well #5 kicked my you know what

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johnnybegood
johnnybegood Member Posts: 1,117 Member
edited March 2014 in Colorectal Cancer #1
man i dont think i have felt this bad yet,#2 was bad with vomating but i have gotten that under control.tuesday before i left the onc office my lips were tingling and i felt bad when i walked out of there.this morning i got up at 8:30 my lips were swelled alomg with my throat,its times like this when i just want to say the hell with it .while i was in the onc office i had to get a shot of procrit to make the red ones go up and today when i got the pump off i had to get a shot of neulasta cause my white ones were down also .what a mess.hope you all out there are holding onto my rope because i swear sometimes i feel im not going to make it to 12 Godbless everyone on this board or i wouldn't even made it this far.......johnnybegood

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  • msccolon
    msccolon Member Posts: 1,917 Member
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    so sorry you had such a hard time!
    but definitely mention the lip tingling and swelling, could be a bad allergic reaction that might get worse! I sure hope the rest of the week goes better for you! Take care and stay strong!
    mary
  • PhillieG
    PhillieG Member Posts: 4,866 Member
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    Hang in there
    Johnny, hang in there buddy. You're just about 1/2 way there. Try to focus on how much better you will be when you are done with this. It may not seem like it's going fast but once you've gone through it then it somehow doesn't seem as bad as you thought.
    Just keep up the great work.
    -phil
  • Shayenne
    Shayenne Member Posts: 2,342
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    PhillieG said:

    Hang in there
    Johnny, hang in there buddy. You're just about 1/2 way there. Try to focus on how much better you will be when you are done with this. It may not seem like it's going fast but once you've gone through it then it somehow doesn't seem as bad as you thought.
    Just keep up the great work.
    -phil

    Keep it up!
    I start #4 next week, first one since my surgery 5 weeks ago, I know you can keep on fighting it...just stay strong, and try keeping your mind off the bad, and focus on the good that will come out of it, pain is gain, isn't that how the saying goes? I'm right behind you, and ready to keep on fighting as well, even though I don't feel like I'm going to make it either, this week, I've felt so much more tired and nauseatious with no appetite, and I haven't even had chemo since the surgery, but tonight, I seem to be feeling better.. the weakness is a scary feeling, I just want to gain weight, I'm losing too much now, since I'm not eating much, to be strong for the chemo treatments.

    Hang in there, you'll do great, sorry to hear about that lip swelling reaction, that's actually a symptom I've never heard of! Feel better soon :)

    Hugsss!
    ~Donna
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    You can do it!
    You really can... look at you, you've already started #5! I can't remember if you are on FOLFOX ... the 5FU with the Oxipilatin? The tingling of the lips before you left the office and then the throat sounds very much like an Oxy side affect/reaction. I remember them well!

    I think we all are so focused on feeling "normal" while we go through these treatments and trying to accomplish all the normal every day things to prove that we aren't sick, or aren't being affected by what we are going through. Well, guess what my warrior friend? What you are going through no one else who is "normal" and not having to deal with this has any idea the toll it takes on you. So the week you are on chemo, just allow yourself to get through it, whatever that takes. It might mean just laying around the house, not lifting a finger... and if that's the case, then so be it. It might mean taking a good book and a comfy outdoor chair and go sit close to your horse and just read. Spend all the time you want reading, drawing, or just contemplating on the beauty of having your own horse close by. If it's still a little too chilly to be outside and that affects the tingling, then take that same good book and get lost in it inside. Remember... you just have to get through one day at a time. Don't think of "twelve" treatments... just think of today. And then tomorrow. Before you know it, it will be your "rest" week... and you will have gotten through another treatment.

    I know, I know... easier said than done, especially when you feel horrid. But sometimes we feel even worse when we think of what we still have to face, rather than "Can I make it through until tonight?" and just take it 12 or 24 hours at a time.

    But do tell your onc about the tingling of the lips and the swelling of the throat. This sounds like an oxy reaction but it also could be an allergic reaction and your onc needs to know about these side affects.

    Huggggggs,

    Cheryl
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    Sorry
    Since I didn't have to do chemo, I'm not going to say anything except that I'm very sorry you're having such a hard time with this one. Hope things get better soon.

    *hugs*
    Gail
  • kmygil
    kmygil Member Posts: 876 Member
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    Holding on....
    We are all holding on to your rope; just don't you let go! I am so sorry chemo is kicking your heinie. I feel for you so much. BUT!, you are at #5 and have that many fewer to go. I think we all understand how you get to the point where you're feeling like Scottie, you know, "I'm giving it all I've got, Captain, but she just won't take anymore!" But you can take more--just keep on top of those blood counts and don't forget your hydration & nutrition. I realize it is miserable to try to eat when you are nauseated and your throat feels like glass shards are lining it. Do your best and realize that during all of this, you are kicking the cancer's heinie!

    Hugs and prayers,
    Kirsten
  • maglets
    maglets Member Posts: 2,576 Member
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    You can do it!
    You really can... look at you, you've already started #5! I can't remember if you are on FOLFOX ... the 5FU with the Oxipilatin? The tingling of the lips before you left the office and then the throat sounds very much like an Oxy side affect/reaction. I remember them well!

    I think we all are so focused on feeling "normal" while we go through these treatments and trying to accomplish all the normal every day things to prove that we aren't sick, or aren't being affected by what we are going through. Well, guess what my warrior friend? What you are going through no one else who is "normal" and not having to deal with this has any idea the toll it takes on you. So the week you are on chemo, just allow yourself to get through it, whatever that takes. It might mean just laying around the house, not lifting a finger... and if that's the case, then so be it. It might mean taking a good book and a comfy outdoor chair and go sit close to your horse and just read. Spend all the time you want reading, drawing, or just contemplating on the beauty of having your own horse close by. If it's still a little too chilly to be outside and that affects the tingling, then take that same good book and get lost in it inside. Remember... you just have to get through one day at a time. Don't think of "twelve" treatments... just think of today. And then tomorrow. Before you know it, it will be your "rest" week... and you will have gotten through another treatment.

    I know, I know... easier said than done, especially when you feel horrid. But sometimes we feel even worse when we think of what we still have to face, rather than "Can I make it through until tonight?" and just take it 12 or 24 hours at a time.

    But do tell your onc about the tingling of the lips and the swelling of the throat. This sounds like an oxy reaction but it also could be an allergic reaction and your onc needs to know about these side affects.

    Huggggggs,

    Cheryl

    you are so wise
    cheryl you amaze me. You are so wise. Johnny I have had a sh-- kicking with #5 also so I feel for you. The thing is I was so bad and down this week I couldn't do anything so i had to do what Cheryl suggests and I just got on the ok let's get through till noon or let's get till supper.....never mind tomorrow or the next round.
    The oxy kicks me for the first 7 days and then the xeloda kicks in for 14 swimmingly nausea filled days. I am trying going back to zero and just just taking plain old gravol....I think it helps and I am making tea with raw ginger and starting to study some reflexology pressure points to help nausea. I would really appreciate any tips on nausea...the emend sure didn't do it for me.

    So Johnny the weekend is here. Can you kick back and find any little thing to enjoy. Really sweetie try not to go too far forward. Hang in, baby steps ....we are here for you

    much love
    mags
  • VickiCO
    VickiCO Member Posts: 917
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    Hang on Sweetie!
    I had a rough time with #2 a couple of weeks ago, but it sounds like you are much worse. Don't give up! We are holding on to that rope and wrapping it around you. If your swollen lips aren't due an allergic reaction, but chemo, try sucking on cantaloupe. The nurses told me about it. I would have it very cold, almost frozen. It has healing properties, and is a natural anti-nausea food.

    We're here for you. Keep fighting! Vicki
  • maglets
    maglets Member Posts: 2,576 Member
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    VickiCO said:

    Hang on Sweetie!
    I had a rough time with #2 a couple of weeks ago, but it sounds like you are much worse. Don't give up! We are holding on to that rope and wrapping it around you. If your swollen lips aren't due an allergic reaction, but chemo, try sucking on cantaloupe. The nurses told me about it. I would have it very cold, almost frozen. It has healing properties, and is a natural anti-nausea food.

    We're here for you. Keep fighting! Vicki

    canta loopie
    Vicki i had forgotten that tip....I am going to go out and see if there is a cantaloupe in this town.

    mags
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
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    VickiCO said:

    Hang on Sweetie!
    I had a rough time with #2 a couple of weeks ago, but it sounds like you are much worse. Don't give up! We are holding on to that rope and wrapping it around you. If your swollen lips aren't due an allergic reaction, but chemo, try sucking on cantaloupe. The nurses told me about it. I would have it very cold, almost frozen. It has healing properties, and is a natural anti-nausea food.

    We're here for you. Keep fighting! Vicki

    thanks so much
    for everyones reply.yes the nurse did tell me the tingling lips was due to the good ole oxy.she said the more you get the quicker the side effects will appear.and donna i have lost 4 lbs in two week due to pain in my abdomen that may be why im feeling these side effects more.i got me some boost and things like that to help.like i said if it wasnt for my cyber friends i couldnt make it.and cheryl i love your pep talks keep them comming Godbless everyone....johnnybegood
  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
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    thanks so much
    for everyones reply.yes the nurse did tell me the tingling lips was due to the good ole oxy.she said the more you get the quicker the side effects will appear.and donna i have lost 4 lbs in two week due to pain in my abdomen that may be why im feeling these side effects more.i got me some boost and things like that to help.like i said if it wasnt for my cyber friends i couldnt make it.and cheryl i love your pep talks keep them comming Godbless everyone....johnnybegood

    Hang in there
    I'm thinking how much angel hated chemo because of the side effects and he had them all but he went to every session and he was my hero, as all of you going threw cancer treatment are.

    michelle
  • daydreamer110761
    daydreamer110761 Member Posts: 487 Member
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    Hang in there
    I'm thinking how much angel hated chemo because of the side effects and he had them all but he went to every session and he was my hero, as all of you going threw cancer treatment are.

    michelle

    I have that also
    You just hang in there - it goes away, eventually. I think it was about #4 or 5 that the lips started, it was still cold outside and my face would do contortionistic like things and there was nothing I could do to stop it! I am going to start #12 next week, and I'll tell you, that as it goes on the lips and throat start right away now, and it sticks with me even now, although not as bad as the first few days. I can, however eat ice cream and drink cold things as long as it doesn't touch my lips! I can't wait to see how long it takes to completely disappear after next week!
  • lisa42
    lisa42 Member Posts: 3,625 Member
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    bummer- but remember what it's for!
    Hi,

    What a major bummer chemo is!! It really sucks, doesn't it?! Just remember though, what it's for and don't let it get the best of you. It seems like it takes forever as you're going through it, but you'll be past it all sooner than you think. It may seem now like it's just not worth it, but if it can save your life and/or prevent any cancer from coming back, then it's worth it!
    **Definitely call your doctor/nurses today to report your reaction with the tingling lips and swelling throat, if you haven't already done so. That was an allergic reaction to the oxaliplatin. Before getting the oxi again next time, the doctor/nurses need to be prepared to give you both steroids and benadryl via the iv (that's what they gave me, anyhow). Then, they may do what I had done after my allergic reaction- extend the infusion time of the oxi out over a longer time period. I guess if you get the steroids and benadryl ahead of time and give the oxi more slowly, the likelihood of you being able to continue getting it without allergic reactions is better. I had the allergic reaction my first time of getting it. The next time and all times after that, they did what I said above and I was able to tolerate it alright. On my very last time of getting the Folfox, even though I had the steroids/benadryl and they extended the infusion time out longer, I had another allergic reaction. I was glad it was my last time, because I was told that I wouldn't have been able to get it anymore after that because the reaction could have been very serious and life threatening if I did.

    I've done Folfiri since then and have not had any problems with allergic reactions- oxaliplatin is the only one I've heard about giving people problems with that.

    Good luck to you- hang in there-

    God bless,
    Lisa
  • kimby
    kimby Member Posts: 797
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    maglets said:

    you are so wise
    cheryl you amaze me. You are so wise. Johnny I have had a sh-- kicking with #5 also so I feel for you. The thing is I was so bad and down this week I couldn't do anything so i had to do what Cheryl suggests and I just got on the ok let's get through till noon or let's get till supper.....never mind tomorrow or the next round.
    The oxy kicks me for the first 7 days and then the xeloda kicks in for 14 swimmingly nausea filled days. I am trying going back to zero and just just taking plain old gravol....I think it helps and I am making tea with raw ginger and starting to study some reflexology pressure points to help nausea. I would really appreciate any tips on nausea...the emend sure didn't do it for me.

    So Johnny the weekend is here. Can you kick back and find any little thing to enjoy. Really sweetie try not to go too far forward. Hang in, baby steps ....we are here for you

    much love
    mags

    Nausea
    I'm still navigating the nausea gauntlet myself. It seems that each new chemo cocktail brings new challenges. For folfox I needed only room temperature as hot food/drink upset my tummy and I couldn't do cold. Since then, cold seems to work best. I bought a Hawaiian ice shaving machine and make snow cones, sherbet and frozen ices help, watermelon has been a constant friend.

    The best med I found (for me - remember how different we all are!) is the Sancuso patch. I put one on my arm every Sunday night and get 24/7 nausea relief. It has worked very well.

    HTH,

    Kimby
  • maglets
    maglets Member Posts: 2,576 Member
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    kimby said:

    Nausea
    I'm still navigating the nausea gauntlet myself. It seems that each new chemo cocktail brings new challenges. For folfox I needed only room temperature as hot food/drink upset my tummy and I couldn't do cold. Since then, cold seems to work best. I bought a Hawaiian ice shaving machine and make snow cones, sherbet and frozen ices help, watermelon has been a constant friend.

    The best med I found (for me - remember how different we all are!) is the Sancuso patch. I put one on my arm every Sunday night and get 24/7 nausea relief. It has worked very well.

    HTH,

    Kimby

    patch
    ran all over town Kimby to all the pharmacies here......total blank. No one in my town has heard of the Sancuso patch. Thanks ayway hon, I'll keep looking into it.

    meanwhile munchie munchie on the ginger. :):):)

    love and thanks,

    mags
  • kimby
    kimby Member Posts: 797
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    maglets said:

    patch
    ran all over town Kimby to all the pharmacies here......total blank. No one in my town has heard of the Sancuso patch. Thanks ayway hon, I'll keep looking into it.

    meanwhile munchie munchie on the ginger. :):):)

    love and thanks,

    mags

    Oopss...
    Should have mentioned that it is a prescription! I got it when we were searching for something my insurance liked, too. Since they seem to prefer the newer stuff I tried it. They don't want to pay for Zofran but don't mind this new patch...go figure.

    Kimby
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
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    lisa42 said:

    bummer- but remember what it's for!
    Hi,

    What a major bummer chemo is!! It really sucks, doesn't it?! Just remember though, what it's for and don't let it get the best of you. It seems like it takes forever as you're going through it, but you'll be past it all sooner than you think. It may seem now like it's just not worth it, but if it can save your life and/or prevent any cancer from coming back, then it's worth it!
    **Definitely call your doctor/nurses today to report your reaction with the tingling lips and swelling throat, if you haven't already done so. That was an allergic reaction to the oxaliplatin. Before getting the oxi again next time, the doctor/nurses need to be prepared to give you both steroids and benadryl via the iv (that's what they gave me, anyhow). Then, they may do what I had done after my allergic reaction- extend the infusion time of the oxi out over a longer time period. I guess if you get the steroids and benadryl ahead of time and give the oxi more slowly, the likelihood of you being able to continue getting it without allergic reactions is better. I had the allergic reaction my first time of getting it. The next time and all times after that, they did what I said above and I was able to tolerate it alright. On my very last time of getting the Folfox, even though I had the steroids/benadryl and they extended the infusion time out longer, I had another allergic reaction. I was glad it was my last time, because I was told that I wouldn't have been able to get it anymore after that because the reaction could have been very serious and life threatening if I did.

    I've done Folfiri since then and have not had any problems with allergic reactions- oxaliplatin is the only one I've heard about giving people problems with that.

    Good luck to you- hang in there-

    God bless,
    Lisa

    thanks lisa
    i will keep this in mind the next time i go to the onc.i do know the day i got unhooked from 5fu is when my throat was the worst which was on thursday.today is saturday and it seems to be better.if i keep losing weight they may have to lower the dose.i am down to 102 now.this oxy makes my abdomin hurt so bad i cant eat a whole lot.all i want to do is sleep and drink fliuds.thank you all talk to ya soon Godbless.....johnnybegood
  • Julie 44
    Julie 44 Member Posts: 476 Member
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    thanks lisa
    i will keep this in mind the next time i go to the onc.i do know the day i got unhooked from 5fu is when my throat was the worst which was on thursday.today is saturday and it seems to be better.if i keep losing weight they may have to lower the dose.i am down to 102 now.this oxy makes my abdomin hurt so bad i cant eat a whole lot.all i want to do is sleep and drink fliuds.thank you all talk to ya soon Godbless.....johnnybegood

    Hang in there
    Johnny,
    Please hang in there..I know it feels like it is never going to end but it really does...The side effects really suck but you just have to take it as it comes to you...I have had a teriible time too alot just when you start to feel better you have to go back for another treatment...and on and on but what really helped me is looking forward to things to come...I planned a NED (no evidence of disease) BBQ, also a summer vaction to the Jersey shore and looking very forward to my daughters graduation from high school..(not really boo whooo whooo) but you really need to look for something to look forward to and keep your sight on that...It does help...Good luck and keep posting because we are all here for you..Good luck, keep looking up.. Julie
  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    Julie 44 said:

    Hang in there
    Johnny,
    Please hang in there..I know it feels like it is never going to end but it really does...The side effects really suck but you just have to take it as it comes to you...I have had a teriible time too alot just when you start to feel better you have to go back for another treatment...and on and on but what really helped me is looking forward to things to come...I planned a NED (no evidence of disease) BBQ, also a summer vaction to the Jersey shore and looking very forward to my daughters graduation from high school..(not really boo whooo whooo) but you really need to look for something to look forward to and keep your sight on that...It does help...Good luck and keep posting because we are all here for you..Good luck, keep looking up.. Julie

    JBG......
    You better get busy and start eatin'...can't have any skinny kids here.....I always felt like crap after chemo but just as soon as I felt like eating I ate everything in sight cause I knew that the next Monday(chemo day) that my appetite would be gone. I gained 25# through 6 months of chemo (I had lost 28# through Radiation and chemo.....) Pig out when you can and don't let there be any shame in your game while you do it...Its called survival and whatever it takes is what we'll do to attain it...Hang in there Girl, we love ya.......
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
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    Buzzard said:

    JBG......
    You better get busy and start eatin'...can't have any skinny kids here.....I always felt like crap after chemo but just as soon as I felt like eating I ate everything in sight cause I knew that the next Monday(chemo day) that my appetite would be gone. I gained 25# through 6 months of chemo (I had lost 28# through Radiation and chemo.....) Pig out when you can and don't let there be any shame in your game while you do it...Its called survival and whatever it takes is what we'll do to attain it...Hang in there Girl, we love ya.......

    oh buzzard
    im so glad you are back.im glad that you are doing well,we all need our space sometimes but i new someday you would come back.thanks for the encouragement,Godbless johnnybegood