So sick

rmkbrad
rmkbrad Member Posts: 176
edited March 2014 in Head and Neck Cancer #1
I have been so sick from the Chemo, carboplatin. I have lost almost 20 pounds, the thought of eating makes me sick. I have a PEG tube so almost all of my food intake has been through the tube. 4 more weeks to go, how long does it take to get the chemo out of you system. My tongue is so sore I can hardley talk. Just whining I know.

Brad

Comments

  • delnative
    delnative Member Posts: 450
    Whine on, Brad
    We've all been there (though mine was Cisplatin). I had two rounds of chemo, and it didn't seem to stick around in my system that long, maybe a week or so. But the side-effects have been more or less permanent. Numbness in the fingertips, ringing in the ears, hearing loss ...
    But hey, I'm alive and the cancer is not. That's what counts.
    I know it's hard to whine when your tongue is sore -- you don't have thrush, do you ? -- but you've got a right to whine.
    Hang in there. Things will get worse, but then they'll get better.

    --Jim in Delaware
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    Roughing it
    Brad, you should have been provided with at least one prescription for an anti-nausea medicine, fenergin or compazine, for example. If not, you should correct that deficiency at once.

    In any event, you probably already know the answer to your question about how long it lasts: how long does it take after a chemo dose before you feel okay again?

    Generally, it is a couple of days of misery and then it is all behind you, hopefully. It is the rads that linger and they do not tend to make us nauseous.

    My chemo drug for head/neck cancer was cisplatin, and the carboplatin and taxol I later experienced for lung cancer paled by comparison. Unlike you, apparently, the carboplatin and taxol were easy on me while cisplatin did a number on me every time I had it, usually after a day of mania brought on by the steroid they included in my elixer (decadron).

    You can do something about the pain in your mouth. Often this is caused by a yeast infection called thrush, and doctors will prescribe something that is called magic mouthwash or miracle mouthwash or somesuch. It seems not much better than the thrush, to be honest (:)) as it includes lidocain which numbs the mouth, along with agents for getting rid of the infections AND a trace of something meant to make it sweet-tasting. But it is well worth it!

    Do not fret about taking in nutrition through the tube. Doing so does not make you a wimp or a failure but a realist: you are not called a survivor for nothing, and you are in survival mode, so you must do what you need to do to survive, particularly for the next few months.

    It gets better.

    And it's worth it.

    Take care,

    Joe
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    Rough times
    Got all my nutrition thru my PEG from week#2-#8, Brad. My Chemo delivery was a little different, and I got Cisplatin with the FU5, but it did take a couple weeks, for me. Keep tabs on your body temp- 101 is breakpoint= the Drs. wanna know when the 101 is reached. It do get rough, Brad, but we've all been there. I was incapable of going thru the rads in weeks #5 and #6, and spent the first four days of #6 in the hospital with Antibitoc drips and Morph. And, I returned to work a month after my last rad- the body can recover well from this. Hope and pray you will someday claim your recovery amazed you.

    Magic mouthwash helped me, bigtime.

    Believe

    kcass
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    What Joe said ...
    Brad,

    So very sorry to hear about the nausea. I am on Cisplatin, and have three prescriptions for anti-nausea meds; Emend (pre-chemo), Zofran (every 8 hours for a week after) and Compazine (every 4 hours as needed for breakthrough nausea- a scary anti-psychotic). I get another three-day anti-nausea med as a push through my hydration IV, and a 15 minute infusion of another, just prior to the Cisplatin IV. Speak to your doctors about anything else they can give you. I got Triple Mix mouthwash - Benadryl, Lidocaine and Maalox. blea, but it does numb my mouth pretty effectively. I also use the water/baking soda/salt rinse several times during the day. I'm right in the middle of infusion two of three total (week 1, week 4, and week 7). I get my cisplatin divided over a two-day infusion. No other chemo agents mixed in. Based on last time, I'm expecting this week to be pretty much a wash. I didn't have nausea, but I felt poorly for the entire week. Took anti-nausea meds through the following Saturday, and I will do that again this week. Hang in there, ask for help when you need it, and "whine" to us any time you need to. We know you aren't really whining.
  • pattyanny
    pattyanny Member Posts: 544
    Hi Brad
    Be glad you have the PEG! I refused, and got thru, but lost 28 lbs. I had thrush 4X, and used a Hydrocodone Solution - swish & spit, and it helped tremendously. Talk to your Drs. - they need to hear all complaints. You are not whining. How can they help, if they do not know HOW to help? I could not eat either, the smell of food was really gross.
    Finally, they prescribed Megace ( maybe later into your treatment ) to stimulate the appetite. OMG! I am eating like a "man"! Lol! ( thinking,"What's for lunch?, What's for dinner?") I have been eating Chili, Gyros, & bacon cheese burgers! I told my hubby to let me know if I start scratching myself! Yikes!
    Anyway Brad, it does get better, I promise! Thoughts and Prayers are with you! Patty
  • Pumakitty
    Pumakitty Member Posts: 652
    pattyanny said:

    Hi Brad
    Be glad you have the PEG! I refused, and got thru, but lost 28 lbs. I had thrush 4X, and used a Hydrocodone Solution - swish & spit, and it helped tremendously. Talk to your Drs. - they need to hear all complaints. You are not whining. How can they help, if they do not know HOW to help? I could not eat either, the smell of food was really gross.
    Finally, they prescribed Megace ( maybe later into your treatment ) to stimulate the appetite. OMG! I am eating like a "man"! Lol! ( thinking,"What's for lunch?, What's for dinner?") I have been eating Chili, Gyros, & bacon cheese burgers! I told my hubby to let me know if I start scratching myself! Yikes!
    Anyway Brad, it does get better, I promise! Thoughts and Prayers are with you! Patty

    Patty
    Patty,

    I just read your post about not having a feeding tube. How long was your treatment? I know I have read it but can not remember. What were you able to eat? I know my dad is not going to want to get a feeding tube and will be very stubborn.

    Kathy
  • Tanager75
    Tanager75 Member Posts: 89 Member
    Cisplaten
    Not much I can add to what others have said. The Emend for sickness was given the days of cisplaten. I could set my watch by my reactions, first two days not bad, worse day three, and four and five I needed to get an IV for hydration at the clinic (I put water into my system with the peg but it did not keep up for some reason). I got very weak. Today, even with the side effects described by Delnative Jim it was worth the ride. YOU CAN DO THIS TODAY AND IT WILL GET BETTER. This mantra helped me to stay in today and have hope for the future and it has been true for me.

    I'm pulling for you,
    mark
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Brad
    You will get better as soon as the treatment wares off, just sorry you have to go through this. None of us deserve it just a part of life that we all hope we never see again. We are all ears so whine on all you need we will all listen and be here for you.

    Take care
  • Barry Keith
    Barry Keith Member Posts: 11
    So sick
    Brad,
    Sorry to hear you're having a hard time with carboplatin. I went through six weeks of that along with rads and never had a problem. Talk to your doc, or in my case we had many chemo nurses and could call with any problem any time--also they had their own on site pharmacy so if prescription was needed or needed to be changed it didn't take but a few minutes...don't know what's available in your case.
    I do recall feeling like my tongue was "swollen", my last treatment was 15 March, I think I completed the time of thick mucus and am now dealing with exteme salava (drooling).
  • rmkbrad
    rmkbrad Member Posts: 176

    So sick
    Brad,
    Sorry to hear you're having a hard time with carboplatin. I went through six weeks of that along with rads and never had a problem. Talk to your doc, or in my case we had many chemo nurses and could call with any problem any time--also they had their own on site pharmacy so if prescription was needed or needed to be changed it didn't take but a few minutes...don't know what's available in your case.
    I do recall feeling like my tongue was "swollen", my last treatment was 15 March, I think I completed the time of thick mucus and am now dealing with exteme salava (drooling).

    Meds
    They have perscribed me every med they have, even the marjiuna pills. They help a little but the nasea is so strong. I have Chemo every Thursday and I feel horrable for days after, I also am getting a IV for fluids. I take in alot of fluid through my PEG tube but for some reason the IV makes me feel alot better. Thanks for the input, back to San Francisco tommorow, I hate that drive although my family is starting to drive me.

    Brad
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    rmkbrad said:

    Meds
    They have perscribed me every med they have, even the marjiuna pills. They help a little but the nasea is so strong. I have Chemo every Thursday and I feel horrable for days after, I also am getting a IV for fluids. I take in alot of fluid through my PEG tube but for some reason the IV makes me feel alot better. Thanks for the input, back to San Francisco tommorow, I hate that drive although my family is starting to drive me.

    Brad

    Meds
    Hi Brad,

    When I was taking the Cisplaten, Taxotere and 5FU they gave me Emend. I'd take a pill the day of Chemo and for the next two days. While on Carboplaten I was taking Zofran for nausea...hopefully they'll find the right mix for you soon.

    John
  • delnative
    delnative Member Posts: 450
    Skiffin16 said:

    Meds
    Hi Brad,

    When I was taking the Cisplaten, Taxotere and 5FU they gave me Emend. I'd take a pill the day of Chemo and for the next two days. While on Carboplaten I was taking Zofran for nausea...hopefully they'll find the right mix for you soon.

    John

    Thank God for Emend
    I think I only puked twice during my whole chemo regimen.
    Emend is good stuff.

    -Jim in Delaware
  • CajunEagle
    CajunEagle Member Posts: 408
    delnative said:

    Thank God for Emend
    I think I only puked twice during my whole chemo regimen.
    Emend is good stuff.

    -Jim in Delaware

    So Sick
    Does anyone remember that shot/injection in the arm that they give you when your white blood count was low ?? I called it "the Flu shot"......cause that's what it gave you for about 4 days afterward. Made me feel so sick, and was always given to me a week before the next chemo injection......the week I was to have felt better. I always raised hell with them (in a joking manner) when I was given that shot. They said they could always give me two of them. I'd then just shut up. :) Just maybe another cause of your sickness, Brad.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member

    So Sick
    Does anyone remember that shot/injection in the arm that they give you when your white blood count was low ?? I called it "the Flu shot"......cause that's what it gave you for about 4 days afterward. Made me feel so sick, and was always given to me a week before the next chemo injection......the week I was to have felt better. I always raised hell with them (in a joking manner) when I was given that shot. They said they could always give me two of them. I'd then just shut up. :) Just maybe another cause of your sickness, Brad.

    Lucky
    I was lucky with the nausea aspect- only a couple times early in the morning. Compazine held it in check (pill form). PEG and formula, only, so that mighta helped me with this complication. Maybe.

    kcass
  • fsdman
    fsdman Member Posts: 51
    Hi Brad,
    I feel for you. I

    Hi Brad,
    I feel for you. I was very sick during most of my treatment time. I puked constantly,always felt badly and suffered terrible fatigue after my cisplatin times (6).I lost 65 lbs because my tongue burned and I lost taste buds.Basically I had a harder time than most. Got dehydrated really bad and went into the hospital for a few days and got my tube.Tube saved my life.I hated every feeding but it was a way to get water in me and nutrition. I thought it wouldnt-couldnt get better-ever!! I am 1 year out now and doing great. The stage you are now at is a distant memory now as it will be for you. I got by,day to day,by knowing it would someday end.Hang inthere-I know how bad it is, talk to your docs. They have access to all kinds of help. Dont be shy.
  • pattyanny
    pattyanny Member Posts: 544
    Pumakitty said:

    Patty
    Patty,

    I just read your post about not having a feeding tube. How long was your treatment? I know I have read it but can not remember. What were you able to eat? I know my dad is not going to want to get a feeding tube and will be very stubborn.

    Kathy

    Hi Puma
    I had cysplatin & radiation a little over 3 months. I did get thru treatment pretty well. but the chemo stays with you for about 3 months. With no saliva, an increase sense of smell, metallic taste, thrush 4X, (so mouth was sore & sensitive)food was not an option. I began "therapy" at 138 lbs, and that was after eating all the foods I loved b4 I knew I would start. I lost most of my weight after I finished TX in October. I weighed 110lbs in January 2010. I, myself, would recommend a PEG tube, because at least I could have had some nutrition coming into my body. I did not get out of bed for weeks, because I had no energy to get downstairs to the kitchen. I slept a lot too. Although it is ultimately the patients decision, I have read the veteran members posts, and they got thru it easier with the much needed nutritional liquids. Have him talk to his doctor, ask questions, and get it done b4 treatment starts. Sometimes if it comes from the Dr, and not you, he may listen.
    My 1st Oncologist wanted to stop TX more than halfway thru, put in PEG tube, heal, then resume TX. I was not going to stop, when I was that close to the finish line!I found another oncologist who supported me. If Dad does refuse, be sure to consult the staff nutritionist or the American Cancer Society has one for free. Another boo boo I made - waiting till I lost my muscle mass b4 contacting one. I hope this helps, and I am not rambling. Feel free to contact me. My prayers are with you and your Dad. Stay in touch! Patty
  • rmkbrad
    rmkbrad Member Posts: 176
    fsdman said:

    Hi Brad,
    I feel for you. I

    Hi Brad,
    I feel for you. I was very sick during most of my treatment time. I puked constantly,always felt badly and suffered terrible fatigue after my cisplatin times (6).I lost 65 lbs because my tongue burned and I lost taste buds.Basically I had a harder time than most. Got dehydrated really bad and went into the hospital for a few days and got my tube.Tube saved my life.I hated every feeding but it was a way to get water in me and nutrition. I thought it wouldnt-couldnt get better-ever!! I am 1 year out now and doing great. The stage you are now at is a distant memory now as it will be for you. I got by,day to day,by knowing it would someday end.Hang inthere-I know how bad it is, talk to your docs. They have access to all kinds of help. Dont be shy.

    The worste nasea
    This week has been the worst for pukeing and fatigue, only 9 more rads to my neck and two more chemos. But since I have another tumor in my esophagus I have 25 more rads to that area but with no more chemo after the remaining two. The last two days I have been able to hold the vomiting to a minimum with several meds. I cannot beleive how tired I am, I have lost 28 pounds so far, I have it to loose thank god. Went out with the wife this morning and helped, if I can call it help plant some new trees. Movement does feel good but I am affraid to do to much.

    Brad
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    rmkbrad said:

    The worste nasea
    This week has been the worst for pukeing and fatigue, only 9 more rads to my neck and two more chemos. But since I have another tumor in my esophagus I have 25 more rads to that area but with no more chemo after the remaining two. The last two days I have been able to hold the vomiting to a minimum with several meds. I cannot beleive how tired I am, I have lost 28 pounds so far, I have it to loose thank god. Went out with the wife this morning and helped, if I can call it help plant some new trees. Movement does feel good but I am affraid to do to much.

    Brad

    Nutrition
    Sorry to hear of the nausea problems continuing, Brad. Thing is- you gotta keep trying to get as much nutrition into you via the PEG, as is possible. Know the formula is a problem for you- but you gotta do the nausea meds and get all the nutrition you can, as you know.
    Rough road, my friend.

    Believe

    kcass
  • rmkbrad
    rmkbrad Member Posts: 176
    Kent Cass said:

    Nutrition
    Sorry to hear of the nausea problems continuing, Brad. Thing is- you gotta keep trying to get as much nutrition into you via the PEG, as is possible. Know the formula is a problem for you- but you gotta do the nausea meds and get all the nutrition you can, as you know.
    Rough road, my friend.

    Believe

    kcass

    Calories
    I am getting an average of 1500 calories a day, I continue to take the meds but can keep them down only about half of the time. When I drink the water to wash them down up comes everything. I knew it was going to be a rough road, my sons asked me why my hair was falling out yesterday, I guess it is time for the buzz cut this week. Thanks for all the input,


    brad
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    So Sick
    Does anyone remember that shot/injection in the arm that they give you when your white blood count was low ?? I called it "the Flu shot"......cause that's what it gave you for about 4 days afterward. Made me feel so sick, and was always given to me a week before the next chemo injection......the week I was to have felt better. I always raised hell with them (in a joking manner) when I was given that shot. They said they could always give me two of them. I'd then just shut up. :) Just maybe another cause of your sickness, Brad.

    Neulasta
    CajunEagle, for me that shot came the next week after Chemo. It only effected me the first time (out 0f three). I remember working at the desk, it was either Wednesday or late Tuesday (after receiving that shot on Monday). It felt like my back went out. Then like you said, all of my bones ached, especially the larger bones.

    I was lucky though, it was only the first one that did that. Like you said, it felt very similar to the flu...

    John