newby with questions

nmlandlady
nmlandlady Member Posts: 37
edited March 2014 in Colorectal Cancer #1
Hi. I am a newby from NM. Recently diagnosed-stage 3- one lymph node involved. I started the Oxi-Leucovorin-5FU on Sept 22nd. The first week wasn't too bad except for the "jaw lock" and the throat constiction with the intolerable cold. The second week has been worse as far as all the symptoms especially the nausea and the fatique. Mouth sores already starting. I am having a hard time finding foods I can eat. Does anyone have any suggestions? (anything). How do you get through this? Thanks
«1

Comments

  • Shayenne
    Shayenne Member Posts: 2,342
    Welcome!
    ...Hi NMLandLady, and welcome to our humble family.

    I am not on the same chemo as you, I am on Folfiri w/Avastin, so have no experience with the Oxyplatin chemo, there are plenty on this board who are on it, but I can tell you what I have read about it sure did scare me.

    I have read about the Neuropathy, a tingling in the hands and feet that can become very painful, and not sure if there is much out there to help it. Craig would suggest Big Balm cream, to stay ahead of it, I would put it on my feet 3 times a day, and maybe even putting it on before bed, with socks to cover it, may help, I moisturize my feet that way sometimes anyway, and it comes out nice and soft :)

    You will have that jaw lock and some face pain, I have read about the cold sensitivity it has, you must wear gloves when going into the fridge, even in the grocery stores, don't reach for anything cold without the gloves, don't eat or drink anything cold, microwave it, sometimes even room temperature stuff can be too cold, so nuke it up, or else I hear it feels like glass going down your throat. You should eat whatever you want, chicken, soups, chili, but eat, and maybe drink some Ensure, to keep your weight up, so you can fight this thing, you need the strength for chemo. I have a couple of cookbooks I bought from Amazon on Recipes for Cancer, and they are great, there is one that has recipes to fight nausea, one to fight fatigue, and so on, and they taste really good.

    You can get through this, I don't know everything on the Folfox, but am sure someone else will come help with any questions you have, with the mouth sores, there is a pink magic mouthwash your doctor can prescribe that has Miralax, Benadryl and Lidocaine or something in it that will help numb the pain, and also use Biotene toothpaste and mouthwash, which made a couple of my mouth sores go away in a couple days. I can't even use Crest anymore, or Mentadent, since it burnt the crap out of my mouth, though I can now use Arm and Hammer Baking Soda and Peroxide as well alot better.

    I hope you feel better, and know you are not alone, and we are here for you :)

    Hugsss!
    ~Donna
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    WELCOME :)
    Hi!

    Have them introduce Magnesium Sulfate by IV along with your Oxy - it will help your cold sensations and you will tolerate your treatment much better, if this is able to work for you.

    The group always talks about Magic Mouthwah to help ease mouth sores - they will come behind me and tell you about it - it is an Rx that you can get filled.

    For Fatigue, one word - REST and REST! Ok, 2 words :)

    For nutrition, experiment with different foods after the mouthwash to see what you can handle...Ensure or Boost or Carnations Instant Milk is a good way to get some calories and it tastes OK. PB&J sandwiches, or some biscuits and gravy might be good. Chicken noodle soup or some scrambled eggs and toast.

    Welcome to the site BTW, I am so glad you found your way here and very early too, so everyone here will be able to give you great advice, reciples, support and whatever you need - all you gotta' do is call - and you've got friends...that's from the James Taylor song and I just opened a post about it and shared it with the group and we all loved the line, so since you are here, it's for you too.

    I've got a surgery in 5 days, so I'll be out of pocket (temporarily) but will be checking in to see how you are faring.

    The rest of this wonderful community will be right behind me with the Welcome Wagon :)

    One last thing I can tell you: Keep REPORTING your symptoms to your oncologist as they can adjust your chemo dosages during your treatment.

    Have a good day and we'll be in touch
    -Craig
  • nmlandlady
    nmlandlady Member Posts: 37
    Shayenne said:

    Welcome!
    ...Hi NMLandLady, and welcome to our humble family.

    I am not on the same chemo as you, I am on Folfiri w/Avastin, so have no experience with the Oxyplatin chemo, there are plenty on this board who are on it, but I can tell you what I have read about it sure did scare me.

    I have read about the Neuropathy, a tingling in the hands and feet that can become very painful, and not sure if there is much out there to help it. Craig would suggest Big Balm cream, to stay ahead of it, I would put it on my feet 3 times a day, and maybe even putting it on before bed, with socks to cover it, may help, I moisturize my feet that way sometimes anyway, and it comes out nice and soft :)

    You will have that jaw lock and some face pain, I have read about the cold sensitivity it has, you must wear gloves when going into the fridge, even in the grocery stores, don't reach for anything cold without the gloves, don't eat or drink anything cold, microwave it, sometimes even room temperature stuff can be too cold, so nuke it up, or else I hear it feels like glass going down your throat. You should eat whatever you want, chicken, soups, chili, but eat, and maybe drink some Ensure, to keep your weight up, so you can fight this thing, you need the strength for chemo. I have a couple of cookbooks I bought from Amazon on Recipes for Cancer, and they are great, there is one that has recipes to fight nausea, one to fight fatigue, and so on, and they taste really good.

    You can get through this, I don't know everything on the Folfox, but am sure someone else will come help with any questions you have, with the mouth sores, there is a pink magic mouthwash your doctor can prescribe that has Miralax, Benadryl and Lidocaine or something in it that will help numb the pain, and also use Biotene toothpaste and mouthwash, which made a couple of my mouth sores go away in a couple days. I can't even use Crest anymore, or Mentadent, since it burnt the crap out of my mouth, though I can now use Arm and Hammer Baking Soda and Peroxide as well alot better.

    I hope you feel better, and know you are not alone, and we are here for you :)

    Hugsss!
    ~Donna

    newby
    Donna, I can't believe I already have a response from what I have read to be one of the most caring, compassionate souls on the board. Thank you so much for the info. I plan to look at Amazon asap for the books. Thank you again.
    Sharon
  • nmlandlady
    nmlandlady Member Posts: 37
    Sundanceh said:

    WELCOME :)
    Hi!

    Have them introduce Magnesium Sulfate by IV along with your Oxy - it will help your cold sensations and you will tolerate your treatment much better, if this is able to work for you.

    The group always talks about Magic Mouthwah to help ease mouth sores - they will come behind me and tell you about it - it is an Rx that you can get filled.

    For Fatigue, one word - REST and REST! Ok, 2 words :)

    For nutrition, experiment with different foods after the mouthwash to see what you can handle...Ensure or Boost or Carnations Instant Milk is a good way to get some calories and it tastes OK. PB&J sandwiches, or some biscuits and gravy might be good. Chicken noodle soup or some scrambled eggs and toast.

    Welcome to the site BTW, I am so glad you found your way here and very early too, so everyone here will be able to give you great advice, reciples, support and whatever you need - all you gotta' do is call - and you've got friends...that's from the James Taylor song and I just opened a post about it and shared it with the group and we all loved the line, so since you are here, it's for you too.

    I've got a surgery in 5 days, so I'll be out of pocket (temporarily) but will be checking in to see how you are faring.

    The rest of this wonderful community will be right behind me with the Welcome Wagon :)

    One last thing I can tell you: Keep REPORTING your symptoms to your oncologist as they can adjust your chemo dosages during your treatment.

    Have a good day and we'll be in touch
    -Craig

    newby
    Thank you Craig. I read about your surgery on Friday. My prayers are with you for an uneventful day. I read about how you have been there for so many people. Thank you for responding to my post and making me feel welcome. You and Donna really surprised me. I feel blessed to have found this site and know I will benefit greatly from it.
    Thanks again,
    Sharon
  • thready
    thready Member Posts: 474
    Hello newby in NM
    Hi, I am a newby in Texas. I am a stage 3B also, unless scans tomorrow show something else, but I really don't think we will have any surprises! I have not had any chemo yet, that comes in 2 weeks. A fellow that my husband works with was also a 3B and he said there is some sort of magic mouth wash that we need to request. He said rest when you feel bad, exercise (walk) and enjoy the good days.

    The people on this site are the best resouce ever, I am sure you will get bunches of ideas. It is very helpful to be able to rely on those who have gone before us. Take care.

    Jan
  • nmlandlady
    nmlandlady Member Posts: 37
    thready said:

    Hello newby in NM
    Hi, I am a newby in Texas. I am a stage 3B also, unless scans tomorrow show something else, but I really don't think we will have any surprises! I have not had any chemo yet, that comes in 2 weeks. A fellow that my husband works with was also a 3B and he said there is some sort of magic mouth wash that we need to request. He said rest when you feel bad, exercise (walk) and enjoy the good days.

    The people on this site are the best resouce ever, I am sure you will get bunches of ideas. It is very helpful to be able to rely on those who have gone before us. Take care.

    Jan

    Thank you Jan. I used to be
    Thank you Jan. I used to be from Texas. Born and lived there many years.I have been pleasantly surprised already to the responses on the board.
    Thanks again,
    Sharon
  • just4Brooks
    just4Brooks Member Posts: 980
    We got the same thing
    Hi Sharon, Good to met you. My name is Brooks, I have stage 3 colorectal Cancer too and I just got done with my 3rd treatment of Oxy and 5FU. The jaw lock may have been from the Compazeene(sp) anti nausea pills. Are you on it? My neck locked up on me for four hours from Campazeene and it was very painful. Last week my doctor put me on Emend for nausea and it worked WONDERS!!! As far as eating goes Pasta seems to work for me. I have also found that it works best to snack throughout the day. No large meals. I'm sure that others will be on here soon with more answers.

    Keep up the fight
    Brooks
  • Patteee
    Patteee Member Posts: 945
    I was on what you are on and
    I was on what you are on and oh boy
    I still can't believe it when I read notes from others along the lines of, "oh it really wasn't that bad!"

    How did I do it. *sigh* I had the best caregiver in the world, my mother. Who would drop everything in a moment, jump in her car and make the 3 hour trip to help and support me. I would have treatment generally on a Mon or Tues and by the weekend I would be down for the count. Toward the end of the treatments? Most days I would be down- very weak, horrid mouth issues, blah blah blah. Hospitalized 3 times for chemo issues- so yes, I beg to differ that "it really wasn't that bad".

    I think the best piece of advice I can give to you- stay on top of the mouth sores, prepare for the bad days when you are feeling good, let go of the stuff that doesn't matter (like a clean house) and ask for help. One of the best gifts my co-worker could give me was she came over and scrubbed my kitchen and 2 bathrooms. I was in tears with such an incredible gift. Make sure your oncologist knows the issues you are having- it is those issues that help them to determine when or if your oxy should be cut. Mine were chopped away at bit by bit- finally after treatment 8, I was in the hospital for dehydration and mouth sores, my oncologist came to my hospital door and said, "guess what, you are done with oxy!" (he couldn't even come in the room without being totally drapped as I was in isolation).
  • nmlandlady
    nmlandlady Member Posts: 37

    We got the same thing
    Hi Sharon, Good to met you. My name is Brooks, I have stage 3 colorectal Cancer too and I just got done with my 3rd treatment of Oxy and 5FU. The jaw lock may have been from the Compazeene(sp) anti nausea pills. Are you on it? My neck locked up on me for four hours from Campazeene and it was very painful. Last week my doctor put me on Emend for nausea and it worked WONDERS!!! As far as eating goes Pasta seems to work for me. I have also found that it works best to snack throughout the day. No large meals. I'm sure that others will be on here soon with more answers.

    Keep up the fight
    Brooks

    Nice to meet you too Brooks.
    Nice to meet you too Brooks. I have taken a few compazine, more after the first treatment than this week. I only have had one this week but according to the oncology nurse, the feeling of jaw lock (pain) was caused by the Oxiliplatin. How soon after your treatment can you drink something that is colder than room temp? My first treatment they told me I wouldn't be able to drink anything cold but I thought it wouldn't be that day. My husband and I went for lunch after my treatment and I ordered my usual-large glass of ice tea. Took a drink and thought I would die with my throat constricting. Even though I knew it wasn't actually constricting it felt like it. I have heard about Emend but I don't think my insurance will pay for it and I understand it is pretty expensive. I like some pasta. Are you able to tolerate the tomatoe sauce? Thank you so much for your response. It is so great to talk with someone who is going through the same things you are.
    Sharon
  • nmlandlady
    nmlandlady Member Posts: 37
    Patteee said:

    I was on what you are on and
    I was on what you are on and oh boy
    I still can't believe it when I read notes from others along the lines of, "oh it really wasn't that bad!"

    How did I do it. *sigh* I had the best caregiver in the world, my mother. Who would drop everything in a moment, jump in her car and make the 3 hour trip to help and support me. I would have treatment generally on a Mon or Tues and by the weekend I would be down for the count. Toward the end of the treatments? Most days I would be down- very weak, horrid mouth issues, blah blah blah. Hospitalized 3 times for chemo issues- so yes, I beg to differ that "it really wasn't that bad".

    I think the best piece of advice I can give to you- stay on top of the mouth sores, prepare for the bad days when you are feeling good, let go of the stuff that doesn't matter (like a clean house) and ask for help. One of the best gifts my co-worker could give me was she came over and scrubbed my kitchen and 2 bathrooms. I was in tears with such an incredible gift. Make sure your oncologist knows the issues you are having- it is those issues that help them to determine when or if your oxy should be cut. Mine were chopped away at bit by bit- finally after treatment 8, I was in the hospital for dehydration and mouth sores, my oncologist came to my hospital door and said, "guess what, you are done with oxy!" (he couldn't even come in the room without being totally drapped as I was in isolation).

    Thank you so much for your
    Thank you so much for your post. Were you able to go back to work? That is one of my fears that I won't be able to work. I had to take off today because of the nausea and fatigue.
    Thanks again,
    Sharon
  • Patteee
    Patteee Member Posts: 945

    Thank you so much for your
    Thank you so much for your post. Were you able to go back to work? That is one of my fears that I won't be able to work. I had to take off today because of the nausea and fatigue.
    Thanks again,
    Sharon

    I am a teacher- started off
    I am a teacher- started off fine- then went to half-days and then went to half days 2-3 days a week. It actually helped me to focus on going into work. Force myself to take a shower, clean clothes, etc. I would get to school totally whipped, but with this sense of accomplishment. Fortunately I had a ton of sick leave I could use.
  • Shayenne
    Shayenne Member Posts: 2,342

    newby
    Donna, I can't believe I already have a response from what I have read to be one of the most caring, compassionate souls on the board. Thank you so much for the info. I plan to look at Amazon asap for the books. Thank you again.
    Sharon

    I know....
    ... the feelings of what you're going through, and just try to be there for others, hoping to help even alittle! I think you'll do just fine like us, getting knocked down and just picking yourself up with this disease, don't let it get to you, you just keep on going, no matter what, we're here when you need us, if not right away, we'll be on soon!

    Hugsss!
    ~Donna
  • just4Brooks
    just4Brooks Member Posts: 980

    Nice to meet you too Brooks.
    Nice to meet you too Brooks. I have taken a few compazine, more after the first treatment than this week. I only have had one this week but according to the oncology nurse, the feeling of jaw lock (pain) was caused by the Oxiliplatin. How soon after your treatment can you drink something that is colder than room temp? My first treatment they told me I wouldn't be able to drink anything cold but I thought it wouldn't be that day. My husband and I went for lunch after my treatment and I ordered my usual-large glass of ice tea. Took a drink and thought I would die with my throat constricting. Even though I knew it wasn't actually constricting it felt like it. I have heard about Emend but I don't think my insurance will pay for it and I understand it is pretty expensive. I like some pasta. Are you able to tolerate the tomatoe sauce? Thank you so much for your response. It is so great to talk with someone who is going through the same things you are.
    Sharon

    Sharon
    As far as drinking anything cold. I think it took about a week after my first treatment to be able to drink something cool (NOT COLD). Now after my 3rd treatment I cant have anything cool or cold at all. I'd check with your insurance on that Emend. It has sure helped me and I know others who are on it and it seems to work best for them. Most of the pasta I eat is without tomato sause.

    Contact me anytime you need to

    Brooks
  • thready
    thready Member Posts: 474
    Patteee said:

    I was on what you are on and
    I was on what you are on and oh boy
    I still can't believe it when I read notes from others along the lines of, "oh it really wasn't that bad!"

    How did I do it. *sigh* I had the best caregiver in the world, my mother. Who would drop everything in a moment, jump in her car and make the 3 hour trip to help and support me. I would have treatment generally on a Mon or Tues and by the weekend I would be down for the count. Toward the end of the treatments? Most days I would be down- very weak, horrid mouth issues, blah blah blah. Hospitalized 3 times for chemo issues- so yes, I beg to differ that "it really wasn't that bad".

    I think the best piece of advice I can give to you- stay on top of the mouth sores, prepare for the bad days when you are feeling good, let go of the stuff that doesn't matter (like a clean house) and ask for help. One of the best gifts my co-worker could give me was she came over and scrubbed my kitchen and 2 bathrooms. I was in tears with such an incredible gift. Make sure your oncologist knows the issues you are having- it is those issues that help them to determine when or if your oxy should be cut. Mine were chopped away at bit by bit- finally after treatment 8, I was in the hospital for dehydration and mouth sores, my oncologist came to my hospital door and said, "guess what, you are done with oxy!" (he couldn't even come in the room without being totally drapped as I was in isolation).

    Chemo not bad
    I appreciate Patteee for saying that chemo is tough. I don't want to go into this thinking that I will be getting meds, then on my way down happy street. That is the way I would want it but I want to be prepared. My Dr's office spent 6 hours giving me the facts from different perspectives and I know I face some tough times, but was not sure when all this will take place. I know it varies but at least I know it could happen early. My husband and family are also knowledgeable of what we might encounter but did not know when. Thank you Patteee!

    I have only heard from two people who say they had mild fatigue and could keep going. I am also concerned about work. They want an employee who is there to work. I don't have the option of doing work during my good days. This discussion has been frank, but boy is it helpful.

    The fellow I refered to above talked about the side effects. He also said it is not easy.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Welcome
    I would like to also welcome you to our message boards. You now have become a member of the family. We are here to help you, educate (as much as we can), support you and lift you (and much more). There is probably not a subject that we haven't covered on these message boards.

    I was on the same "cocktail" as you and my second treatment it starting hitting me. The cold sensitivity in throat and hands were bad, especially when you forgot about it. I would end up dropping things back onto the racks at the grocery store when I was in the vegetable isle. I also was always cold even though I had this during the summer. The neuropathy can be bad and the more it accumulates in your body the more the hands and feet begin to tingle. I was told by my oncologist to take vitamin B6 and it did help a good bit. I agree with the magic mouth wash. I only had to use it once, but it made a big difference. I actually never got sick but I did take the compazine but it never worked for me because I have an ileostomy and it is coated and it would pass right through. There are many other prescriptions out there to help with that. Also try ginger tea or just eating a little slice of ginger.

    Eat whatever you can tolerate as you will probably lose weight because you don't feel like eating, or nothing sounds good, or you just can't get it down, but like suggested, the Ensure (or something) similar helps keep some nutrients in you.

    Once again welcome to the board. And come here anytime you want or need an answer. There is usually someone on at all hours. Oh and one more thing, if you are getting steroids before infusion, this will keep you up for two to three days - hence that was why I was answering posts at 3:30 in the morning :)

    Keep us posted as to how you are doing.

    Kim
  • earied
    earied Member Posts: 22
    New
    Hi Sharon, You can get the Emend from the drug company for free if you meet the criteria. If your clinic or the hospital has a social worker they can help you fill out and send in the paper work or the nurse at the doctor's office. I did receive it for free. I took it for a couple of treatments then I could tolerate it fine. I was on the same chemo you were after I did radiation/chemo. Try oatmeal or bagels, ate a lot of that. The neuropaty/cold with drinking usually stops after 5 days. Then a month after I finished treatment is hit hard in my hands and feet and dealing with that now. For diarrhea take 2 immodium AD when it hits and 1 ever time or every hour after that. Increase your fiber if you can.

    Hang in there.

    Ann
  • earied
    earied Member Posts: 22
    New
    Hi Sharon, You can get the Emend from the drug company for free if you meet the criteria. If your clinic or the hospital has a social worker they can help you fill out and send in the paper work or the nurse at the doctor's office. I did receive it for free. I took it for a couple of treatments then I could tolerate it fine. I was on the same chemo you were after I did radiation/chemo. Try oatmeal or bagels, ate a lot of that. The neuropaty/cold with drinking usually stops after 5 days. Then a month after I finished treatment is hit hard in my hands and feet and dealing with that now. For diarrhea take 2 immodium AD when it hits and 1 ever time or every hour after that. Increase your fiber if you can.

    Hang in there.

    Ann
  • abmb
    abmb Member Posts: 311
    Welcome to this wonderful support group
    My husband was diagnosed in April with Stage 3C colon cancer and is receiving the same treatment you are, cold sensitivity, nausea, & fatigue are probably the worse he experiences. His onc did have him on Emend and it is great, but the 2 pills you have to take the 2 following days are pretty expensive so he has opt not to use that med and now he takes Prochlorper 10 mg and piggy backs it with Zofran 8 mg. That helps him, my biggest problem is he tries to hold back on taking the pills sometimes until it is too late! I hound him too much. We do tell his onc everything, he is there to help you, you pay them, which means they work for you. Do wear the gloves, less painful. I just want you to know that I don't know what everyone feels like, but this is a great board to come too. They help, even if you don't like to post, just reading their posts help. God Bless and take care. Margaret
  • ittapp
    ittapp Member Posts: 383
    Hello, I am stage IV and on
    Hello, I am stage IV and on Folfox with Avastan, it is the same as you without the avastan. Avastan is for stage IV patients. I did have the Oxy for 6 treatments and will be doing my 9th treatment tomorrow. Anyway it was a little rough doing oxi but it is something you can do. They did cut mine because the neuropothy was lingering into the next treatment.As far as the other is concerned I am doing fine, i am a little fatigued but I am still doing most of what I did before. I only have had two mouth sores and the magic mouthwash cleared it right up quickly. I do have a hard time sleeping so I take ambien everynight. When I did have the oxi I ate things like chicken noodle soup, cottage cheese,yogurt and could not get enough watermelon at room temp. God Bless you, Patti
  • mommyof2kds
    mommyof2kds Member Posts: 519
    ittapp said:

    Hello, I am stage IV and on
    Hello, I am stage IV and on Folfox with Avastan, it is the same as you without the avastan. Avastan is for stage IV patients. I did have the Oxy for 6 treatments and will be doing my 9th treatment tomorrow. Anyway it was a little rough doing oxi but it is something you can do. They did cut mine because the neuropothy was lingering into the next treatment.As far as the other is concerned I am doing fine, i am a little fatigued but I am still doing most of what I did before. I only have had two mouth sores and the magic mouthwash cleared it right up quickly. I do have a hard time sleeping so I take ambien everynight. When I did have the oxi I ate things like chicken noodle soup, cottage cheese,yogurt and could not get enough watermelon at room temp. God Bless you, Patti

    Welcome, you will find this
    Welcome, you will find this board very helpful and full of people who care and provide support. I was diagnosed in feb 08 with stage 3 rectal cancer. I have been through rad/chemo, have had 2 surgeries and now back on chemo. I was getting the same chemo as you, but had an allergic reaction on #6 oxy. Therefore I am not getting it anymore. YOu have already gotten some good advice on what to us for mouth sores. With the regards to the cold sensitivity, my oncologist gave me IV infusions of magnesium and calcium before and after the oxy treatment to help with the side effects. I never did receive any neuropathy issues. I am one of the lucky ones. With the help of being younger and getting the IV infusions-that is why. I was able to enjoy cold drinks about 5 daysd after the the infusion.
    One bit of advice, rest rest and rest. If you are tired that means your body needs rest, give in to it. It will help you feel better. I was very tired. It will be a hard road with lots of feelings of uncertainity, but you can do it. We are all doing it and are all helping each other. God Bless. Hang in there.... Petrina