Yikes - 2 Days Until Chemo

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Comments

  • pcs1453 said:

    Good Luck To You!
    Hi Nana,

    Sounds like your climate is similar to mine in Sacramento. It is cold and foggy. One thing I have discovered is that room temperature water is still too cold. I've been warming my water in the microwave. Funny how the littlest things can make a difference. One other thing I've learned, it's difficult to make a salad with gloves on.

    Good luck tomorrow. Take Care, Paula
    This comment has been removed by the Moderator
  • Mike49
    Mike49 Member Posts: 261
    trouble sleeping from the pre-meds
    I wanted to add since I noticed some discussion about not being able to sleep. I asked my Dr. for something to help me sleep since the Decadron (steroid) they give me before chemo makes me stay up all night sometimes. He gave me Ativan, I take one at bedtime and it allows me a good night sleep. We need our rest, and I don't like to take too much medication but between the side effects, ansomnia, and psychology of having this disease there is plenty to rob our sleep. If you have trouble sleeping don't feel guilty about asking for something to help, a good night sleep and we are strong and ready for the next days fight.

    Take care, and don't just count sheep.

    Mike
  • Mike49 said:

    trouble sleeping from the pre-meds
    I wanted to add since I noticed some discussion about not being able to sleep. I asked my Dr. for something to help me sleep since the Decadron (steroid) they give me before chemo makes me stay up all night sometimes. He gave me Ativan, I take one at bedtime and it allows me a good night sleep. We need our rest, and I don't like to take too much medication but between the side effects, ansomnia, and psychology of having this disease there is plenty to rob our sleep. If you have trouble sleeping don't feel guilty about asking for something to help, a good night sleep and we are strong and ready for the next days fight.

    Take care, and don't just count sheep.

    Mike

    This comment has been removed by the Moderator
  • MoonDragon
    MoonDragon Member Posts: 183
    Buzzard said:

    side effects.....
    First off let me welcome you to a place no one really wants to join. Secondly , there is a wealth of info here and only come here for info. Stay off the other websites for they will only scare you to death. They are way behind in facts and usually are 2-5 years from being updated so stay away from those.
    Oxiliplatin........cold sensitivity, not just minor, major, especially right after infusion. It is like your hand freezing not slowly but immediately when you touch something cold....about 50* is my thresh hold...No cold drinks, it will hurt bad.. You will get use to what you can and can't drink or eat. Being outside in the cold makes my lips start getting numb like I have been to the dentist . It may not effect you as bad but it will be noticeable. Nausea is pretty bad for me also. I tried Compazine, Zofran, Anzemet, and now Emend and the Emend is doing an OK job but Im still nauseous. I have 5 more treatments and Im done and I can't wait to get off this.....I just figure that every other week is going to be a sick one and just do it and move on. You have 6 treatments. That will pass by quickly......Good Luck and God Bless......

    Such a Rebel
    I had to laugh when I read in your comment "no cold drinks". My oncologist told me the same thing. Me being the idiot, rebel or whatever you want to call it had to try it anyway just to see what he was talking about. I think idiot is more appropriate than rebel now that I think about it! As soon as the cold hit my throat it tightened and closed and I gagged and spewed it all back up. Needless to say that was the last time I "touched the hot stove when told not to touch because it's hot". hehehe
  • MoonDragon
    MoonDragon Member Posts: 183
    pcs1453 said:

    One Down
    Boy, you were right about the cold sensitivity. I had been told about it but it was so quick. I have gloves all over the house and it's amazing that everything seems cold. I'm hoping, like you, the sensitivity will lessen after a few days. This afternoon the sun was out and it was pretty warm out, maybe 55 or so. It felt so good to sit in the sun for a few minutes. I also have been experiencing jaw pain. The first bite of anything I eat makes my jaw hurt for just a minutes. Also, I coughed and got the same type of pain around my eyes. I just hope I start sleeping better. I don't know if it was the drugs or what but I was so exhausted when I got home from the hospital yesterday and I was sure I would sleep great. Wrong. Hopefully, tonight will be better. Thanks for your comments!

    Heating Pad
    One thing that really helped me with the cold sensitivity especially during the drip was to wrap a heating pad around my wrist where the needle entered my skin. It was a huge help and alleviated alot of the tingling sensation both during and after. :)
  • MoonDragon
    MoonDragon Member Posts: 183
    taraHK said:

    I'm on that regime
    Hi. I have been on the exact same regime (XELOX).

    As you may already be aware, oxaliplatin has some strange side effects including (for most but not all people): sensitivity to cold (drinking, touching), neuropathy (tingly pain) in fingers toes, "jaw spasm" (sore feeling in jaw on first bite of food - may just last a day or 3).

    Side effects of xeloda seem (to me) to be: mild fatigue, mild nausea, maybe a bit of hair loss and, for some people, hand/foot syndrome (peeling skin or blisters on soles of feet, palms of hand).

    I think it is great that your doc has pts attend a session beforehand. Great idea. I imagine this will ease your nerves some.

    I think one of the most important things is to let your doctor/nurses know of any side effects you are having -- they can ofter suggest things to help....And certainly if you experience anything extreme (extreme diarrhea, for example), you should let them know immediately....

    Many people sail through with pretty minimal side effects -- and I certainly hope you are one of them!

    Tara

    Yes, yes, yes, do report
    Yes, yes, yes, do report your side effects to your doctor right away! I had EXTREME diahrrea with Xeloda and thought it was normal. I was wearing diapers and had a bit of a problem with getting the radiation as I literally couldn't take the diapers off. It was horrible but I thought it was normal. I had no idea that I should have called my doctor. After weeks of this and severe dehydration and getting to the point where I couldn't lift my head or get out of bed, I called him and he stopped the Xeloda right away. Turns out that my body is missing the enzyme that's needed to break down the drug and make it effective. I was getting huge overdoses and it made soup out of my insides. If it doesn't seem normal to you, check it out and question what normal should be! I don't think you have anything to worry about as my doctor said it's rather rare that this happens but do be aware that if you're feeling this way to check it out. Don't mean to be a downer or scare you, most don't have symptoms like this, just want you to be aware and not in the dark like I was. Wishing you a smooth ride!
  • msccolon
    msccolon Member Posts: 1,917 Member

    Such a Rebel
    I had to laugh when I read in your comment "no cold drinks". My oncologist told me the same thing. Me being the idiot, rebel or whatever you want to call it had to try it anyway just to see what he was talking about. I think idiot is more appropriate than rebel now that I think about it! As soon as the cold hit my throat it tightened and closed and I gagged and spewed it all back up. Needless to say that was the last time I "touched the hot stove when told not to touch because it's hot". hehehe

    Me too! Me too!
    I HAD to try a freezie pop! BIG mistake! It took me 2 years after that episode to even be able to LOOK at a freezie pop after that! :)
    mary
  • pcs1453
    pcs1453 Member Posts: 75

    Such a Rebel
    I had to laugh when I read in your comment "no cold drinks". My oncologist told me the same thing. Me being the idiot, rebel or whatever you want to call it had to try it anyway just to see what he was talking about. I think idiot is more appropriate than rebel now that I think about it! As soon as the cold hit my throat it tightened and closed and I gagged and spewed it all back up. Needless to say that was the last time I "touched the hot stove when told not to touch because it's hot". hehehe

    I had to laugh!
    Reading your comment made me smile. I swear, I'm dying for a cold diet coke. Almost two weeks since my first IV with oxy and the sensitivity is a little better. I can drink room temp water and no longer have to heat my water in the microwave. 1/26 is the start of round 2 so I suppose it will start all over again.
  • daydreamer110761
    daydreamer110761 Member Posts: 487 Member
    unknown said:

    This comment has been removed by the Moderator

    I am SO jealous
    Of everyone that lives in Arizona, California, etc. Born and rained in Philly, lived in Florida for 16 years, and then proceeded to move to Minnesota for love! With our temps being 21 BELOW zero last week - it truly felt like hell froze over! Fortunate for me Nick had a remote start put in my truck as a Christmas gift just the week before!

    The side effects of the tingly hands and feet are horrible here, they start immediately when the drip starts for me, and then tend to last until about 5 days after. It never goes completely away, and imagine - I ground meat to make hamburgers, and then stood there staring at it in tears when I realized there was no way I was putting my hands in that cold meat!

    I also got the tight jaw thing (thought it was my imagination), and my eyes bother me as far as tearing up and feeling sort of frozen. I feel like it's melting brain cells and foget what I went into a room for or a word in the middle of a sentence gets left out. The first round sent me right in the bathroom the morning after the IV was removed, and I learned to take immodium the night before and the morning of. Everyone is right about the steroid - I get Decadron in a syringe with the anti-nausea med. I am tired when I get home but no way can I sleep - feel more like cleaning something but don't want to move around much with the pump.

    Good luck - and welcome to the forum - I guess - these guys are great support - they let me spout alot!
  • MoonDragon
    MoonDragon Member Posts: 183

    I am SO jealous
    Of everyone that lives in Arizona, California, etc. Born and rained in Philly, lived in Florida for 16 years, and then proceeded to move to Minnesota for love! With our temps being 21 BELOW zero last week - it truly felt like hell froze over! Fortunate for me Nick had a remote start put in my truck as a Christmas gift just the week before!

    The side effects of the tingly hands and feet are horrible here, they start immediately when the drip starts for me, and then tend to last until about 5 days after. It never goes completely away, and imagine - I ground meat to make hamburgers, and then stood there staring at it in tears when I realized there was no way I was putting my hands in that cold meat!

    I also got the tight jaw thing (thought it was my imagination), and my eyes bother me as far as tearing up and feeling sort of frozen. I feel like it's melting brain cells and foget what I went into a room for or a word in the middle of a sentence gets left out. The first round sent me right in the bathroom the morning after the IV was removed, and I learned to take immodium the night before and the morning of. Everyone is right about the steroid - I get Decadron in a syringe with the anti-nausea med. I am tired when I get home but no way can I sleep - feel more like cleaning something but don't want to move around much with the pump.

    Good luck - and welcome to the forum - I guess - these guys are great support - they let me spout alot!

    Heating Pad
    One of the things that REALLY helped me a lot with the tingly and cold sensativity was to take a heating pad with me to my chemo appointments. I wrapped the warm pad around my hand (pre port) and not only did it lessen the discomfort of the drug going into my arm but the affects after seemed to be lessened as well. They didn't completely abate but it made a huge difference.

    :) Jorie
  • maglets
    maglets Member Posts: 2,576 Member

    Heating Pad
    One of the things that REALLY helped me a lot with the tingly and cold sensativity was to take a heating pad with me to my chemo appointments. I wrapped the warm pad around my hand (pre port) and not only did it lessen the discomfort of the drug going into my arm but the affects after seemed to be lessened as well. They didn't completely abate but it made a huge difference.

    :) Jorie

    so glad
    I am so happy to see this thread move forward. I almost feel jealous that my oxy has been postponed till after colonoscopy...there are so many good tips and experiences happening right now. Jorie I love the heating pad idea. Our temperatures are dipping to -20 also and in the morning our house is about 49 degrees. Guess I'll get those gloves ready.

    All very best wishes and hugs to all the chemo-ites
    Hopefully joining you soon
    Mags
  • maglets
    maglets Member Posts: 2,576 Member
    maglets said:

    so glad
    I am so happy to see this thread move forward. I almost feel jealous that my oxy has been postponed till after colonoscopy...there are so many good tips and experiences happening right now. Jorie I love the heating pad idea. Our temperatures are dipping to -20 also and in the morning our house is about 49 degrees. Guess I'll get those gloves ready.

    All very best wishes and hugs to all the chemo-ites
    Hopefully joining you soon
    Mags

    xeloda
    Paula I too kept a record of side effects. I was on xeloda for 8 months as the only chemo so I didn't have to guess which chemo was giving the side effect. I found I had abdominal soreness and all the scar tissue on my belly....from numerous surgeries....would really ache.

    I had trouble sleeping just from the xeloda alone.

    I did try to get out for a walk every day and always felt less nausea.
    Just some thought.


    All best wishes and hugs to you
    Mag
  • VickiCO
    VickiCO Member Posts: 917

    Heating Pad
    One of the things that REALLY helped me a lot with the tingly and cold sensativity was to take a heating pad with me to my chemo appointments. I wrapped the warm pad around my hand (pre port) and not only did it lessen the discomfort of the drug going into my arm but the affects after seemed to be lessened as well. They didn't completely abate but it made a huge difference.

    :) Jorie

    heating pads
    At my cancer center they offer heat pads to everyone who has the IV in the hand/arm. Most used them. These are the ones you heat in a microwave, but they stay hot a long time. It helps I am told...I have a port, so I didn't have the IV.

    Vicki
  • EDGAR43
    EDGAR43 Member Posts: 5

    Heating Pad
    One thing that really helped me with the cold sensitivity especially during the drip was to wrap a heating pad around my wrist where the needle entered my skin. It was a huge help and alleviated alot of the tingling sensation both during and after. :)

    PAIN
    Hi, I have a question for you. I just started on my OXY and Xeloda but i don't have a power port. I had my iv done 3 days ago and still hurts like crazy. Do you have a port and would you recomend one to be put in. I still have 7 more cycles to do and i am thinking if should put on in or not. Thanks in advance
    Edgar43


    COLON CANCER STAGE 2
    NEWLY DX IN NOV 2007
  • jsabol
    jsabol Member Posts: 1,145 Member
    EDGAR43 said:

    PAIN
    Hi, I have a question for you. I just started on my OXY and Xeloda but i don't have a power port. I had my iv done 3 days ago and still hurts like crazy. Do you have a port and would you recomend one to be put in. I still have 7 more cycles to do and i am thinking if should put on in or not. Thanks in advance
    Edgar43


    COLON CANCER STAGE 2
    NEWLY DX IN NOV 2007

    PORT
    Hi Edgar, I had to chime in on this one; if you have any inclination to get a port, DO IT! I went through nearly one round of 5FU and Leuco back over 4 yrs ago, and my veins were screaming after each infusion. What a difference the port made; not sure why my onc didn't recommend it (I had "great" veins?!), but the onc nurses were pretty clearly in favor. Another benefit was that the infusion went a bit faster, too....less time in the "chemo pit"!
    Best of luck,
    Judy
  • jsabol
    jsabol Member Posts: 1,145 Member
    Stay strong!
    While I am now only an occasional visitor to this board, your story matches mine very closely from 5 years ago. So many of your questions strike a chord for me!
    I was diagnosed with 1 cancerous polyp on my baseline colonscopy in Nov '03, CT scan showed nothing, CEA very low, then, BAM! one positive node. I didn't see any of this coming and could not believe the news. Didn't help that I had recently lost my dad to metastatic colon cancer. My surgeon framed it very positively, that we were going in to nuke any lurking cells, and I'd be fine.
    I shared your anxiety about chemo, while trying to stay positive for hubby and high school age kids. At the time, Oxali was just coming out of trials (the dark ages!), so my treatment was only 5FU (love that FU thing!) and leuco. I switched oncs when I felt I would slug mine each time he referred to it as "chemo lite"; I was sooooo fatigued after 2 months, I just longed to be horizontal and watch the ceilng!
    Fast forward 5 years; I remain No Evidence of Disease since surgery; finished chemo in July of 04, and am relieved and grateful to pass every milestone. There were some bumps along the way with side effects, but you have gotten lots of great advice here. I LIVED on these boards at the time, and the support was VITAL. I couldn't thank my buddies from that time enough.
    I have a colonoscopy scheduled in 2 weeks; every test still gives me the jitters, but I know that life goes on and we have to all play the cards we are dealt. I am grateful to see this day, and plan on many more!
    Stay strong and focused; you will get through this, one day, one treatment at a time.
    Judy (who looks back with gratitude and relief to 5 years ago!)
  • pcs1453
    pcs1453 Member Posts: 75
    Port or Not
    Hi Edgar, For my first infusion, I knew the port was going to be so much better then dealing with an IV in my arm every three weeks. It was my understanding that oxy was really hard on the veins, thus, the reason for the port. I have pretty much healed from the procedure of having the port put in (except for the scar) and I hardly notice it is there. I go in Monday for my second infusion and it will be so quick and easy to get hooked up. I would recommend the port if you can. Best of luck. Paula
  • pcs1453
    pcs1453 Member Posts: 75
    jsabol said:

    Stay strong!
    While I am now only an occasional visitor to this board, your story matches mine very closely from 5 years ago. So many of your questions strike a chord for me!
    I was diagnosed with 1 cancerous polyp on my baseline colonscopy in Nov '03, CT scan showed nothing, CEA very low, then, BAM! one positive node. I didn't see any of this coming and could not believe the news. Didn't help that I had recently lost my dad to metastatic colon cancer. My surgeon framed it very positively, that we were going in to nuke any lurking cells, and I'd be fine.
    I shared your anxiety about chemo, while trying to stay positive for hubby and high school age kids. At the time, Oxali was just coming out of trials (the dark ages!), so my treatment was only 5FU (love that FU thing!) and leuco. I switched oncs when I felt I would slug mine each time he referred to it as "chemo lite"; I was sooooo fatigued after 2 months, I just longed to be horizontal and watch the ceilng!
    Fast forward 5 years; I remain No Evidence of Disease since surgery; finished chemo in July of 04, and am relieved and grateful to pass every milestone. There were some bumps along the way with side effects, but you have gotten lots of great advice here. I LIVED on these boards at the time, and the support was VITAL. I couldn't thank my buddies from that time enough.
    I have a colonoscopy scheduled in 2 weeks; every test still gives me the jitters, but I know that life goes on and we have to all play the cards we are dealt. I am grateful to see this day, and plan on many more!
    Stay strong and focused; you will get through this, one day, one treatment at a time.
    Judy (who looks back with gratitude and relief to 5 years ago!)

    Staying Strong
    Hi Judy, I am so happy for you that you have had no further problems. It is so encourging to hear good news. If I could fast forward 5 years, I will be saying the same thing (with a little luck). I think with every year that passes progess is made with the chemo drugs. The oxy does have it's side effects but there are more drugs given to help combat them. I have only have one round but it wasn't too bad. I'm hoping that will continue to be the case. The oral drugs, Xeloda, is changed in the body to 5-FU. Every dose I take, twice a day, I also take 1 zofran to prevent nausea. Again, so far not too many problems. Time will tell if the side effects will worsen but I am keeping a good attitude and am trying to stay active. Thanks for sharing your story. Paula
  • pcs1453
    pcs1453 Member Posts: 75
    jsabol said:

    Stay strong!
    While I am now only an occasional visitor to this board, your story matches mine very closely from 5 years ago. So many of your questions strike a chord for me!
    I was diagnosed with 1 cancerous polyp on my baseline colonscopy in Nov '03, CT scan showed nothing, CEA very low, then, BAM! one positive node. I didn't see any of this coming and could not believe the news. Didn't help that I had recently lost my dad to metastatic colon cancer. My surgeon framed it very positively, that we were going in to nuke any lurking cells, and I'd be fine.
    I shared your anxiety about chemo, while trying to stay positive for hubby and high school age kids. At the time, Oxali was just coming out of trials (the dark ages!), so my treatment was only 5FU (love that FU thing!) and leuco. I switched oncs when I felt I would slug mine each time he referred to it as "chemo lite"; I was sooooo fatigued after 2 months, I just longed to be horizontal and watch the ceilng!
    Fast forward 5 years; I remain No Evidence of Disease since surgery; finished chemo in July of 04, and am relieved and grateful to pass every milestone. There were some bumps along the way with side effects, but you have gotten lots of great advice here. I LIVED on these boards at the time, and the support was VITAL. I couldn't thank my buddies from that time enough.
    I have a colonoscopy scheduled in 2 weeks; every test still gives me the jitters, but I know that life goes on and we have to all play the cards we are dealt. I am grateful to see this day, and plan on many more!
    Stay strong and focused; you will get through this, one day, one treatment at a time.
    Judy (who looks back with gratitude and relief to 5 years ago!)

    Staying Strong
    Hi Judy, I am so happy for you that you have had no further problems. It is so encourging to hear good news. If I could fast forward 5 years, I will be saying the same thing (with a little luck). I think with every year that passes progess is made with the chemo drugs. The oxy does have it's side effects but there are more drugs given to help combat them. I have only have one round but it wasn't too bad. I'm hoping that will continue to be the case. The oral drugs, Xeloda, is changed in the body to 5-FU. Every dose I take, twice a day, I also take 1 zofran to prevent nausea. Again, so far not too many problems. Time will tell if the side effects will worsen but I am keeping a good attitude and am trying to stay active. Thanks for sharing your story. Paula