Chemo Sux

Phoenix_66
Phoenix_66 Member Posts: 118
in Colorectal Cancer #1

After 11 years battling this mess, you would think that my body would be accustomed to the chemo by now but nope.  It seems like each new episode with chemo is affecting my body more and more.  I wonder how long it will be before I cannot tolerate it at all.  I had almost forgot how crappy this stuff makes me feel but hopefull after the 5FU pump comes off today things will start to improve.  Has anyone had success with something to help the awful waxy taste in your mouth during and after Folfox treatments?  I am just finishing my first new Folfox + Cyramza treatment and the side effects of mild nasea and just feeling plain icky started immediately.

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Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #2
    Dry Cheerios

    I lived on those for a day or two after chemo. 

    Chances are you will have to try several different things, as we all have different tastes.  

    Land yes, chemo sucks, but you've made it through before, and know you can do it again. 

    Tru

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    #3
    Melatonin

    It may not help with the taste, but there is some indication that melatonin at night may help with the side effects.  https://www.ncbi.nlm.nih.gov/pubmed/22271210

  • plsletitrain
    plsletitrain Member Posts: 252 Member
    #4
    Waxy taste in the mouth

    I call that the metallic taste in the mouth.  I hate it too.  It makes me lose appetite.  What I do is I force myself to eat, even just a little.  It goes away after 3 days anyway (in my case).  So on these 3 days I eat less but eat once in awhile just so my stomach will have something.  It really sucks indeed.  I still have 6 more oxaliplatin infusions and I just can't wait for that to be over.  

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #5
    Hope

    Chemo will be replaced by more sensible treatments in near future.

    Phoenix, you can do it again!

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #6
    Trubrit said:

    Dry Cheerios

    I lived on those for a day or two after chemo. 

    Chances are you will have to try several different things, as we all have different tastes.  

    Land yes, chemo sucks, but you've made it through before, and know you can do it again. 

    Tru

    Had not thought of that. 

    Had not thought of that.  Thanks Tru I will give those a try.  This time seems to be affecting me more mentally.  I've had to scold myself to quit feeling sorry for myself and to suck it up but for some reason it is harder this time.

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #7
    MyJourneywithCancer said:

    Hope

    Chemo will be replaced by more sensible treatments in near future.

    Phoenix, you can do it again!

    I actually saw a news bit the

    I actually saw a news bit the other day about some very promising genetic treatments that were being tested on all types of cancer right now.  The story was about adding antibodies to the patients blood and using that as a target injection into the tumor.  According to the news, this would eliminate the chemo side effects and is having pretty good results but mostly with luekemia tests.

  • EissetB
    EissetB Member Posts: 133
    edited July 2017 #8
    Side effects on chemo

    Chemo is TOXIN and we all know the fact. My side effects are most likely as yours. But of course it appears many more side effects on me as the chemo goes on. Some days are good, some days are awful bad...and I have no choice but accept it will only happens for a few more months then back to normal days when we'll be able to move around as normal person once again. God bless us all <3

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #9
    I don't emember a waxy or

    I don't emember a waxy or metallic taste. Maybe I've just forgotten. It's been a couple of years since the 5FU or the FolFox. I'm having low level nausea right now with the Xeloda. It's not terrible, just makes me feel genarally crappy and not wanting food at all. I have to eat things like soda crackers with a bit of butter on them to get me through tha bad days. I take an anti-nauseant but it only helps a bit. The hard part is that if I eat more I feel better after. It's the making myself eat that's difficult. I've tried describing it as when I see a commercial for food like burgers or something, instead of it making me think 'mmm' I'm thinking 'bleh' and don't even want to look at it. It's  a crappy feeling. I hope you feel better soon.

    Jan 

  • mozart13
    mozart13 Member Posts: 118
    #10
    No taste

    no sensation, no taste in mouth, watermellon is my new friend, keeps me  hydrated, on Tuesday I start my folfox, on Thursday 5fu gets disconected,Friday I find toughest day, usually sleep all day, no energy, runing out of breath, numbness in fingers, toes, 24 hours after chemo is disconected I start injections of grastofil, to boost bone marrow production.

    Saturday is another story, alerady feel recovery, just finished my 6th folfox, 4 more to go, 8 is must as per some studies.

    Good luck to you, hang in there, its not easy.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    #11
    JanJan63 said:

    I don't emember a waxy or

    I don't emember a waxy or metallic taste. Maybe I've just forgotten. It's been a couple of years since the 5FU or the FolFox. I'm having low level nausea right now with the Xeloda. It's not terrible, just makes me feel genarally crappy and not wanting food at all. I have to eat things like soda crackers with a bit of butter on them to get me through tha bad days. I take an anti-nauseant but it only helps a bit. The hard part is that if I eat more I feel better after. It's the making myself eat that's difficult. I've tried describing it as when I see a commercial for food like burgers or something, instead of it making me think 'mmm' I'm thinking 'bleh' and don't even want to look at it. It's  a crappy feeling. I hope you feel better soon.

    Jan 

    Xeloda/capecitabine

    Jan:  I agree that the Xeloda/capecitabine side effects are more subtle and creep up on you.  I have the same feeling about food, it is not nauseating, it is just not attractive and I have to force myself to eat.

  • PamRav
    PamRav Member Posts: 348 Member
    #12
    Potato chips.

     

    Seriously,  potato chips (plain, kettle cooked ) in small amounts help with my chemo nausea.  Have no idea why, maybe the salt??  Then I move up to real home made mashed potatoes for a few days.  No idea why, but it's what I crave and it works for me!

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #13
    JanJan63 said:

    I don't emember a waxy or

    I don't emember a waxy or metallic taste. Maybe I've just forgotten. It's been a couple of years since the 5FU or the FolFox. I'm having low level nausea right now with the Xeloda. It's not terrible, just makes me feel genarally crappy and not wanting food at all. I have to eat things like soda crackers with a bit of butter on them to get me through tha bad days. I take an anti-nauseant but it only helps a bit. The hard part is that if I eat more I feel better after. It's the making myself eat that's difficult. I've tried describing it as when I see a commercial for food like burgers or something, instead of it making me think 'mmm' I'm thinking 'bleh' and don't even want to look at it. It's  a crappy feeling. I hope you feel better soon.

    Jan 

    Jan, it is hard to explain

    Jan, it is hard to explain what I experience in my mouth on this treatment.  To me it seems waxy but I guess you could call it metallic.  Mainly my tongue gets coated with the chemo and nothing has a taste.  It doesn't matter if its water or something to eat...it all tastes the same.  I got sick for the first time this morning.  I really hate how this stuff makes me feel.  What I don't understand is that with all the brilliant people in this world especially with how fast technology advances, why can't the researchers find something to fix this without having to poison our bodies.  I apologize for the negative thread and I don't mean to sound so "poor pity me" but maybe one day I will understand.

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #14
    mozart13 said:

    No taste

    no sensation, no taste in mouth, watermellon is my new friend, keeps me  hydrated, on Tuesday I start my folfox, on Thursday 5fu gets disconected,Friday I find toughest day, usually sleep all day, no energy, runing out of breath, numbness in fingers, toes, 24 hours after chemo is disconected I start injections of grastofil, to boost bone marrow production.

    Saturday is another story, alerady feel recovery, just finished my 6th folfox, 4 more to go, 8 is must as per some studies.

    Good luck to you, hang in there, its not easy.

    I may try the watermelon. 

    I may try the watermelon.  Tru gave me the idea of dry cheerios and while they don't have any taste, I can tolerate them.  Maybe some fruit will help too.  Thanks.

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #15
    PamRav said:

    Potato chips.

     

    Seriously,  potato chips (plain, kettle cooked ) in small amounts help with my chemo nausea.  Have no idea why, maybe the salt??  Then I move up to real home made mashed potatoes for a few days.  No idea why, but it's what I crave and it works for me!

    This will probably sound

    This will probably sound weird but I did eat a few Frito Corn Chips yesterday and they seemed to be okay.

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #16
    I tell you, one of the

    I tell you, one of the biggest issues I am having right now is a lot of dried blood in my nasal cavity.  I have experienced this during all the treatments to date but it makes everything smell coppery which doesn't help.

  • PamRav
    PamRav Member Posts: 348 Member
    #17
    Trubrit

    OH YES!

  • NewHere
    NewHere Member Posts: 1,428 Member
    #18
    Ginger Snaps For Me

    On my chemo (while on the pump and then for a day or so after), room temperture Fresca and Ginger Snaps.  I did not really have nausea during all of it, but was never really hungry and those had the most normal taste.  Was weird how Fresca tasted normal during chemo and also after another surgery I had that messed up my sense of taste for months.  In that case everything tasted horrific.  Even things I love.  But Fresca was fine.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited July 2017 #19
    Phoenix_66 said:

    Jan, it is hard to explain

    Jan, it is hard to explain what I experience in my mouth on this treatment.  To me it seems waxy but I guess you could call it metallic.  Mainly my tongue gets coated with the chemo and nothing has a taste.  It doesn't matter if its water or something to eat...it all tastes the same.  I got sick for the first time this morning.  I really hate how this stuff makes me feel.  What I don't understand is that with all the brilliant people in this world especially with how fast technology advances, why can't the researchers find something to fix this without having to poison our bodies.  I apologize for the negative thread and I don't mean to sound so "poor pity me" but maybe one day I will understand.

    Please never apologise for

    Please never apologise for a negative thread. There's nothing positive about cancer unless its beating it or being NED. And whatever we're dealing with at the time is what's foremost for us at that moment. Right now I'm on Xeloda and I feel fairly crappy. Not enough to be miserable but enough for it to be ruining my summer. The Xeloda doesn't seem to be working particularly well for me and my onc has suggested I try the Vectibix again starting at 50% dose because they'd done a test on my tumour and it's supposed to be one that will work against it. But I had a terrible reaction to it in February and I'm scared. So feeling kind of crappy all the time with a chemo that's only marginally working or possibly having my face go 'toxic' as my onc put it. Hmm, which one...

    My point is that it's all crappy. Bad tastes, nausea, fatigue, rashes, neuropathy, hair loss, whatever you're dealing with at the time is what is going to be your focus. I remember the FolFox causing things to taste odd, that's probably what you're talking about. It basically just changed the way things tasted and made them taste yucky. Plus the neuropathy. The oxypalatin really sucks as a chemo additive.

    And I agree, with all the money thrown at cancer research and all the brilliant minds trying to come up with cures, why hasn't a single cancer become easier to treat? I realize that they're all different and that what works in a lab doesn't necessarily work in real life, and what works on a mouse or other lab animal doesn't transer to people, and trials means someone won't make it of they have to have the placebo, and the problem is getting whatever is working to actually deal with just the chemo because it doesn't recognise the cancer cells any more than our bodies do, but still. This is just taking too long. I believe that we'll find a bacteria, virus, or something along those lines that will do the job. Until then, what's taking so damn long? And once they find something, why does Canada take SO much longer to approve treatments??

    Sorry for the long answer!

    Jan 

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #20
    Trubrit said:

    Nose bleeds

    The chemo dries up your mucus membrains, alas, nose bleeds.  I had them also. I used to pick out the hugest blood boogers ever. They felt like concrete blocks up my nose, and would not blow out; thus I resorted to picking. YUK! 

    Tru

    I agree, it is nasty.  Of

    I agree, it is nasty.  Of course, almost all of this is nasty.  LOL

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #21
    Nose bleeds

    The chemo dries up your mucus membrains, alas, nose bleeds.  I had them also. I used to pick out the hugest blood boogers ever. They felt like concrete blocks up my nose, and would not blow out; thus I resorted to picking. YUK! 

    Tru

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