Yikes - 2 Days Until Chemo

pcs1453
pcs1453 Member Posts: 75
edited March 2014 in Colorectal Cancer #1
In October 2008, a colonoscopy found and removed one polyp. A week later I got the call that it had gone bad, cancer, oh no. In November I had a sigmoid colectomy to remove the section of colon. All signs were that that would be the end of it but 'no' tiny amounts of cancer were found in two lymph nodes. Great! Chemo to worry about. December 30 I had a Power Port inserted and I am scheduled to start treatment on Monday, January 5th. My doctor's drugs of choice are Oxaliplatin (IV) on day one and Xeloda (orally) days one through fourteen. I get one week off drugs before starting again. Six rounds. I am most apprehensive about what side effects I will experience. My hospital/doctor has cancer patients attend a chemo class before starting therapy and the RN leading the class provided good information and tried to ease our nerves. (Is that possible?) I guess I will find out soon enough. Hope all of you out there have a Healty and Happy New Year. Wish me luck.
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Comments

  • Buzzard
    Buzzard Member Posts: 3,043 Member
    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......
  • polarprincess
    polarprincess Member Posts: 202
    welcome
    welcome here... i like you also had a malignant polyp although had 1 lymph node positive. Mine was close to rectal so i had radiation and they recommended 4-6 months of chemo. I am doing the 6 months. You are fotunate to only have to do 6 rounds. That would be awesome. I am assuming you are stage IIIa? (polyp was T1 or T2?) Everyone has different side effects from the chemo, but our regimen is definitely easier than some out there..I have never tried Xeloda, but not being tied to the pump will be nice for you. Good luck
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Welcome to the gang!
    Hi... and welcome! It's not like anyone wants to be hunting for a "support" forum for something like cancer, but when you do need one, well consider yourself lucky to have found the best one around :)

    Everyone reacts differently to the various chemo drugs and even if you are on the exact same kind and dosage as someone else, you will find that your reactions differ from theirs. I think that's why people get so scared when they hear the words "chemo" or "chemotherapy". Since everyone does react differently, the drug companies have to list every possible side affect, known to mankind... basically to cover their butt.

    In reality, the reactions are usually never as bad as your imagination imagines they will be and there may be 30 possible side affects listed and you end up with only one or two of them... and mild ones at that. Unfortunately, there are those who get hit bad with some of them, but that is not the norm.

    I had the Oxaliplatin which is a standard chemo used, usually in combination with another one (in your case, the oral Xeloda). I was on Oxaliplatin combined with 5-FU for 8 months. Well, I only managed 6 1/2 months of the Oxaliplatin because the sensitivity to cold was just too much for me... and this was in the summer! I also got some pretty severe neuropathy (numbing/nerve damage) in my feet, which seems to have gotten worse since I've been off the chemo for a year. Like I say, your mileage will vary depending on your own system.

    But you will do just fine with 6 rounds! It took me at least 10 rounds before I started getting any kind of neuropathy. As for the sensitivity to cold... it will happen for sure when you are getting the IV infusion of Oxaliplatin and will probably last for 2-3 days where you want to be real careful about anything cold. I'm not sure where you live but if your winters are colder than 60F, you are going to want to be really bundled up to go outside. Just breathing cool air can affect your throat, of all things! But don't panic if you get this sensitivity to cold. It will pass and after a couple of days, you can go back to eating/drinking/touching cold things again :) And I would bet after 6 rounds, that won't be enough to do any kind of permanent nerve damage in your hands or feet.

    Now that you have found us... do keep coming back! I'm sure you will have more questions as time goes on... and here is the place to get the best answers because people here have been through what you are asking about :)

    Huggggs,

    Cheryl
  • maglets
    maglets Member Posts: 2,576
    best of luck
    I want to wish you the very very best ....this forum really does seem to have a wealth of people with so much love and experience. I will be starting the exact same routine as you in 2 weeks and I too have the worst nerves about it......and I have done chemo before....twice before. I think it is perfectly normal to feel unsure about the whole thing and I always think it's easier once you are actually into it rather than just worrying about it.

    I hope you'll stay in touch
    You are going to do just fine.

    Big Hugs
    Mags
  • taraHK
    taraHK Member Posts: 1,952
    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
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    welcome
    Hi. Welcome to our group! I think you'll find it very helpful and comforting. I'm sorry about this ugly turn of events in your life, but I do hope and pray you won't have too bad a time of it. Keep us posted as you feel well enough.

    *hugs*
    Gail
  • polarprincess
    polarprincess Member Posts: 202
    chemo
    I have been unlucky in that the side effects from Oxaliplatin for me last the whole 2 weeks not just a couple days like others have mentioned, and it makes me crazy...but when i feel i can't take it anymore i read Lance Armstrong's book. Our regimen compared to the hell he had to go through is what makes me able to handle it.
  • pcs1453
    pcs1453 Member Posts: 75
    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......

    Warm Welcome
    Thanks so much for your reply and comments. You know, I am trying to stay away from the other forums and internet sites. You are right, they will sacre me to death. I have been told about the cold sensitivity. My RN suggested keeping gloves tied to the refer so I don't forget and reach in. The cold drinks are going to be hard to get used to but I will, quickly. I also have been given Compazine and Zofran, hopefully, they will work for me. From the comments I have received, it sounds like the coldness is only really bad for the first couple days. The Xeloda will have a new set of possibilities. I'm glad to hear you are down to 5 more treatments. Hope all goes well. Stay in touch.
  • pcs1453
    pcs1453 Member Posts: 75

    chemo
    I have been unlucky in that the side effects from Oxaliplatin for me last the whole 2 weeks not just a couple days like others have mentioned, and it makes me crazy...but when i feel i can't take it anymore i read Lance Armstrong's book. Our regimen compared to the hell he had to go through is what makes me able to handle it.

    Thanks polarprincess
    Wow, so many different things can happen and I know everyone agrees no two react exactly the same. I guess in a way I am lucky that I am not on a pump but who knows if the other options are any better. I'll let you know. I should keep Lance's book in mind. He has been through a lot and gone on to acheive so much. In answer to your question, yes, I am stage 3. Not sure about the T question. I'd have to go back and check my paperwork. Being a polorprincess makes me think you are from the far north. How in the heck do you stay warm. Here in Sacramento, CA it is pretty cold right now so it sounds like I am going to be staying in a lot. Should I get a WII to give me some exercise? I'll check back with you. Take Care and thanks for your reply.
  • Mike49
    Mike49 Member Posts: 261
    pcs1453 said:

    Thanks polarprincess
    Wow, so many different things can happen and I know everyone agrees no two react exactly the same. I guess in a way I am lucky that I am not on a pump but who knows if the other options are any better. I'll let you know. I should keep Lance's book in mind. He has been through a lot and gone on to acheive so much. In answer to your question, yes, I am stage 3. Not sure about the T question. I'd have to go back and check my paperwork. Being a polorprincess makes me think you are from the far north. How in the heck do you stay warm. Here in Sacramento, CA it is pretty cold right now so it sounds like I am going to be staying in a lot. Should I get a WII to give me some exercise? I'll check back with you. Take Care and thanks for your reply.

    Live your life and think long term
    You've already received alot of advice and I'll only add one thing, think long term, we can beat this thing, live your life along the way. There will be days that you don't feel good, sure, but don't forget to still do things and live your life, it will help you enormously with the psychology of this disease. I took my two sons to the golf course yesterday, here in Arizona its in the 70s and although I got a little tired but I needed to do something normal, our lives are bigger than just chemo and tests. Good luck, your apprehension of starting is normal, I remember the first infusion, in my mind I thought I'd feel awful immediately, it was better than I thought it would be.

    Good luck.

    Mike
  • pcs1453
    pcs1453 Member Posts: 75

    Welcome to the gang!
    Hi... and welcome! It's not like anyone wants to be hunting for a "support" forum for something like cancer, but when you do need one, well consider yourself lucky to have found the best one around :)

    Everyone reacts differently to the various chemo drugs and even if you are on the exact same kind and dosage as someone else, you will find that your reactions differ from theirs. I think that's why people get so scared when they hear the words "chemo" or "chemotherapy". Since everyone does react differently, the drug companies have to list every possible side affect, known to mankind... basically to cover their butt.

    In reality, the reactions are usually never as bad as your imagination imagines they will be and there may be 30 possible side affects listed and you end up with only one or two of them... and mild ones at that. Unfortunately, there are those who get hit bad with some of them, but that is not the norm.

    I had the Oxaliplatin which is a standard chemo used, usually in combination with another one (in your case, the oral Xeloda). I was on Oxaliplatin combined with 5-FU for 8 months. Well, I only managed 6 1/2 months of the Oxaliplatin because the sensitivity to cold was just too much for me... and this was in the summer! I also got some pretty severe neuropathy (numbing/nerve damage) in my feet, which seems to have gotten worse since I've been off the chemo for a year. Like I say, your mileage will vary depending on your own system.

    But you will do just fine with 6 rounds! It took me at least 10 rounds before I started getting any kind of neuropathy. As for the sensitivity to cold... it will happen for sure when you are getting the IV infusion of Oxaliplatin and will probably last for 2-3 days where you want to be real careful about anything cold. I'm not sure where you live but if your winters are colder than 60F, you are going to want to be really bundled up to go outside. Just breathing cool air can affect your throat, of all things! But don't panic if you get this sensitivity to cold. It will pass and after a couple of days, you can go back to eating/drinking/touching cold things again :) And I would bet after 6 rounds, that won't be enough to do any kind of permanent nerve damage in your hands or feet.

    Now that you have found us... do keep coming back! I'm sure you will have more questions as time goes on... and here is the place to get the best answers because people here have been through what you are asking about :)

    Huggggs,

    Cheryl

    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!
  • pcs1453
    pcs1453 Member Posts: 75
    maglets said:

    best of luck
    I want to wish you the very very best ....this forum really does seem to have a wealth of people with so much love and experience. I will be starting the exact same routine as you in 2 weeks and I too have the worst nerves about it......and I have done chemo before....twice before. I think it is perfectly normal to feel unsure about the whole thing and I always think it's easier once you are actually into it rather than just worrying about it.

    I hope you'll stay in touch
    You are going to do just fine.

    Big Hugs
    Mags

    Good luck to you too!!
    This is your third round, good luck to you! I will stay in touch. This is a great place for support. First infusion out of the way so at least I know what to expect. So many of the comments make me feel the Xeloda may not be too bad. I guess I will find out soon. So far so good.
  • pcs1453
    pcs1453 Member Posts: 75
    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

    Right On The Money
    You are right on about the oxy side effects. I've just been saying that on the firt bite of anything I eat I get the jaw pain. Coughing sends pain around my eyes. Tonight will be my 4th dose of xeloda, but so far so good. I think the anti nausea meds must work, no nausea so far. Time will tell as I get further into treatment but I certainly am hoping I will be one who sails through. Thanks Tara!
  • pcs1453
    pcs1453 Member Posts: 75
    tootsie1 said:

    welcome
    Hi. Welcome to our group! I think you'll find it very helpful and comforting. I'm sorry about this ugly turn of events in your life, but I do hope and pray you won't have too bad a time of it. Keep us posted as you feel well enough.

    *hugs*
    Gail

    Hugs to You
    Thanks for the welcome. It is great to have a place to find support and comfort. I will keep you posted. Paula
  • pcs1453
    pcs1453 Member Posts: 75
    Mike49 said:

    Live your life and think long term
    You've already received alot of advice and I'll only add one thing, think long term, we can beat this thing, live your life along the way. There will be days that you don't feel good, sure, but don't forget to still do things and live your life, it will help you enormously with the psychology of this disease. I took my two sons to the golf course yesterday, here in Arizona its in the 70s and although I got a little tired but I needed to do something normal, our lives are bigger than just chemo and tests. Good luck, your apprehension of starting is normal, I remember the first infusion, in my mind I thought I'd feel awful immediately, it was better than I thought it would be.

    Good luck.

    Mike

    Good Advice
    Hi Mike,

    You are so right, attitude is everything and I am trying to stay positive and look at the big picture. I went in yesterday for my first infusion. Getting hooked up with my port was quick and painless. After the RN talked for a few minutes a pharmacist came over to talk. She said the same things you said. If you feel OK there is no reason you can't get out and do what you feel like. I intend to do what I can and get out of the house. If I do OK, it would be great to head to Scottsdale in March for a few days and watch some baseball. My husband would love to go again.

    I really didn't feel too bad today. It wasn't as bad as I thought it would be. Mostly, just tired. With any luck I'll be out getting some exercise soon.

    Paula

  • pamness
    pamness Member Posts: 519 Member
    pcs1453 said:

    Good Advice
    Hi Mike,

    You are so right, attitude is everything and I am trying to stay positive and look at the big picture. I went in yesterday for my first infusion. Getting hooked up with my port was quick and painless. After the RN talked for a few minutes a pharmacist came over to talk. She said the same things you said. If you feel OK there is no reason you can't get out and do what you feel like. I intend to do what I can and get out of the house. If I do OK, it would be great to head to Scottsdale in March for a few days and watch some baseball. My husband would love to go again.

    I really didn't feel too bad today. It wasn't as bad as I thought it would be. Mostly, just tired. With any luck I'll be out getting some exercise soon.

    Paula

    Hi I was diagnosed stage IIIA
    I am from California, all my brothers and sister and their significant others live in the East Bay, in California. I was born in San Francisco.

    I currently live in Boston and was diagnosed stage IIIA - one polyp and two lymph nodes (out of 19) positive. I had a colon resection, 6 rounds of folfox (oxalyplatin, levorcin and 5FU, by . Pretty standard treatment, as I understand it for stage 3A colon cancer.

    I was lucky, I had the jaw pain for the first bite - ick, ick, ick. I didn't have huge cold sensitivity in my hands or feet in the beginning. I had my chemo in the spring. I did get neuropathy in my hands and feet after four rounds.

    I was scheduled for eight rounds of folfox and finished six with the oxaliplatin and the last two with the leucovorin and 5fu. I finished all the radiation and 5fu. I am currently 17 months ned.

    I had a lot of trouble with the oxaliplatin. Nausea was a big deal. You seem to be doing well.

    All the treatment does make you tired. Some of the anti-nausea drugs make you tired and some - the steroids - make you wired. I hope that eventually you will find what is right for you.

    By all means, go out and do whatever you feel like doing - wash your hands often, when in a crowded environment and enjoy. If you are really tired, rest.

    Sounds like you are doing really well. The first chemo is an experience that most of us will never forget - lots of anxiety, and then -- not so bad - I am saying that even though I had a little difficulty.

    Hope all goes really well,

    Pam
  • CherylHutch
    CherylHutch Member Posts: 1,375
    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!

    Good going... one down!!
    Hey PCS :)

    Yep... the jaw pain is a common side affect too. I didn't have that one myself, but many others have commented on it. As for coughing and getting the same pain around the eyes... I found my eyes to be dry while on it, so they always felt like I needed to blink more. When you see your oncologist, he/she will ask if you've had any side affects. I would write them down now as you experience them because when you are talking to him/her you are bound to forget some of them... or you'll be so relieved that they weren't as bad as you thought, you'll end up saying, "No, I actually feel great!" :D Your onc should be aware of any and all side affects you have because if they do gradually start getting worse, they can adjust your levels.

    The one thing my oncologist said to me... throughout your treatment, there is no reason you should ever feel in pain, or uncomfortable. For every side affect, there is a med to counteract it... but you have to tell me what you are feeling so I can fix it for you. And sure enough, she did :)

    I'm guessing here but have they got you on an oral steroid for when you are getting the Oxi? The reason I ask... the steroid can make you stay awake, even though you know you are tired! It's crazy, but the chemo can tire you and the steroid gives you a buzz... so the two fight each other :) But the steroid isn't for the whole two weeks, so that should calm down :)

    Huggggs,

    Cheryl
  • This comment has been removed by the Moderator
  • pcs1453
    pcs1453 Member Posts: 75

    Good going... one down!!
    Hey PCS :)

    Yep... the jaw pain is a common side affect too. I didn't have that one myself, but many others have commented on it. As for coughing and getting the same pain around the eyes... I found my eyes to be dry while on it, so they always felt like I needed to blink more. When you see your oncologist, he/she will ask if you've had any side affects. I would write them down now as you experience them because when you are talking to him/her you are bound to forget some of them... or you'll be so relieved that they weren't as bad as you thought, you'll end up saying, "No, I actually feel great!" :D Your onc should be aware of any and all side affects you have because if they do gradually start getting worse, they can adjust your levels.

    The one thing my oncologist said to me... throughout your treatment, there is no reason you should ever feel in pain, or uncomfortable. For every side affect, there is a med to counteract it... but you have to tell me what you are feeling so I can fix it for you. And sure enough, she did :)

    I'm guessing here but have they got you on an oral steroid for when you are getting the Oxi? The reason I ask... the steroid can make you stay awake, even though you know you are tired! It's crazy, but the chemo can tire you and the steroid gives you a buzz... so the two fight each other :) But the steroid isn't for the whole two weeks, so that should calm down :)

    Huggggs,

    Cheryl

    Good Advice

    Thanks for the advice Cheryl. I will be sure to let my onc know of any issues with side effects. I am keeping a log of day to day activities, how I feel, side effects, etc. because I know it is hard to remember everything.

    You asked about steroids. When I showed up for chemo the first 30 minute bag was steroids. Maybe that is what kept me awake. My next round will be earlier in the day so maybe it will wear off by bed time. I took a couple Tylenol PMs last night and did get a pretty good nights sleep.

    Hugs to you Cheryl, Stay well, Paula
  • pcs1453
    pcs1453 Member Posts: 75
    unknown said:

    This comment has been removed by the Moderator

    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