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New to forum, starting chemo (oxilaplatin and capecitabine) on April 24

SandiaBuddy's picture
SandiaBuddy
Posts: 1183
Joined: Apr 2017

Hi:

I found out I had a tumor in my upper colon on February 7, 2017. I had it surgically removed on March 22.  The lab work showed I had Stage 3 cancer with 3 of 27 lymph nodes affected.  I guess that makes me T3 N1b M0.  I will start adjuvant (mop-up) chemotherapy on April 24, with oral Capecitabine (Xeloda) and IV oxilaplatin.  I am an otherwise healthy and active 58 year old man.  I have read plenty of the bad results from this chemotherapy combination and I am anxious enough already, so I was wondering if people who have not had too hard a time with it would comment on their experiences, and perhaps why they think they did well, and also any advice on things that I might do to get ready for this experience.

Thank you in advance for your help.

Buddy

 

 

 

 

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

I wish you luck as you start your chemo jouney.  

I can't comment on the treatment, as I think I had about every side effect in the book, so you don't need to hear from me, but there are several folks here on the forum, who did very well Oxaliplatin and Xeloda (I was on the Oxi and 5FU infusion) and I'm sure they will be happy to help you along your way. 

TRU

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Welcome. I didn't have that combination, I had Folfox. The oxilaplatin was unpleasant with the neuropathy side effects but it's different for everyone and having to do it now that spring is here will help. It takes weeks for it to show up and once it's warm out I don't think it would be nearly so bad. I had it in the winter and it was not fun. Maybe you'll be one who doesn't react badly. I hope so!

The only thing I can think of is to get a pair of gloves that you can use easily that will insulate against the cold. You might want to hurry and get a few pairs of those stretchy knit gloves that are one size fits all. I don't know if you'll be able to find them now that winter is over. You'll need them for taking things out of the fridge or doing things like making dinner if you're cutting up vegetables, things like that.

I'm on Xeloda right now and have been on it for a week and have had no side effects at all. They said diarrhea but I have an ostemy so it doesn't matter. No stomach cramps or anything like that. I don't feel tired or anything at all. Actually, I feel pretty good. I hope it's the same for you!

I was also stage three when I was diagnose over three years ago. Three out of eleven lymph nodes were positive. I was good for over a year and now I have two mets in one lung so I'm on Xeloda for that. Only one is growing.

Jan 

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

Sorry you are here, but a good place and people.  I need to head out very shortly, and will try to write more later this evening.  Like JJ I had Folfox.  I did fairly well with it.  If you click my profile I have some details.  To add to what JJ said, if you have issues finding gloves, I actually used some gloves I got at Lowes.  They have various thickness/heaviness and those were the ones I used, including sometimes sleeping with them.  Try not to worry too much and do whatever you can.  Even if going out to get a cup of coffee for a bit.  

SandiaBuddy's picture
SandiaBuddy
Posts: 1183
Joined: Apr 2017

Thanks for the comments.  I have several pairs of soft winter gloves ready to go, as well as thick wool socks.  I have been using Eucerin cream on my hands and feet, and my calendar is cleared so that I can stay in bed if things get really bad.  Hopefully the warm weather will also be to my advantage.  I guess in life I always try to hope for the best and prepare for the worst.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Great! Just make sure you have thin gloves that you can do things with. I was on it in the winter and was often shocked at what would set it off in the house which was warm. Things like door knobs and not only things in the fridge but the fridge handle just to get into it. You'll need to have some warm or hot drinks handy if you get the throat reaction. Anything colder than room temperature sets it off.

Good for you for being proactive!

Jan

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

Well, I can't tell you what to do, so let me re-word that.  I stayed out of bed. There, that sounded less commanding.

No matter how bad I felt- and believe me, I felt bad - I always got out of bed.  Some days I didn't make it off of the couch, and some days I didn't get out of my night clothes, but I did get out of bed. For me, it was part of the mind game we have to play when things get bad. 

Stay as active as you can for as long as you can. Sometimes, looking back, I wonder if I had just pushed myself a little more, I may not have suffered as much as I did. Oh well! Can't change anything now. 

Good luck! 

TRU

 

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

Back and can add some more :)  Not sure if you read my profile.  I am in generally good health, no medicines, conditions etc, other than this cancer thing.  I was also lucky with good blood work.  So I went out as much as possible.  I am a sports junkie and love baseball.  Near a minor league team and went to close to 60 games.  There were some days when I was tired and took a nap.  And some days when I forced myself to get past intertia.  Getting to the park and walkling around got some exercise happening and just put me in a great mental state.  And yes, I would be walking around the stadium with a chemo bottle under my shirt.  

The timing worked out well for me in that about 7 sessions in I started getting REAL tried about two days after disconnect.  And would sleep close to 40 out of 48 hours.  But the team was on the road :)  One of the things that is most important it try not to worry or dwell on this s--t that has been handed to you.  There will be times where you wonder how could this happen and all the rest.  It is normal.  Just try to not think too long about it.  Kick it to the side and be positve.  Also spoil yourself a bit.  If you want to watch a silly comedy in the middle of the day, do so.  

The week I was on chemo was the time when I dropped a bit of weight, was fortunate not nauseous, but not hungry.  So I had ginger snaps guilt free.  The second week I was eating normally.    

The warm weather helps for sure.  I had a touch of each possible side effect,  but limited.  On day of hiccups, one day bad bowel movements.  I did lose body hair, and realized one day I I had no eye lashes.  LOL.  The two big ones were neuropathy and the cold sensitivity.  Sometimes even with a scarf over mouth in air condition.  And slushy feelign even after chemo (cold foods made it feel like I was eating slushies, not horrible).  The week on chemo I did get careful with drinking cold things, would bring it to room temperture with small sips.  Week off was easier. 

Again different chemo than you, but the Oxi is the neuropathy and cold culprit.

Make sure to hang out and ask questions during all of this, you got this man.  And I am not going to be polite like Tru, STAY OUT OF BED!!!  ;)  

Tunadog's picture
Tunadog
Posts: 235
Joined: Mar 2017

The main problems I've had was the Peripheral Neuropathy which started near the end of my treatment.

I've gotten the feeling back in my hands (pretty much) but my feet are still a problem.

Good Luck!

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

I liked being on Xeloda rather than the 5-FU pump.  I was less tired and able to work more.  I only took off infusion day and worked and worked out the rest of the time.  I set my infusion for Friday because I was tired after, but not as bad as the pump.  Xeloda is the pill form of 5-FU and you take the pills twice a day for a week.  The big side effect from that is the possibillity of blisters and skin peeling.  Use a good, rich thick lotion.  I liked Gold Bond Aloe, but everyone has their favorite.  Put it on hands and feet religiously, morning and night to minimize problems.  Wear good fitting shoes and socks to prevent rubbing.  I once got a huge blister at the gym and couldn't use the treadmill for a couple of weeks. 

The  oxilaplatin causes neuropathy and cold sensitivity.  Wear gloves and I even wore flip flops in the shower to keep my feet warm.  All food and drink at room temp or higher.  Are you going to be on Avastin as well?  It helps by slowing the growth of blood vessels to provide food for the tumors.  Most people get it along with Xeloda.  One former member used to drink cold water while being infused with the oxy and it prevented a lot of the cold issues.

Best of luck to you, I hope your side effects are minor and tolerable.  Traci

 

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

I second what everyone said about keeping your hands and feet warm  while on the oxaliplatin. I kept a pair of new,clean gardening gloves in the kitchen  specifically for  handling cold things and for reaching into the freezer. The gloves are lightweight stretchy nylon on the backs but have a nitrile coating on the palms and fingers so they allow maximum movement but effectively block out the cold when handling frozen food.  I  was never on the Xeloda so can't help there, but hope  your treatment goes well with minimal side effects.

Grace/lizard44

SandiaBuddy's picture
SandiaBuddy
Posts: 1183
Joined: Apr 2017

Thank you all for your comments.  I love to be active so I will try to stay out of bed as much as possible.  I have clothes ready for the cold.  It is just that there are so many unknowns, it gets frustrating.  And today I learned my "copay" for two weeks of capecitabine is just short of $1,100USD.  Ugh. I guess I need to get through the treatment and then deal with the financial issues.

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

Only if you think the stress is going to affect you now.  If it is something where you can say screw it and deal with it later, that could be easier.  On the other hand, if you tend to stress and trying to address it can help reduce stress by at least trying...go for it.  Many facilities will have programs with finanical assistance, like MSK can set up payment plans and the rest to make it easier.

This issue has come up here in the past and hopefully others can chime in.  But there are various programs which can help with the payments.  I wish I could remember the threads from about a year and a half ago.  Maybe others will recall it or be able to provide some information on it.  Depends on the State and other factors...

beaumontdave's picture
beaumontdave
Posts: 1164
Joined: Aug 2013

I'm one who had relatively mild effects from the Folfox/pump regime, limited to some nueropathy in hands and feet, cold sensitivity in my hands and throat, and fatigue, especially when it was real warm[SoCal area]. I'm a contractor and to keep working was a necessity, but I believe it kept my focus off how every little thing felt, and helped my body pump it through, if that makes any sense. As the others stated, getting out of bed and doing, certainly helps you past the mental/emotional aspects of doing chemo. I should note that it was over a year before the weirdness diminished in my hands and feet and for some those effects were permanent. A lot of it may just be luck or makeup, things not in our control, but mindset and determination are also a big part of all of this. Good luck to you...................................Dave

PamRav's picture
PamRav
Posts: 323
Joined: Jan 2017

sometime have programs to help with the cost.  Your oncologist or the financial counsel at your CA center should have info on these.  

Good luck with your chemo. 

Amanda09's picture
Amanda09
Posts: 2
Joined: Apr 2017

I'm also new here.  I am on oxaliplatin and capecitabine.  I get the oxaliplatin every 3rd Monday and then take the capecitabine twice a day for two weeks, then one week off before starting again.  The capecitabine doesn't seem too bad.  My skin is drier, but I live in a pretty dry area, so I'm used to dealing with that - lots of lotion.  The oxaliplatin is a bit rough.  When I first started getting it they gave it to me over 3 hours.  The cancer center I go to changed the way they do it and now I get it over 4 hours and that's much better.  I used to leave feeling woozy, and now I feel alright.  The cold sensitivity is pretty bad for me.  I choked on a pill once because I used luke warm water.  Now I know I have to drink only warm or hot water for a few days after the iv.  The arm I get the iv in is sore for a few days after as well, so I always get it in my left arm because I'm right handed.  I wear slippers around the house, and a big sweater.  I know I won't put gloves on to get things out of the fridge, so I pull my sleeves down over my hands.  Where I live gets really cold in the winter and when I leave the cancer center after the iv if it's really cold I have to cover my nose and mouth to breath when I'm outside, but that usually only lasts a day or two.  I also find that I get really tired and usually need a nap in the afternoon.  I usually feel a bit off (mostly low energy) for a week - week and a half, then I feel good for a week and a half - two weeks.  I try not to plan much for the week of iv chemo.  The side affects suck, but I'm doing much better on these drugs than I was when I was first diagnosed, so for me it's worth it.

I agree with the people who are saying not to stay in bed.  If I'm tired I take a nap, but I try to be as active as I can.  I think it does help physically, but it also really helps me mentally - I feel more normal when I'm up and doing things.

EissetB
Posts: 135
Joined: Apr 2017

I am pretty new on this forum. Reading questions, answers and feedbacks made me feel very comfortable due to my illness with colon cancer stage 3. Just started FOLFOX on April 14/17. I had my port-a-cath implanted a day before my first infusion. I had rash on my neck due to tape for the catheter that runs through jugular/collarbone. Since I am so skinny it seems like it's a tendon protruding on my skin. Very scary sight (to me). I kind of wonder if this will go away soon. I truly can relate with your feelings along with the experience of the financial issue. I had to quit my job due to my chemo therapy. Mine will last for 6 months in 12 sessions. God bless us all troopers!!

PamRav's picture
PamRav
Posts: 323
Joined: Jan 2017

i found that even though I received the same drugs each time, every session was different.  sometimes severe nausea and sometimes not.  Sometimes exhausted to the bone, other times not so bad.  Everyone here has provided really good advice for you   I just add to be flexible  if you feel like crap take a nice nap, if you feel goodish then go for a walk, you'll just need to accept how you're feeling that day (hour, minute...) and go with it  I used to get very frustrated when I felt terrible but that got me no where.   

All the best

 

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

 if you feel goodish 

I would LIKE this if there were a button. 

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

I was on both plus Avastin for 6 treatments (later on just Xeloda and Avastin).

The oxy caused this weird cold sensitivity and "first bite" syndrome - temporarily feeling like there were glass shard in your throat - but very temporary.  Both went away after a few days.  I'd come home from chemo with my fingers tingling, but not really painful.  I did not have a port and after a few treatments, my infusion arm would feel sort of numb and tingly - went away in a week or two  and was totally tolerable.

I was on the 2 week on/1 week off Xeloda plan with oxalilatin every 3 weeks.  At that time I was only working M-W (not related to chemo).  I had chemo on Monday, took the next 2 days off and then worked for the next 2 weeks with no problem.

 

Hope this helps.

beaumontdave's picture
beaumontdave
Posts: 1164
Joined: Aug 2013

Don't know that I'd seen you post before, but I'm glad you filled out the profile so I could read your stage 4 survivor story. It inspires, congratulations....................................Dave

gsmith53
Posts: 27
Joined: May 2017

Yeah. I forgot to mention that. That was probably the most annoying thing. I would eat a bananna in the morning. Who would have thought that a bite of a bananna would give me a shooting pain in my cheek. Only the first bite. It's really weird. But, I've gotten used to it.

blessed39's picture
blessed39
Posts: 91
Joined: Dec 2016

It's been quite a while since I had chemo, but I think it was oxaliplatin that

caused the electrical shock when touching something cold. I was warned not to eat or drink

anything cold as it could swelling. I actually responded well to avastin. I wrote my

story on my blog entitled "How I Beat Stage Four Colon Cancer" if you would care to read it.

I hope my experience will give you hope and peace of mind. God bless you on this journey.

blessed39

EissetB
Posts: 135
Joined: Apr 2017

I now have port-a-cath, and will be on six months FOLFOX treatment 2x a month session!! Ever since I came to live here in USA I only gotten sick 3x with flu. Then here I am, diagnosed with colon cancer stage 3!! I was shaken when the onc revealed the findings. They cut 8" with 2 massive tumor. Resection done, but port-a-cath implanted for FOLFOX treatment. 1st session was done on April 14, the second session will be on the 28th of this month. I have 12 treatment sessions for 6 months. I have minor reaction from the first session. My glands were tender when chewing which lasted for a few seconds. Other than this I'm okay, I guess. I am now scared for the coming sessions. I kind of wonder if reactions are different in every sessions

marbleotis's picture
marbleotis
Posts: 715
Joined: Mar 2012

Welcome and sorry you are here.

I was stage 3b signet cell and am now over 5 years NED  My Onc just released me from care this week.  So I am thrilled.

What I had was the surgery, then 6 months of Oxcilipaltin and 5FU.  I still have the after effects neuropathy but I am still here.

Do not think about all the up coming sessions.  Take one at a time.  You can and will get through this.

Keep us posted, this forum is a great place for support, info, sharing and just because.

Enjoy all your milestones, like chemo #1 is done, then #2 and so on.............

Bellen
Posts: 281
Joined: Aug 2016

I have white bone cell shots five days in a row after 5 Fu bottle comes off.  I did not have much coverage for these very expensive shots - the drug company provided several vials for compassionate reasons, so this is definitely something to look into, if you do not have insurance coverage for drugs that you need.  Best wishes.

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