay the fanny pack on the middle of my bed and let all the tubing out. I would normally wake up the next morning with it wrapped around me once or twice but still never had any trouble with it. They will tape it well enough that you won't have to worry about it getting hung on something and pulling loose..won't happen...
Then comes Wednesday and out comes the needle...Its like having a birthday, it feels so good to get rid of it albeit it wasn't really that bad to begin with.
I normally felt great by the next Saturday and had all the next week to enjoy my freedom, then Monday it starts over again....But its getting closer to the end every visit...Thats the goal, getting done...
I had nausea problems ...even the Emend didn't do it for me.I just had to ride it out...You may not have any side effects at all. Hopefully not but if you do we have answers for it ...
I had constipation the first 4 days then it slowly corrected itself...
Food was a definite no for me until about Thursday and the spicier the better...You will figure out what works best for you, everyone is different...
The one thing I didn't do is stay very hydrated and I paid for it by staying nauseated longer. The hydration helps get it out of your system faster...
If it zaps you for 3-5 days so what..just lay around and get better. Thats part of it.
I honestly think that the scariest part is the unknowing. Once you get your first one behind you the rest will get easier, you'll know what to expect.
Chemo has a tendancy to kill off white blood cells and you are checked before each treatment to see if your WBC(white blood count) is high enough to continue with that weeks treatment, if its not its normal, they will give you a shot of Neulasta or Neupagen. Usually the neupagen is given 2-3 days in a row. This will get your counts back up. If it drops to many times where you are missing to many days then they may set you up as they did me to get a shot of Neulasta just after having your fanny pack removed.
Neither shot hurts at all...If it starts to sting a little tell them to slow down..It only stings if they inject it to fast...One of my best nurses held it in her hands until it warmed up then injected me and I never felt a thing....

I don't know who posted this but it is excellent info.

kersha
Posts: 63
Joined: Jul 2009

Diane Avastin is not only used for lung cancer it is also used for colon cancer. That is what my husband has been on together with the folfox and folfiri.

Nana b's picture
Nana b
Posts: 2756
Joined: May 2009

Same treatment plan that I was on........ My side affects were.........half my hair fell out but my ONC said it was rare with the cocktail I was on. Exteme cold sinsitivity, restless leg syndrome, sore throat, nueropathy in the feet, blurred vision, lack of concentration, extreme fatigue, nausea, constipation. I lived in a fog for eight months, but managed to work and commute two hours a day, worked 10 hrs to make up for my chemo treatment days.

My best to you!

geotina's picture
geotina
Posts: 2047
Joined: Oct 2009

Everyone reacts different to chemo. The more information you have the better so when side effects do occur, you are prepared and know what is normal and what is not. Knowledge takes the anxiety level way down. Look at George's bio, just click on his name and it will come up and tell you our story. Don't forget to check in with us and let us know how recovery and chemo is going and also post any questions you may have. Take care - Tina

kersha
Posts: 63
Joined: Jul 2009

Mark sorry to hear what you have to go through. About the chemo, everyone one reacts differently to chemo. My husband did not loose his hair but it thinned out. He tolerated the chemo well until the 5th treatment and the 6th really kicked him. He only had to have it 3 months at a time because of surgery but every time it would be the 5th and 6th rounds that got to him. Fatigue, some loss of appetite, slight nausea, weight loss. He was able to work until the pump came off. What he always said though that the more he stayed in bed the worse he felt so he would always force himself to get out of bed and move around. I hope this helped. Good luck and keep your spirits up.

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

Are you getting oxaliplatin or irinotecan. The biggest side effects will be determined by which of these you take. Mostly you should feel ok for the first few treatments, the accumulation is what gets you. After awhile things begin to change. For me, the nausea wasn't much of a problem. The fatigue wasn't bad. The worst part for me was the pump. Every couple of minutes it pumps a little bit of chemo into you. Toward the end of the cycle my body built up it's own internal clock. I kind of puked(dry heaved) a little about one second before the pump actuated. That's a bunch of times. The atropine froze my colon for 4-5 days. The 5 FU gave me diarrhea but I couldn't go. So sometime on the 4th or 5th day I would go non stop. Eventually things would ease up 7 days after chemo. I generally had 5-7 good days before chemo. I haven't really experienced this on xeloda but when on 5-fu I would feel like my heart was pumping mud and sludge, I could feel my heart beat and it seemed as though it was struggling, I always had a nasty taste in my mouth and always experienced an odor which probably wasn't there. Things didn't taste or smell the way I remembered.
I was able to accept and deal with side effects, you should be fine.

PhillieG's picture
PhillieG
Posts: 4664
Joined: May 2005

Sorry to hear of your surgery and all.
The answers are pretty much yes, yes, yes, and yes.
1.You may get some hair loss or thinning.
2.Nausea is very common.
3.Loss of appetite is too. (marijuana works well to lessen the symptoms for both of those)
4. That happens sometimes.

I have been on all of those meds, the Avastin worked very well for me in the beginning, it shrunk the tumors so I could move ahead with surgery.
-p

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

and Lizzy....Quote "I don't know who posted this ".end quote........I do...:).....I lived it....

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Mark, Good to hear from you. If you are starting chemo, then you must be recovering well from surgery. That's a great thing. I'm on FOLFOX and avastin. My hair thinned, but I didn't lose it. I barfed and barfed my first 2 treatments. My Dr. put me on emend - it works great - mild nausea but no more barf. Eating is hard sometimes. My appetite is low for a week, but it comes back. My jaw is sometimes sore and I have to take a few slow "warm up" chews when I eat. I used to get mouth sores, but haven't had that problem as much lately. My energy level fluctuates. I drink fresh juice and keefir smoothies. I think that really has helped with my energy. I've experienced many of the other side effects that folks have noted here.

Here's the weird thing. I never know which side effect will stay away, and which one will come roaring on. 2 treatments ago I had the hiccups - for a week. They weren't steady - they would come on fast and furious and then go away for a while. I usually have some hiccups, but that time they were really bad. I didn't hiccup at all after this last treatment. Early on I had mouth sores, but they haven't been bad for several treatments. Lots of other examples. I've just learned to go with the flow.

I've only been a member here for a little while. I've been reading these posts for months. The one thing that the more experienced folks always said is Drink Lots of Water. It sounds easy enough, but it's been hard for me. For a week after treatment I want to spit out any liquid. I really have to force it.

Your "About Me" page says you are going to have chemo and radiation prior to surgery. Did that change or did I miss something?

Take care Mark.
Roger

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Buzz, I should have known it was yours... I copied, pasted, and saved it without getting your name. I thought it was perfect info. Thanks for all of it.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

and another thing I also have a dog that looks just like yours, cept' its black...its favorite thing to do is lick my ear while Im trying to sleep,I dunno how long shes gonna be around. Most likely longer than me...LOL....

and the nausea...Emend gave me 3 days of ease but on the 4th it was back thened eased back up on the 5th 6th and finally the 7th I was back to being able to do my beloved coffee, etc...Took me a week of sickness to have the following week of bliss, but as they say, this too shall end......
Good Luck with the chemo.....Buzz

sharpy102's picture
sharpy102
Posts: 334
Joined: Apr 2009

@Buzzie: don't say that! You'll live waaaaay longer than your dog!!!!

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Buzz, those are poodle kisses! This is my first poodle. She is so much fun (and trouble too sometimes). She has really helped me so much with all of her love and just plain silly ways.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I was making the comment that if she kept on licking my ear while I was trying to sleep I may get rid of her. But my wife would probably get rid of me first...It was a joke sweetie.....and yes lizzy the poodle kisses are nice but not after 12 hours on night shift and getting them 2 hours after you get to sleep......She needs to learn to tell time...:)

Steve Z's picture
Steve Z
Posts: 51
Joined: Sep 2009

if you have to experience this it's a good place to get an understanding of what's going on from people that have also experienced it. The only thing I have to add that others didn't mention is that I experience jaw pain the first bight of every meal. It lasts less than 30 seconds and then I'm good for the rest of the meal. It's the oddest thing and as I understand it's rare.

One question for you? How do you think Polanco will do at 3rd?

coloCan
Posts: 1842
Joined: Oct 2009

while doing Oxy, at rear of mouth,both sides of jaw. Would stop chewing, wait a second or two and then continue eating...Be careful of all things cold; depending on where you live, even room temp can be too cold in winter......Steve

Fight for my love
Posts: 1304
Joined: Jun 2009

My husband is on the same chemo now.what he is having now:nosebleeding,fatigue,queasy stomach(sometimes a little nausea,but never threw up),hair thin,dry skin(his hands turned to brown and very wrinkled like 70 or 80).Since the neuropathy from the oxi was quite serious,the oncologist took it off at round 5.With the oxi,what he had was:heartburn(he never had heartburn in his life before chemo),cold sensitivity,jaw spasam,poor appetite,fatigue,sleepless night.Anyway,without oxi,it is more toleratable and my husband can recuperate back after a couple of days when chemo is done.

RickMurtagh's picture
RickMurtagh
Posts: 530
Joined: Feb 2010

Like the rest sorry to hear about the prognosis. Folfox can be manageable for some, not so much for others. Be active in telling your oncologist your symptoms as they change.
I was nauseous and it was getting worse as the treatments progressed. Eventually, after trying a few things, my oncologist put me on Amend. Nausea went away, totally. Sadly, that was not the worst of my symptoms, which was kind of disappointing.
Just keep your oncologist up to date on your symptoms. They have treatments for most of the symptoms from your chemo, some work better than others.
KEEP YOUR ONCOLOGIST INFORMED...
I you wiki folfox (that is the protocol you will be on) there is some great info out there easily available and it is simple to understand.
http://en.wikipedia.org/wiki/FOLFOX

clier
Posts: 29
Joined: Feb 2009

Mark,

I had 12 treatments of FolFox, plus 2 of Sir Spheres; one while in chemo & one 2 months after. Now I'm 3 treatments into another 12 weeks of FolFuri. I didn't lose any hair. FolFox wasn't too bad - a little neuropathy in my feet, some constipation. I have abdominal pain, but it's from swelling in my liver sack (have mets to my liver). With FolFuri, I've had some loss of appetite, some nausea, a little vomiting & some constipation.

All in all, you have to commit to deal with each side effect as it comes, going to the nurses & docs for ideas, help & meds. It's not pleasant, but it has to be done, right? And yes, everyone's reaction is different!!

Nana b's picture
Nana b
Posts: 2756
Joined: May 2009

Lots of good advice here, just remember that chemo is in your secretions....I made sure that my grand babys did not drink after me, or pick up something I was eating.

Condoms?? I read that some used them, me personally, it was the last thing on my mind so I didn't even entertain the idea! lol

Hang in there, one step at at time, it will get tough but you can do it!

I didn't read all the posts here so hope this isn't a duplicate.....

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