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

2

Comments

  • maglets
    maglets Member Posts: 2,576 Member
    mark440 said:

    Hi Queenie!!
    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??

    Hi Mark
    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
  • soccermom13
    soccermom13 Member Posts: 224
    I started with Elo drip with Xeloda pills and that almost
    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!
  • porkchopqueen
    porkchopqueen Member Posts: 37
    abrub said:

    Folfox + Avastin
    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!

    An endurance test, you are
    An endurance test, you are so right! Thank you so much for the reply and information.
  • porkchopqueen
    porkchopqueen Member Posts: 37
    mark440 said:

    Hi Queenie!!
    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??

    Party like rock star! DEAL!
    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
    HollyID Member Posts: 946 Member
    mark440 said:

    Hi Queenie!!
    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??

    Mark...
    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? :)
  • HollyID
    HollyID Member Posts: 946 Member

    Party like rock star! DEAL!
    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.

    Queenie...
    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
  • christinecarl
    christinecarl Member Posts: 543 Member

    Party like rock star! DEAL!
    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.

    I would like to party too
    I think we are strong because we are, alternative or not. The people I have seen go through cancer define grace under pressure.
  • Crow71
    Crow71 Member Posts: 679 Member
    Good luck tomorrow. You'll
    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
    porkchopqueen Member Posts: 37
    Crow71 said:

    Good luck tomorrow. You'll
    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

    First treatment
    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
    porkchopqueen Member Posts: 37
    Crow71 said:

    Good luck tomorrow. You'll
    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

    First treatment
    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
    Shayenne Member Posts: 2,342

    First treatment
    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.

    Hey Queenie!
    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
  • abrub
    abrub Member Posts: 2,174 Member

    First treatment
    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.

    EMLA
    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
    porkchopqueen Member Posts: 37
    Shayenne said:

    Hey Queenie!
    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

    You give me hope Donna. My
    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!
  • Crow71
    Crow71 Member Posts: 679 Member
    Ports are great, but when
    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
  • porkchopqueen
    porkchopqueen Member Posts: 37
    abrub said:

    EMLA
    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!)

    I think it would have taken
    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
    porkchopqueen Member Posts: 37
    HollyID said:

    Queenie...
    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

    Big ole baby.... no one
    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.
  • porkchopqueen
    porkchopqueen Member Posts: 37
    HollyID said:

    Mark...
    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? :)

    Can't have a party with
    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
    porkchopqueen Member Posts: 37
    Crow71 said:

    Good luck tomorrow. You'll
    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

    Thanks Roger, guess you read
    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!
  • geotina
    geotina Member Posts: 2,111 Member
    Crow71 said:

    Ports are great, but when
    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

    Port
    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
    mark440 Member Posts: 63
    Hi P-CHOP!
    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