Starting chemo

Denise1966
Denise1966 Member Posts: 90
edited March 2014 in Colorectal Cancer #1
Hi everyone,

I'm going in on wednesday for my first round of Folfox, I would appreciate any advise or suggestions on how to make this easier as I'm getting really nervous about this. I did pretty well with the 5-fu and radiation that I did already, so I'm hoping this is a good sign.
They told me I should be there about 3-1/2-4 hours is that right? Any help would be appreciated.

Thanks,
Denise

Comments

  • chynabear
    chynabear Member Posts: 481 Member
    #2
    I had Folfox nearly 4 years
    I had Folfox nearly 4 years ago... it was 3 1/2 - 4 hours two days in a row and then I wore a fanny pack for 24 hours.

    My advice and advice passed on to me:

    Treat side-effects ASAP. Have anti-nausea meds on hand and meds to treat constipation and some immodium. I had two anti-nausea meds... one light weight and one heavy duty. Controlled mine just fine. Either request "magic mouthwash" (not sure what the real name is) or learn how to make a mouthwash to prevent mouth sores. I made my own (will look for recipe) and never developed a sore.

    Anticipate hightened sensitivity to cold. Luke-warm drinks will feel nearly ice cold and you will receive a "jolt" to anything you touch, eat, or drink that is cold. My description, it felt like I was swallowing knives. Wear gloves when reaching into freezer or fridge.

    Set aside time to rest. Everyone reacts differently. I was extremely tired for 2-3 days post infusion.

    Drink plenty of water. It doesn't taste great... although many things don't taste good on chemo... but this is one thing I would have concentrated on more if I had to do over. Foods will taste differently, so be prepared to find something that you will be able to eat.

    Good luck. My thoughts are with you. Keep strong!

    Tricia
  • polarprincess
    polarprincess Member Posts: 202
    #3
    first chemo
    hi, i just completed my first fulfox 2 weeks ago, and am going for my second this tuesday. the good news is that they told me most people tolerate it pretty well. For me, the first day I could barely walk when i stood up- i couldn't feel my feet, but that went away within minutes. The next morning, the backs of my legs were really sore, and that went away within 2 days. When i cried my eyeballs hurt, when i took my first bite of food, i got a jaw spasm. My nose was runny- weird things. They gave me good nausea meds during the infusion, and i have not had any nausea. The drinking cold water thing has lasted pretty much the whole 2 weeks, but it has gotten better. If you are desperately thirsty for something cold which i was, i discovered that i could handle cold sprite because the carbonation was so strong, i couldn't feel the glass shard feeling, so that was a relief for me. However i did not try that until about a week in. I got my chemo on tuesday and did not start feeling really yucky right away, but i did have about 9 days where i felt yucky and extremely tired at least part of the day. I slept alot, and did not have much of an appetite. I am a dietetic technician and knew to make sure i had things in the house like chicken noodle soup, applesauce, bananas, puddings, soft easy to digest things, and plenty of room temperature water to stay hydrated, because if you do not stay hydrated, your symptoms will be much worse. I am also taking a lactobacillus/acidophilus tablet daily, and I have only had one episode of diarrhea through the whole thing, so hopefully that is helping. The best news, is that for the last several days i have felt great- just like my old self, so i definitely did get a reprieve, and hopefully you will too. For a dew days there I was feeling really depressed, but now i know there is hope for each cycle hopefully.
  • msccolon
    msccolon Member Posts: 1,917 Member
    #4
    polarprincess said:

    first chemo
    hi, i just completed my first fulfox 2 weeks ago, and am going for my second this tuesday. the good news is that they told me most people tolerate it pretty well. For me, the first day I could barely walk when i stood up- i couldn't feel my feet, but that went away within minutes. The next morning, the backs of my legs were really sore, and that went away within 2 days. When i cried my eyeballs hurt, when i took my first bite of food, i got a jaw spasm. My nose was runny- weird things. They gave me good nausea meds during the infusion, and i have not had any nausea. The drinking cold water thing has lasted pretty much the whole 2 weeks, but it has gotten better. If you are desperately thirsty for something cold which i was, i discovered that i could handle cold sprite because the carbonation was so strong, i couldn't feel the glass shard feeling, so that was a relief for me. However i did not try that until about a week in. I got my chemo on tuesday and did not start feeling really yucky right away, but i did have about 9 days where i felt yucky and extremely tired at least part of the day. I slept alot, and did not have much of an appetite. I am a dietetic technician and knew to make sure i had things in the house like chicken noodle soup, applesauce, bananas, puddings, soft easy to digest things, and plenty of room temperature water to stay hydrated, because if you do not stay hydrated, your symptoms will be much worse. I am also taking a lactobacillus/acidophilus tablet daily, and I have only had one episode of diarrhea through the whole thing, so hopefully that is helping. The best news, is that for the last several days i have felt great- just like my old self, so i definitely did get a reprieve, and hopefully you will too. For a dew days there I was feeling really depressed, but now i know there is hope for each cycle hopefully.

    Acidophilus tablet
    I also found that taking the lacto.../acido.. tablet daily helped cut down on the diarrhea. However, I found that if I took 2, i got terrible gas. I did still have diarrhea, but not nearly as bad and i bounced back quicker. What kind of puddings did you eat? I found any kind of dairy sent me running to the bathroom, so i ate yogurt instead. Rice water helps as well, the starch ... my mother used that remedy even when we were young. Mary
  • joj56
    joj56 Member Posts: 13
    #5
    Hi Denise
    I will probably start the folfox treatments in about 2 weeks. I am scheduled to get my port put in next week.
    I will be anxious to follow how you do with your treatment since I will be right behind you.
    I was told my treatment will be for 2 hours, sent home with the portable pump (fanny pack) for 48 hrs. then return to get un-hooked, and repeat this every 2 weeks.
    Let's hope for the milder side of any side affects.
    You will be in my thoughts and prayers.
    Take care
    Peace
    Jeri
  • krystiesq
    krystiesq Member Posts: 240 Member
    #6
    joj56 said:

    Hi Denise
    I will probably start the folfox treatments in about 2 weeks. I am scheduled to get my port put in next week.
    I will be anxious to follow how you do with your treatment since I will be right behind you.
    I was told my treatment will be for 2 hours, sent home with the portable pump (fanny pack) for 48 hrs. then return to get un-hooked, and repeat this every 2 weeks.
    Let's hope for the milder side of any side affects.
    You will be in my thoughts and prayers.
    Take care
    Peace
    Jeri

    good for you
    Finding this place before beginning treatment. I wish I had before my mom started. She is done with first round and now on the second. She had folfox + avastin. The very first treatment she had side effects from oxliplatin...hands, nose, feet, tongue, all tingled. Cold anything was a no-no, including cold floors (we invested in rugs as her kitchen/bathroom is tiled). This summer is a blessing as cold air and weather hurts her hands & feet. Also, I think the best advice I can give without echoing everyone else is to relax on days where you're feeling badly and ask for help whether it be food, phone calls laundry...whatever use your friends/family. Concentrate on getting well. I'll add you to my thoughts and prayers along with everyone else here.

    peace
  • pamness
    pamness Member Posts: 524 Member
    #7
    Folfox - managing side effect
    I completed my cancer treatment a year ago. I did folfox first. I would give the following advice.

    1. Ask for emend (and possibly decadron for nausea). Decadron is steroid and makes you energetic and hungry but helps control the nausea. They will probably give it to you before infusion, if you have a large problem with nausea ask for it for three days following. Emend is the latest and strongest anti nausea drug - generally taken for three days - it is expensive and they might not offer it up, although at Mass General, it is now standard. Zolfran is the next strongest and you should have that to take next - if the nausea is strong - compazine is usually next for mild nausea - and attivan works for mild nausea and is a benzodiaspein so it relaxes you and helps you sleep. During my treatment, I used them all at various points in time. Many people don't need this much.
    2. Zolfran - though very effective can cause constipation - your chemo nurse and doctor should give you info about what to do about this - usually coalace and senakot due the trick. Eventually I took Miralax, but again I did folfox after surgery and before radiation.
    3. Diarrehea - usually immodium and if necessary lomotil.
    4. Drink, drink, drink - dehydration will make you feel terrible. If you have trouble with it, it might be worth doing what I did, I prophylatic appointment a week for fluids IV.
    5. The cold thing only lasted 4 or 5 days for me - but my jaw - just the first bite I took - hurt and it kicked in right away.
    6. If you start having neuropathy - tingling in your fingers and toes - tell your oncoclogist about it. Particularly if it doesn't go away.
    7. Eating - eat whatever you can - and what you feel like - my diet during chemo was a dietician's nightmare. Chicken noodle soup, cake, applesauce, and belive it or not pizza - without meat were staples. Bananas and potatoes are good too.

    All this is individual - many people breeze through it without too much trouble. I hope you are one of them.

    Oral B and Crest each make mouthwashes with alchohol which work well for mouth sores.

    The actual infusions are only about 2 hours for the oxaliplatin and a little time for the leukovorin - the bolus of 5Fu is fast - it's the waiting around time that adds an hour.

    Best wishes,

    Pam
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #8
    Denise, I didn't have chemo,
    Denise, I didn't have chemo, but I just wanted to wish you well with this new round. I was just wondering the other day about you were coming along.

    Gail
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #9
    Denise, I didn't have chemo,
    Denise, I didn't have chemo, but I just wanted to wish you well with this new round. I was just wondering the other day about you were coming along.

    Gail
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #10
    I wish you the best
    I hope that you tolerate the chemo. Hang in there. Keep us posted on your progress.

    Maureen
  • taraHK
    taraHK Member Posts: 1,952 Member
    #11
    Good luck!
    Wishing you all the best. You have already received good advice on some of the side effects like intolerance to cold liquids, tingling fingers and toes, nausea, diarrhea and/or constipation. Everyone reacts to chemo differently. For me, I found the whole experience wasn't that bad. My infusion was Thurs-Sat. On Sunday I lay pretty low. On Monday I still felt a little lousy but went in to work (I have flexible hours). And then I had 10 pretty good days! One thing that helped me a lot was to try to get some exercise. Obviously you have to listen to your own body -- and when you are tired, you must rest -- but I found that walking or yoga was good for my psychological state as well as my body.....All the best to you and don't hesitate to post with further questions.....Tara
  • dixchi
    dixchi Member Posts: 431
    #12
    Side Effects
    I am on my second of eight Folfox treatments; had four in the spring
    before surgery. I found that drinking fluids was somewhat of a problem
    but went away.....first the knife-life feeling in the throat and then
    the cold.....hate the taste of water but put a little Propel or South
    Beach Diet powder in it and that helped. Propel has vitamins in in
    and SBD powder is a fiber, protein mix. There may also be others out
    there; idea I guess is that it is cheaper to mix your own flavored water.
    Also had problems with 5-FU with hand-foot syndrome......mostly in hands
    but I later read that it is good idea not to put a lot of pressure on
    hands or feet with exercise or working on projects so I will back off
    in that area this time. Also, I had problems with constipation....so
    I was prescribed Sennocot, a mild laxative with stool softener. For
    dry skin, my doc suggested Udderly Smooth, a wonderful cream I will
    never stop using. Most hand creams have some form of drying alcohol
    base, this does not. It may be hard to find; I got mine over the internet.
    at drugstore.com. There is also Bee Balm but it is a heavier oily cream
    and I have not used it much. Hope all this helps.
  • Limey
    Limey Member Posts: 446 Member
    #13
    Folfox
    Get pleannty of rest. if you feel tired. Rest. It is really really important. drink lots of water, even though is may not be fun if you get neuropathy. hydration is a big deal, I never worried about asking for fluid inbetween chemo also, it helped me keep hydrated without having to drink the fluids.

    also, dont be afraid to ask fro pre meds to help with the naseau, I found that accupuncture helped me.
    Mark
  • Denise1966
    Denise1966 Member Posts: 90
    #14
    Thank You!!!
    I want to thank everyone for all of their advise and good wishes and thoughts. This site is full of wonderful people, it's so nice to have a site like this to go to. I have my fingers crossed that if I have to have side effects, that they're not too bad!
    Hope everyone has a great day!
    Denise
  • polarprincess
    polarprincess Member Posts: 202
    #15
    how is it going
    How did your first treatment go then? Hopefully you are doing ok.
  • Denise1966
    Denise1966 Member Posts: 90
    #16
    polarprincess said:

    how is it going
    How did your first treatment go then? Hopefully you are doing ok.

    1st one down
    Well, I had my first treatment last wed. It took about 3-1/2 hours total. When I came home, I was a bit tired, had jaw spasms when I chewed anything, learned quickly about drinking cold water and the pins in my throat and felt generally queasy. I was pretty much binded up on wed and thurs but, on friday I had a bout with diarrhea. I really was tired on friday and took a 2 hour nap when I came home and the queasiness was there all day. Today monday, I feel pretty good, so I'll enjoy this week and wait for next week again. I hope the side effects are generally the same (I can handle that) but I know they're going to get worse.....
  • msccolon
    msccolon Member Posts: 1,917 Member
    #17
    Denise1966 said:

    1st one down
    Well, I had my first treatment last wed. It took about 3-1/2 hours total. When I came home, I was a bit tired, had jaw spasms when I chewed anything, learned quickly about drinking cold water and the pins in my throat and felt generally queasy. I was pretty much binded up on wed and thurs but, on friday I had a bout with diarrhea. I really was tired on friday and took a 2 hour nap when I came home and the queasiness was there all day. Today monday, I feel pretty good, so I'll enjoy this week and wait for next week again. I hope the side effects are generally the same (I can handle that) but I know they're going to get worse.....

    Denise
    Glad to hear your side effects were minimal! I never worried about not having bowel movements cause I always knew they would clear themselves when the inevitable diarrhea came. In fact, I have NEVER had to worry about bowel movements since my initial resection surgery, even on opiates. Be sure to continue to nap when you get tired, it helps with some of the symptoms! Besides, if there ever is s time to be good to yourself, it's when you are on chemo! Don't KNOW that the side effects will get worse! Some people have very minimal side effects and even find later treatments easier! Good luck with continued treatment and I look forward to seeing how it goes for you! Mary
  • Denise1966
    Denise1966 Member Posts: 90
    #18
    polarprincess said:

    how is it going
    How did your first treatment go then? Hopefully you are doing ok.

    Polarprincess
    Just checking to see how your second treatment went. This week has been pretty good for me.
    Hope to hear from you soon.
  • polarprincess
    polarprincess Member Posts: 202
    #19
    hi
    Hi,glad to hear yours went fairly decent.I always like to hear that. it gives me hope. Mine was pretty brutal- very miserable with a sick to my stomach feeling still up to today. I had to get the neulasta shot for low counts and I have had very severe debilitating bone pain from that. As far as the oxy, i have heard most people get 81-130 milligrams or something like that, and i have been getting 200. I don't know if my onc is trying to torture me or what. Hope yours continue to go well.

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