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Starting oxaliplatin and 5FU

ninetoes's picture
ninetoes
Posts: 81
Joined: Jun 2009

I'm starting Chemo on 6/3 and was wondering if anyone has had oxaliplatin and 5FU. I was diagnosed with stage 2 colon cancer and had surgery on 4/30 to remove 1 foot of my colon along with a baseball size tumor. The tumor was malignant and was told I have to do 12 cycles of Chemo.

Thanks

bdee
Posts: 305
Joined: Feb 2009

My first treatment was with oxi and 5fu, then avastin was added on the second treatment. With just oxi and 5fu on my first treatment, aside from some cold issues, was fine. Even though after five weeks of taking oxi, 5fu and avastin I couldn't eat, couldn't keep anything down if I could eat, was tired ALL the time. Sleeping most of it. My doctor told me he had 70 people on the same chemo drugs and a 70 year old man and I (54) had the worst of the side affects. After five weeks of no chemo, my doctor started me back on just 1/2 a dose of 5fu and avastin. Aside from being tired the whole week after the second treatment, I certainly like it better.

I went for five months without eating any solid food and not being about to drink or touch anything cold, I would still go through it again because my CEA is 2.3, down from when I was taking it all (oxi, full 5fu and avastin).

Good luck to you and don't let what I said scare you. As everyone tells me...it will get better when you get off it. Only my doctor won't tell me how many of these treatments I'll be getting. Every time I ask he just says "we will see what the tests tells us." I've been having treatments since February 12 and he won't give us a prognosis or tell us how long I'll be on chemo. We're hoping to take a 2 week vacation in September and he hasn't given us permission for that yet.

Debbie

ninetoes's picture
ninetoes
Posts: 81
Joined: Jun 2009

Thanks for the reply. The doctor said everyone is different and I read all the side effects, is very scary. My CEA was 3.8 and hoping for a very low number after the Chemo. I'm still healing from the surgery and having bathroom problems. I'm sure the Chemo won't help that.

Good luck to you as well, and I hope you get off the Chemo soon.

Dave

bdee
Posts: 305
Joined: Feb 2009

My doctor was very adamant about not comparing myself to my "neighbor". He was emphatic that just because I knew of someone who had a common side affect does not mean I'll have the same side affect. I know, because I talk to people in my chemo suite that I did have all the side affects, but to a higher degree.

Good luck to you Dave, have a positive attitude going into chemo and I'll bet it will help. I was too scared going into mine, because I did read the internet about all the side affects. Wish I hadn't.

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

Welcome to the best board on the net! I am sorry we had to meet this way. I am on chemo now but only have 5FU, not oxaliplatin. Side effects vary by each person. Some have neuropthy in the hands and feet, vomiting, nausea, hair thinning or loss. BUT others have much milder reactions. The key is to let your medical staff know if you have ANY symptoms so they can combat them ASAP. There are anti-nausea drugs to help, and other things they can do.

Might I suggest that you NOT do research on the net. Most of the material you will find is at least 5 years old, and treatments for colon cancer have advanced tremendously in the past 5 years. And don't pay attention to "statistics" - we are not statistics, we are individuals. I was DX'd as Stage 3 and if I read the stats at that time, I would have assumed it was hopeless. I am now one chemo treatment away from NED (No Evidence of Disease) in only 8 months.

Come here often for support and questions. It's a great group.

Many Hugs, Vicki

ninetoes's picture
ninetoes
Posts: 81
Joined: Jun 2009

Thanks for the info. Yes, I was told by my doctor side effects could be mild and that it's usually the neuropathy and fatigue, but I won’t know until I start. I’m trying to stay positive, it’s hard some times. I got my porta catheter in Friday and it’s really bugging me. The tube runs into my neck and it’s very hard to move my head around or get up from a laying position without feeling like it’s ripping out.

I am staying away from the internet research, it’s making things worse. That’s why I came looking for a site like this to talk to people that are going through it.

Thanks for taking the time to respond, I wish you good luck and a clean bill of health.

Dave

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

Yes, literally everyone gets hit by the fatigue. Go with the flow, don't try to be heroic. When your body says "shut down and rest", then comply. Your attitude plays a big part. Keep smiling!

Vicki

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

Phil, Eric, Myself, and Johnnybegood will be joining you as we all have chemo on the same day. I'm on the same "cocktail" as you and tomorrow will start mey second treatment. I go in for two days of infusion and go home with the pump both days and then a disconnect on the third day with 11 days off.

You are right behind me in treatment so let's just think of it as getting this party started so we can all celebrate when we are done.

Welcome to the board and sorry you had to find us, but you will find a lot of amazing people here, with support and encouragement whenever you need it.

Good luck on Wednesday - we will be going through the same thing.

Kim

ninetoes's picture
ninetoes
Posts: 81
Joined: Jun 2009

Yep, 3 hours on Wednesday, home with the pump and disco on Friday and off 11 days. How was your first treatment? Is the pump easy to deal with? So far this has been a very good experience on this site, better then surfing and reading all about side effects. I’m hoping to be able to work, I work downtown Chicago and drive 45 min then a 10min walk. So far not liking the porta cath.

Thanks Kim, good luck to everyone.

JR's picture
JR
Posts: 140
Joined: May 2009

It took me about two weeks for the port to stop bothering me. I still don't like it much. The tube above my collar bone sticks out like a sore thumb. Looks bad. But I guess its one of those necessary evils. Good luck.

John

JR's picture
JR
Posts: 140
Joined: May 2009

The pump is another one of those necessary evils. It's not hard to deal with, It's just a pain in the *ss. It's a pretty tough little unit. I've dropped mine on a tile floor a couple of times and last week caught the tube on a sharp edge of an aluminum ladder. No harm done. It's always nice to have it taken off though.

John

ninetoes's picture
ninetoes
Posts: 81
Joined: Jun 2009

Thanks for the reply, good luck to you!

Dave

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

Dave: I go three days in a row. I know this is not usual, but my oncologist has split up the cocktail into 2 days infusion at hospital and then go home with pump both days and disconnect on 3rd day. First two days I did notice my throat with a little cold sensation and that lasted for about an hour each day on the third day about 1/2 hour and then for the last 11 days nothing. Drinking anything cold. One thing they did not tell me is the steroids you get could keep you up all night so don't worry if you don't sleep for 3 or 4 nights. Also, another thing they didn't tell me is that I would wake up soaking wet. If you wear pajamas make sure you have an extra pair (or even two in my case) for the night. I have felt fine for the last 11 days.

I would have been able to work by the way I felt, but I know they say the more treatments, the more it accumulates and your symptoms don't go away as fast, but everyone is different. I will keep you posted with my second treatment this week.

Good luck!

Kim

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

I guess I am not understanding what you have? My port is entirely under the skin and I can't feel it unless I actually touch the area. Are you saying yours is external? If it's bugging you, tell the docs! There are other ways to receive chemo.

Vicki

ninetoes's picture
ninetoes
Posts: 81
Joined: Jun 2009

It's under the skin, but the tube going to my neck sticks out and the site of the port is tender. When I turn my head or lift my head up it bothers me. I talk to the doc and she says it's normal. I don't know what normal is anymore.

Dave

Northvangirl
Posts: 3
Joined: Jun 2009

Hi, Dave

I live in Canada - so I don't know if that's why our Tubing is inserted differently.

But, when we're given an "Infusor" -- they give you a "picc" line in your upper ARM that
is covered by a 3" x3" (?) bandage. When the Infusor is attached to the "picc" line the hard plastic is covered with a gauze pad to stop it "sticking out" so obviously!! It is then covered with a stretch "netting" to keep everything together & looking neat.

It was suggested to me to cover the bandage with an elastic bandage -- but, I'm a gardener and I know that everytime someone walked by, they'd want to know how I'd hurt myself!!!
Some peope who are handy & knit or crochet make a small armband to cover the bandage.
I've just used a long, thin scarf & wound it around a few times, then knotted it. People see it - they wonder about it ------ but they rarely ask me why I am wearing such an obvious item on my arm!!!!!

Mind you -- if anyone ASKS -- I tell them EXACTLY what type of Cancer I'm fighting, the symptoms I have, etc. Then I tell everyone how fortunate I am that I haven't been physically sick, other than the sudden lack of energy. I've just learned that when my feet start dragging or when my legs feel like spaghetti, then I have to go restore my energy. I lie on my bed & sometimes snooze - sometimes watch tv while I play on my computer!!!

I hope your Dr. is able to check into whether you could have your line inserted into your arm. (try the Vancouver Cancer Clinic - it's an exceptional facility). In B.C., "picc" lines are RARELY inserted in the chest -- unless it is the ONLY option left. (In other words, the blood vessels can no longer take a needle or chemo, etc)

I have a box beside my pillow that I keep all my medications in, so that if I wake up needing something, I don't have to get out of bed to get it (saves energy --and-- you don't wake up too much!!)

Good luck with your "fight" Dave. We're all "with" you, even if you can't see us!

North Van Girl
Arlene

ninetoes's picture
ninetoes
Posts: 81
Joined: Jun 2009

Thanks Arlene. I guess the line I have is used a lot. I think it's just going to take some getting used to. The doc says the line will be in for at least a year, so maybe that's wht she chose the chest line.

Good luck to you, and thanks for being here.

Dave

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

My Power Port is under my skin but it is raised and is very visible. I'm afraid to hug anyone because it sticks up so much. It looks like there is a marble (or should I say an aggie) under my skin. I also can see my tube, but it doesn't bother me.

Kim

Northvangirl
Posts: 3
Joined: Jun 2009

I liked your reply. Definitely good ideas. Some of the info DOES put you on a "downer" so I try to believe that I won't be one of the bad statistics.

I have Anal Cancer, Stage I -

I just tell everyone that I feel blessed that I feel so good. (In fact, I feel guilty when I know what others have experienced fighting different cancers!!!!)

On 4/21st I started my 1st Session - I had Mitomycin C given to me at the same time with an Anti-Nausea drug (Dexamethasone aka Decadron) thru my "picc" line (I forget the actual name) that was installed the day before my treatment started. That way, they were able to use an "Infusor" attachment (Like a mini baby bottle with tubing attached) and attached my "bottle" with 5FU & I get to walk around for 2 days while the drug drains into my system. I go back after 48 hours at which time the bottle should be empty, and they'll attack a 2nd bottle. After the 48 hrs. are over, the bottle is removed & the picc line gets hidden by some bandages. And, that is it!!

I ended up with a "smidge" of nausea & a "smidge" of a headache -- that I never would've given much thought to, had I NOT been on Chemo. (And I figure I get as many as 5 different kinds of headaches -- so this headache wasn't even on the scale!!)

BUT, I ended up getting THRUSH in my mouth, tongue and throat. BELIEVE ME - you don't want to get that. If you do -- get it treated right away. I was given heavy duty antibiotics (why is it when you have a sore throat you get huge horse pills to take??!!) AND, I was given a heavy duty mouth rinse & swallow that numbed the tissues. My tongue was so swollen, I could barely talk or swallow. I DO NOT want to go through THAT again.

That seemed to be the only side effects I had -- until I got carsick last week when I was a front seat passenger in my boyfriend's car. I've --NEVER-- been carsick before. So - I know that, for the time being, I will be driving everywhere!!!!!

My Radiation is much the same story. BUT -- I've 'suffered' from what I call a Yeast Infection times a Million!!! NO ONE wants to go thru this. BUT -- if it kills the Cancer, I'll do it!!!!!!!

Today I started Part 2 of my Treatment. I'd been given an extra week off between Radiation because I am blondish, so have sensitive skin. I am SO GLAD I got that extra week. I certainly felt more mentally & physically ready to start the Treatment again.

I just wonder, after all these years, why there isn't some sort of fabric that could be put on your skin so the rays would go thru it -- but not burn the skin!!!!

All my warm wishes to all,
Arlene

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

Welcome Dave to the sweetest little site there is. I have done oxy and xeloda and I have done 5FU without the oxy....very different experiences but I think anticipating your reactions is unwise because everybody really does do their own thing.

there is a pretty good search button here and you could plug oxy in and catch up on some of our posts over the past few weeks. Don't be surprised if you are scared stiff on the first day.....that's in many ways the worst one because you simply do not know what to expect. Once you get started the fear moves back and you can get on with your LIFE.

Don't rush....get nice and healed up from surgery and ask us anything!!!

All best wishes.
mags

ninetoes's picture
ninetoes
Posts: 81
Joined: Jun 2009

Thanks mags, this has been a very good experience so far. Yes, fear of the unknown. I remember sweating out my surgery, then waiting for the results of the biopsy, and now Chemo. I'm glad there are sites like this, a very scary thing to go through. It's nice to talk to people going through this (not that I wish this on anyone).

Thanks Everyone,

Dave

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

The port will feel better in a few weeks, I don't even feel mine anymore, I know the tube you're talking about is annoying though, I have one as well, which makes me look like I have this vein throbbing inside my neck, but it seemed to also go down abit. It will be tender to the touch for abit, I had the doctor prescribe me some creme that makes the skin numb there before they insert any needles in it, which works pretty well too..I gob it on an hour before I get to chemo, or for any blood draws, and I don't even feel the prick of the needles.

I get FOLFIRI, so no oxy for me, but I do get the Irinotecan is it? fatigue is the main thing with the chemo's though, tired, I feel most tired the day after the pump comes off, and then the next few days I seem to bounce back to myself again :)

Just rest when your body tells you to rest, and you'll be just fine :)

Hugssss!
~Donna

ninetoes's picture
ninetoes
Posts: 81
Joined: Jun 2009

Thanks Donna, it's reassuring to hear that about the port. I'll have to ask about the cream. I have had so many IV's and blood draws, it would be nice to numb up the site.

Thanks for the info

Dave

lmliess's picture
lmliess
Posts: 331
Joined: Dec 2008

I am freaked out about this mainteneance round of chemo but I see I will be in good company. I had my colostomy surgery March 10 for the rectal tumor and my liver resection April 9 for the liver resection. So Tuesday morning I will go for my first of 8 rounds of Folfox 6 with Avastin. The side effects are scaring me but at this point I need to put my head down and go forward. I have to remeber this if the final stage to NED to get any remaining nasty cancer cells out.

Wish me luck!!

Linda

ninetoes's picture
ninetoes
Posts: 81
Joined: Jun 2009

Good Luck!!!!!!!

Dave

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

Welcome aboard Linda. I will be joining you with several others. Good luck to us all. I have three days in a row.

Hugs! Kim

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I will be back on the same cocktail starting Wednesday and disconnecting on Fridays.

This is how the first six treatments went for me: I always tried to stay ahead of the nausea by just taking the nausea pills as soon as I got home on Wednesdays and continuing them throuh Friday am. I did not experience nausea keeping this up. I had senstivity to cold right away, cold sores in my mouth on the second treatment. The oncologist prescribed me some miracle mouthwash and it helped. By the 4th treatment, I was feeling a bit more tired and food tasted like nothing, no taste buds at all.. and by the fifth week my hands were turning purple, and I was having a hard time driving my self home on Fridays. By the sixth treatment, I was usually tired through the weekend, but was ready to go to work on the following Monday. My hair started thining around the sixth week.

I don't look forward to the chemo, but I know it's doable!!! This is a great site to get your questions ansswered, it helped me immensely and took some of the anxiety away.

Everyone's side affects are different, I wish you the best and wish for you NO or at least only mild side affects!!!

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

Don't be scared of nothing....after the 2 surgeries that you have undergone the post chemo is a cake walk....Keep that chin up and know that you are winning your battle and don't get down on yourself if ya get a little sick or a lot sick....That just tells ya that its killing anything that might be lingering around...and then when its over (and it will be before ya know it) you can stand tall knowing you kicked its booty !!!

and Ninetoes......you are keeping good company here...you too will be fine my friend...

ninetoes's picture
ninetoes
Posts: 81
Joined: Jun 2009

Thanks Buzzard, it helps to know there are people out there going through the same thing. Good luck to everyone!

Dave

tiny one
Posts: 467
Joined: Jan 2009

I had this course of treatment. I had 5 1/2 wks of 5FU with radiation. I had a mediport and had chemo 24/7. Then 6 months of chemo, this time it was oxiplatin. This was twice a month with the pump on 2 days. My side effects were very mild. I was able to be very active all during the treatment. Oxi make you extremely sensitive to the cold. It would weart off after about 5 days, then it was eat ice cream, and have ice in a soda. I had stage 3 colon cancer, with 1 lymph node testing positive. My last chemo was Oct 31,07. Scans have been clear so far. 12 cycles will go by fast. Good luck, be sure to pamper yourself during this time. We're all here to encourage you.

brandy0112's picture
brandy0112
Posts: 5
Joined: Jun 2009

Hi i am new to the board. i have been on chemo since march and use the oxiplatin and 5 fu. My side effects were pretty bad in the beginning but my doctor added emend and dexamethasone and the nausea went away. I have til august to complete my therapy unless my platlets drop below 100 then they give you an extra week in between treatments. i go every two weeks for a 2 hour treatment then go home with a bottle for 46 hours then have a nurse come in and unhook me. It took me a long time to get used to my port and the bottle. the fatique was the hardest to adjust to for me. But they told me to try to keep as active as possible and I wont mind it as much. I wish you luck with your treatment and hope your adjustment time is short.

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