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Anybody had these? Eloxatin/ Oxaliplatin- Fluorouracil (5FU) Leucovorin - Avastin (Bevacizumab)-

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

Start chemo on Monday and this is the list of drugs the doctor gave me. He told me I shouldn't have any problems other than sensitivity to cold. Anything else I should look for? Don't want to fight any demons that won't be there, but I still worry.

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

I can't answer for Avastin because I wasn't Stage IV and didn't have that, but there are many other side effects with FOLFOX (Oxi and 5FU)

I assume you'll wear the pump home for 46-48 hours. I felt really icky for 2 or 3 days after the pump was removed but that didn't start right away. Neuropathy in hands and feet comes from the Oxi. I'm 7 months post chemo and my fingertips still are numb/ tingle. My feet feel like I have wet sand in my socks. That's a great improvement tho.

HOWEVER: Chemo is not the horrific thing of yesteryear. I never threw up and only felt queasy during my last 2 tx's. I took the pills for nausea and it went right away. I had heartburn and took OTC meds for that. The steroids given with chemo to keep you from reacting made me feel flushed and hyper for a good 24 hours. Some people can't sleep. Oh, I had constipation after each tx until I figured out to eat Raisin Bran the day before, day of and a few days after. I was very uncomfortable with constipation! I had to get up and pee 6 or more times during chemo but you just take the pole with you. My hair thinned but that was it. My avatar photo is three months out of chemo.

For the days after chemo, drink LOADS of fluids to flush the chemo out of your kidneys. Sleep in you feel tired. I am not one to stay in bed so I'd doze on the sofa.

Take a book and some word search puzzles. My onc had TV's to watch and loads of magazines. We sat in very comfortable recliners and had phones to use, coffee, tea, juices, soda (why do they refrigerate all their drinks when they KNOW we can't drink anything cold?) bottled waters and loads of snacks.

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

Thank you so much, this is the kind of info I REALLY need.

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

But I had the others. Like you probably know, keep gloves next to the freezer or have someone else pull that stuff out for you. I drank a lot of green tea, room temp water and juice. The first couple chemos made me nausea but I told them and they adjusted my nausea meds so no vomitting after that. Thankfully the weather is warmer now, I went through part of my chemo in winter in MN and it was murder. When I had the pump I found it easier to wear button down shirts than ones I had to pull over my head, same for pajamas. I think you will be just fine, chemo was not as bad as I thought it would be, I continued to work throughout it. Good luck to you and keep us informed on how you are doing. Oh also I hardly lost any hair, you could hardly tell.

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

Thank you for the reply, hadn't even thought about the best clothes to wear so they can give me the drugs.

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

I also would take one Antivan 1/2 hour before chemo treatment, brought ear plugs, and one of those sleep masks for the eyes. And I would sleep through most of my chemo. If I could not sleep I brought a book from the library called Crazy Sexy Cancer Tips, it was useful to read. Since I could not shower with the pump, I would just wash my hair in the sink those days I did not try bath with the pump.

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

I just had a port put in, so I guess that is different from a pump???

damama24
Posts: 175
Joined: Nov 2009

I also have a port but still have the pump attached as they infuse the 5-FU over a 46 hour time frame. It's kind of bother some at first but you get used to it and the time goes by pretty fast. My youngest son removes my pump at the end of infusion. Some people are not comfortable doing it themselves but I didn't want to make the 45 minute drive to the cancer center for something that takes only a few minutes to do. Deb

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

Like someone else explained, the pump plugs into the port, I had a power port. Had that removed 3 months after chemo stopped. I had some jaw pain when I would chew, it went away about half way through my chemo, noticed my nose would run more too. Keep your Onc informed of all side effects you have. I still have numb finger tips and feet, last chemo was 6-23-09.

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

What is the difference between a power port and a regular port?

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

All of the above but I will add another. Fatigue, my husband was very fatigued. Just give in to the fatigue and get lots of rest if you need it and don't overdue, go to bed early if you need to. As far as nausea, as an encouragemet, I might add that my hubby never had nausea and never threw up from the chemo. He had a nausea pre-med drip (Anzamet)before chemo drug actually started. Everyone is different. In addition, he also worked full time while on this chemo regimen only missing work about 1 to 1 1/2 days every other week. He did receive his infusions over a 2 day period instad of 1. About 3 1/2 hours first day and 1 hour second day, disconnect from pump on day 3. We were anticipating the worse case scenario and it just didn't happen. His appetite was excellent and he would come from chemo asking what's to eat. He was able to drive himself, after my going with him the first few times, he said it wasn't necessary for me to take off work to accompany him. He did very well with these drugs and had many of his mets disappear and the rest showed, "onc's words" significant shrinkage. Take a deep breath your journey is just starting and come back and ask anything you want, nothing is too big or to small to mention and someone will come on and share their experiences and answer your questions. George completed all 12 treatments over 6 months and is now on what we call "chemo light" Take care - Tina

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

Thanks for the reply. Good ole fatigue. Just what we need with all we have going on.

bdee
Posts: 305
Joined: Feb 2009

The only thing I'm not taking now is Oxi; mainly because it almost killed me. It was so bad that I went for three months without being able to eat solid food. My doctor told me out of 70 people taking all those drugs me and one other "older" gentleman could not take the oxi. After two treatments I lost all my hair, couldn't stand the cold, was throwing up after each meal and couldn't drink anything even room temperature. Everything had to be hot or it made my throat close up. After four treatments of oxi, my doctor took me off, then it took three months to get it out of my system enough that I was able to eat solid food and touch anything cold. It has been 11 months and my finger tips are still tingling and my hands are still peeling.
I get four pre-meds for nausea now and I'm still sick one or two days after chemo and I take 5FU, Avastin and Leucovorin. I don't have the pump, I just go in every two weeks and stay for a couple of hours. I sleep during my chemo treatments because as soon as I get the phenegran, I'm asleep. I don't wake up until they are flushing me after giving me Avastin and I have to call my husband to come pick me up.
Good luck and remember, what happens to me does not happen to most. But then again, I don't have a cancer that most people have. Appendiceal cancer only happens one in one million.

Debbie in Arkansas

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

One in a million, great! Why couldn't it be something good? Anyway, thanks for the info.

zenmonk
Posts: 198
Joined: Nov 2009

With them came sensitivity to cold. Permanent nerve damage in my feet and hands,and ALOT of nausea. I was hospitilized about 5 times for side effects related to chemo. I didnt realize how bad I really felt at the time. Now that I am off chemo I can see how bad I really felt. Keep good communication with your doctor and nurses about side effects and dont be afraid to go in and get checked out if your instincts are telling you thats what you should do.

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

Thanks for replying, I need to hear all of this.

damama24
Posts: 175
Joined: Nov 2009

I had very few side effects. The oxi caused sensitivity to cold and messed with my blood counts. I'm no longer getting oxi but am getting everything else along with a phase one trial drug. I do have some neuropathy in my hands and feet but it is getting better every day. Never had much nausea, but did lose my appitite and had to make myself eat sometimes.But in the last month my appitite has returned and I have felt much better more energy and better mood. Think the spring like weather is helping there. Just make sure to let your Dr. know whats going on with you no matter how minor you think it might be. Everyone has their own unique experience with chemo some breeze through it with no problems and some have major side effects. Hoping you breeze through it. Best of luck to you and yours. Deb

SERRIN
Posts: 14
Joined: Apr 2010

I went back to work and it was the worst pain ever felt in my hands and feet.Doc put me on
Lyrica. It makes my nerves in hands & feet number so it is not as painful but I am losing dexterity. Would like to talk to others about this.

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

Yes, I had all of that.

A good tip I had re Oxali was to use plastic flatware. Metal hurt my hands. (Wooden chopsticks are good, too.)

Most ppl get diarrhea from 5fu - I was told to keep immodium handy and use it at the first sign. I was constipated, and had to take senna and colace throughout.

Keep your hands and feet well moisturized - 5FU can cause Hand-foot syndrome, with neuropathy and splitting skin. My oncologists recommended Udderly Smooth or Bag Balm (yes - farm treatments). The Udderly Smooth is cold cream based and nicer, bag balm is vaseline based and greasy. Both available at pharmacies.

Be gentle on your bottom as well - an anal fissure resulting from chemo added to my grief, and wouldn't heal until 8 weeks after chemo.

5FU can also cause chemo-brain, so you may become forgetful. It doesn't happen to everyone - I escaped it, but I saw it in others.

I also was advised to rinse my mouth 3-5 times a day with 1 tsp salt + 1 tsp baking soda in 1 cup warm water. I had few problems with mouth sores, and I think that doing this religiously helped.

It's not going to be fun - this is an endurance test. Get through it, and get beyond. Tell your dr about any side effects - they'll modify the chemo if they can.

Good luck!

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

An endurance test, you are so right! Thank you so much for the reply and information.

Lisa_R's picture
Lisa_R
Posts: 59
Joined: Oct 2009

i am stage 4 and did your list of drugs --- it saved my life.. the drs told me i had too many tumors to count and i am now cancer free(NED) after a liver resection cut the last of it out.... if you get sick or want to feel "normal" and need to boost your eating try marijauna--- it works i swear better than anything the drs gave me...i did become allergic to the oxy after time and you will get sick for that--- but i was on high doses--- if you can see about cerbitux-- i was on that as well--- good luck and god bless

lisa

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

my best advice is get started and see how it goes. I have done your drugs and there will probably be more than cold sensitivity but just wait and see. Try to enjoy you weekend. i feel like an an old lady repeating myself but I always say anticipating chemo is hard work....no one thinks they can do it and we can and we do. Wait and see on Monday how it goes.

best best of luck and hugs for Monday...

let us know how you do....

mags

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

I've had all of these. I coped fairly well with them all. Not much to add to what has been shared already. Take it easy, enjoy a mid-day nap, it will be finished before you know it!

Good luck on Monday... Rob; in Vancouver

soccermom13's picture
soccermom13
Posts: 226
Joined: Feb 2010

killed me. I guess I was too sensitive for it. Had the cold reaction but it was worse in my throat. I had to micro everything to drink and used plastic ware also - the metal made me sick. After 2 treatments with major diarrhea and vomiting, I become almost comatose, like I could sit on the couch but not move. Midway through the second treatment I couldn't swallow the pills. DR told me that only a handful of patients cannot take the pills. Switched to the 5FU and something else (can't remember the name off hand) and it was tolerable until after the 5th of 6 treatments when I just could not do it any longer. Mentally/physically I was spent. TELL your DR about all your symptoms and they will try to make it easier on you. Good luck and remember that it will be over soon.
Hugs!

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

I just had my pump taken off yesterday.. first round same as you..day 1 my stomach hurt untill 7:00 p.m. couldnt eat or drink anything cold, I had diaareha later in the evening.day 2 I felt o.k. ate a good supper got a nap or two in..day 3 I had the pump taken out at 11:30a.m. I felt BAD all day..today I slept all day.. ask for zofran... it seems to be doing the trick for me with the nausea..
At one point I told my wife I feel so bad there is no way I can do 11 more.. but you have to do it!! you got to be strong!! its great to have the support from everyone here!
We are only a few days apart on our treatments... you hang with me and we will party like rock stars when we finish!!! DEAL??

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

good for you! you did it....there's one down. Please don't think eleven....enjoy your days between treatments. I think most of us find getting edgey and cranky right before the next round...don't worry about that yet either....enjoy today

well done Mark!!!!proud of you....baby steps

mags

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

Party like rock star! DEAL! Let's hope we can Mark. Thanks for the info on your episode. I go in Monday at 10. Told me it would be all day. Gonna give each drug separately and slowly, then speed them up some each time.

We do have to be strong, we don't have any alternative.

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

I don't have any other side effects to add... My first day of chemo takes about 5-5 1/2 hours. I'm sure yours will too. Love to you. Believe me, if I can get through this, so can you!! I'm a big ole baby!

Holly

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

Big ole baby.... no one that gets through all of this should be considered a baby! It takes a lot of strength and fortitude. Thanks for caring.

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

I think we are strong because we are, alternative or not. The people I have seen go through cancer define grace under pressure.

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

If it makes you feel any better, my first chemo was my worst. I don't know if it's because your body is invaded by toxins and they need to get used to it, but after that, it's not so bad. I think I've tolerated it pretty darn well. :)

Can I party like a rockstar with you guys? :)

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

Can't have a party with guests! Can't wait till I feel like having a party. Let's start the guest list now so we can Party LIKE A ROCK STAR!

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

Mark, starting my second treatment. Really tired this time but I had developed a Urinary Tract Infection UTI, and think that had me down some too. So started the second treatment not really up to par. So far so good, but this cold sensitivity is BAD. Can't imagine having it in a cold climate. Thankfully, our weather has been really hot here, 90 degrees today, so only thing cold I get is out of the fridge! Drinking cold stuff really feels strange in my mouth, so I leave it out to get to room temp. Also, my sleeping has been really disrupted. Dont know if it is the pump annoying me or just the chemicals making my body unhappy. Sleep has been difficult. Get the pump off tomorrow, and I will be ever so happy about that.

Think of you Mark as we walk through this process together. We don't have any choice.

PCQ

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

I always knew that my nights with the pump were Ambien nights. I figured I needed all the help I could get, and trying to sleep and not get tangled up was beyond me. My drs supported this.

Yes, I had oxaliplatin during a NY winter - couldn't button my buttons. Needed my husband to warm up the car before we went anywhere, and I couldn't drive myself because I always needed the car ready for me (warmed up.)

Even holding silverware hurt, so I started using the heavy duty plastic stuff or wooden chopsticks. I couldn't hold a china plate - even at room temp they feel cold. At least the cold sensitivity subsides eventually.

Good luck. I know how hard this is.

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

Good luck tomorrow. You'll do fine. Relax and go with the flow. Let us know how it goes. We're all here for you and with you.
Roger

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

Had a few difficulties. First, my port got infected. Dr told me he may have to take it out and start over if the infection didn't clear up ASAP. Scared me to death. Went home took the antibiotics, even sat in the sunshine hoping it would help kill the germs, plus it made me feel better cause it was a beautiful spring day. Seemed to be doing better but two drs had to look at it to make sure. Still slightly swollen, red, and warm to touch so nurse was concerned. BUT....when she went to put the needle into the port... OUCH! "May hurt a little'" she said. That was a gross under estimate. It hurt really bad! She had to 'manipulate' the port to start the connection. Did I say it HURT REALLY bad??? The needle they use to connect me to the IV has a hook on it and she has to manipulate it to get it connected so it won't come loose. The first try didn't work. OUCH!! The needle kept popping out, so she had to undo and get another needle and start all over. OUCH!!! OUCH!! OUCH!!! Finally, she got it connected and I was ever so thankful for that. By this time, I was sweating and wishing I had one of those pumps the hospital gives you with pain meds in it and you mash the button. I would have been pounding it. She was really sorry she had to push so hard but the tissue is still swollen around the port site and it was what had to be done. So, that was my first day 30 minutes in the drip room and I still had to take the meds. That all went well, so far anyway. Brought home my pump, hope I don't get tangled up in that during the night in my sleep, if I can sleep. The port site again really swollen and giving me lots of pain. It even causes me not to think about the other pain I have from the darn colon cancer that is on my sciatic nerve/sacrum. I am one of those lucky people that had it return in the most unusual of all places, where they can't operate without making me a paraplegic and still not guarantee they had it all, so they decline surgery and here we are. Being on the very sensitive nerves S2 and s3 gives me all sorts of problems,but today, all I thought about was the darn port! Maybe tomorrow will be better, if I can go to sleep. Thanks for all the cautions, suggestions, and concerns. I'll keep you updated on my saga.

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

Had a few difficulties. First, my port got infected. Dr told me he may have to take it out and start over if the infection didn't clear up ASAP. Scared me to death. Went home took the antibiotics, even sat in the sunshine hoping it would help kill the germs, plus it made me feel better cause it was a beautiful spring day. Seemed to be doing better but two drs had to look at it to make sure. Still slightly swollen, red, and warm to touch so nurse was concerned. BUT....when she went to put the needle into the port... OUCH! "May hurt a little'" she said. That was a gross under estimate. It hurt really bad! She had to 'manipulate' the port to start the connection. Did I say it HURT REALLY bad??? The needle they use to connect me to the IV has a hook on it and she has to manipulate it to get it connected so it won't come loose. The first try didn't work. OUCH!! The needle kept popping out, so she had to undo and get another needle and start all over. OUCH!!! OUCH!! OUCH!!! Finally, she got it connected and I was ever so thankful for that. By this time, I was sweating and wishing I had one of those pumps the hospital gives you with pain meds in it and you mash the button. I would have been pounding it. She was really sorry she had to push so hard but the tissue is still swollen around the port site and it was what had to be done. So, that was my first day 30 minutes in the drip room and I still had to take the meds. That all went well, so far anyway. Brought home my pump, hope I don't get tangled up in that during the night in my sleep, if I can sleep. The port site again really swollen and giving me lots of pain. It even causes me not to think about the other pain I have from the darn colon cancer that is on my sciatic nerve/sacrum. I am one of those lucky people that had it return in the most unusual of all places, where they can't operate without making me a paraplegic and still not guarantee they had it all, so they declined surgery and here we are. I even went to Mayo Clinic in Rochester and they said no, too dangerous. Being on the very sensitive nerves S2 and s3 gives me all sorts of problems, but today, all I thought about was the darn port! Maybe tomorrow will be better, if I can go to sleep. Thanks for all the cautions, suggestions, and concerns. I'll keep you updated on my saga.

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

There is an EMLA cream you could get prescribed to you, which will numb the whole port area...it's heaven! You put it on real thick, around the whole port area about an hour before you get it accessed, just glop it on, and then put a piece of saran wrap on it so you don't get it on your clothes, then when they go to access your port with that needle, they will take the saran wrap off, and wipe it down to clean it, and you will feel NOTHING when they access the port. It's a great topical numbing cream. I'm sorry to hear it may be infected, that sucks, I had a port taken out, when I ended up with an infection in my body, and while searching for where it was coming from, they took the port out, which wasn't even infected! so they put it back in on the other side (a newer power port) and my infection came from a wisdom tooth!But now the only problems I have with that port, is it doesn't want to give blood back, unless I sit there while they use apolace or something like that, and then it will come through.

I'm not taking Oxy, I take the Folfiri chemo (Irinotecan) and wish you luck on your chemo treatments. I been doing them since Last Feb, and still here, it's saved my life though so far, and probably would have been dead already without it, but the liver tumors are shrinking, though I'm still inoperable, and probably will be on maintenance chemo for the rest of my life.

Good luck, and stay on top of those anti-nausea meds, even if you don't feel sick, take them anyway, I take my anti-nausea meds (Emend, dexamethasone, and a long lasting 4 day Zofran shot, and compazine) before I get the chemo, and then all during the treatment, I have the emend, dexamethasone, compazine and ativan to help me at home. I'll take them for 2 days AFTER I'm unhooked from the pump as well. Good Ole Maryjane is excellent for nausea as well, it works faster then the pills ;)

Hugsss!
~Donna

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

You give me hope Donna. My tumor is currently inoperable due to the location. I am hoping, though that will be difficult, that IF the meds reduce it enough, surgery may be an option, but highly unlikely. So, like you, I may have to live with this the rest of my life. Stories like you give me hope and you know how valuable that is when you hear the words that come out from our doctors! Will stay on top with the nausea drugs. Nurse cautioned me about it to. Stay in front of the truck she said, so it doesn't run you over. Wish I had a MaryJane connection!
Thanks!

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

I was going to sing the praises of EMLA cream as well - Shayenne has it right. For some reasons, drs don't remember to prescribe it. I, too, learned of it from other cancer patients.

And to emphasize how good that stuff is: I had to get chemo in my belly as well, and had a port placed just below my rib cage. I never felt the needles going in there with the EMLA (tho the IVs I needed during those chemo treatments were extremely painful.)

Queenie is right - cover with plastic wrap or tegaderm: you want to keep that thick cream in place for at least an hour before they access you, and you don't want anything absorbent like bandage over it. The idea is that you need that gob of cream sitting there to penetrate.

Hopefully, your port site will settle down. It should heal.

As for sleeping - pump nights were always Ambien nights for me. Guaranteed I'd sleep, and I'd position myself on a big wedge pillow. We have enough to go through without worrying about tangling, falling asleep, etc.

Good luck with this! You will be done sooner than you realize (an eternity only seems long while you're going through it!)

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

I think it would have taken a 55 gallon drum of that stuff to have helped yesterday! Short of sedation, I don't think I could have done anything. I had already taken two Dilaudads and they didn't help. Port site hurt all night and obviously, no sleep last night. Will just have to take it easy today and get rest. So thankful I don't have to go to work. Don't think I could make it very well.

So appreciate all the help and concerns.

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

Thanks Roger, guess you read my saga. Hopefully, the port will heal and I will have a better experience next time. Really noticing the cold sensitivity. Even brushing my teeth this morning....OUCH!

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

Ports are great, but when there are problems, it's a real bummer. Mine hasn't drawn in a few months. I'll need a new one put in, but since all the chemo was going in, my Dr. did not worry about it. The nurses did worry. My surgeon is focussed on my liver, not my port. I guess we'll deal with it at some point.

I think it's great that the port was the only problem. Sounds like the rest went well. You'll feel better soon.
Take care.
Roger

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

George had trouble with his first port, nothing out nothing in, after testing the tip turned in and was against the vein. Surgeon then put in a new port on the opposite side. This one works great but many times, no blood out. Rather than fool with it he just tells the nurse to take the blood from his arm. As long as chemo goes in that is all that matters. Tina

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

I hope things are going better for you today..I had a bad couple of days on the 2nd and 3rd days... I hope you will be o.k. it is weird sleeping with that fannypak..Im sure youll get up from a chair and forget to grab it..when they take it out it only takes a few minutes...the first full day without the pump I slept all day!! day 5 I started to feel good..( besides the constipation). yesterday I worked in the yard and today I feel great!! just try not to think of 11 more treatments.. just think you will be 1/6th of the way there!! Hang in there my friend!! Mark

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

Thanks for the encouragement Mark, I feel a little bummed today. Just no energy at all. Yep, glad to get the fanny pack off but wasn't too bad, and even better that it didn't hurt to take the needle out of the port! YES!! Hoping I will feel mucho better tomorrow. Too beautiful outside to spend it on the couch. And thanks again for checking on me.

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

Hope you are doing okay, just checking in.

lmchils57's picture
lmchils57
Posts: 60
Joined: Feb 2010

My son is on the same regiman and just recieved his thrid treatment today, so far he has not expereinced too many side effects yet. He has had some nausea the day after he is hooked up but other then that not doen too bad. I will agree with someone that said her husband has a lot of fatigue as that is one thing Scott has had also but there again it is basically only on the second day. His oncologists is very pleased to see he is not expereincing too many of the side effects though he did caution some could still happen as he goes along, this is his third of twelve. Just let your body tell you what it needs and listen to it but if you feel up to getting out and dong things and staying active it is really the best thing for you.
Any questions you have feel gree to ask here on the board I am telling you they have been a big help to me with learning what to expect. I am very glad I joined.

porkchopqueen's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

Got my chemo pack off today. Not nearly as traumatic as getting it put on. So far only side effects are slight nausea, pain in my jaw, and this awful cold tingling in my fingers etc. My husband got me some surgical gloves and they help quite a bit. At least allow for a little warning that it is cold and may be a problem. Thanks for all the suggestions!

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

A rare side effect, but I had it too. It was quite severe for me.

Good luck with all of this. It's a hard regimen.

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

I was just put on FOLFOX yesterday, since my new onc said my little tumors grew 1mm, and he wanted to nip it in the bud...so here I am on my first folfox regimen, pack will come off tomorrow (that's always the best part) and we'll see how I do after I'm unhooked...It hasn't been too, thanks to reading about Folfox here, I knew what most to expect, and am preparted with my gloves and socks. I mistakenly walked barefoot on my wooden floors though, not expecting to feel some kind of burning sensation, so wear socks always LOL...I am drinking and eating everything watm, the crystal light lemonade powder drinks taste good even warm! noe, my eyes burn alittle, don't know what to do for that but keep them closed, and then I won't see what I'm typing LOL..

Now he also gave me another option, something I haven't heard since I was diagnosed 14 months ago! he wants to break me from the chemo and do radio sphere, since it's contained in just my liver, and I was in shock! he wanted to do it ASAP, but I wanted to come here and ask about it first, make sure it be ok for me, so he only has me doing 4 chemo, since he said it's rare people actually make it to 12, and he doesn't want to leave me with alot of neuropathy, I don't really feel the tingling yet. My ribs hurt though, a slight pain when I yawn, or breathe in deep.

But I'm doing this with you, and never say never, I heard words yesterday that made even me feel better. I never thought I would ever have other options except for maintenance chemo for life..I'm still in shock, so you know there's always hope!!never lose that!

Hugsss!
~Donna

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