i hate this

Goyca
Goyca Member Posts: 220
in Head and Neck Cancer #1

Hello all, I know you all got things to worry about. But I need to let things out of my system!

I have finished my 8th rads session today. I'm feeling weird, nausea is killing me and the weird constant taste & breath like metal or something like that. Starting to loose interest in food, but I'm trying to eat 2 times a day, but the quantities are being very small. I feel weird and sad, I'm worried about the eating part. When I told my Dr about it, he said its not supposed to be that bad (the taste issue) cz my mouth is not in the field, only my upper palette is.... , what I know I hate this and I'm starting to feel down :(

 

wish u all well, and a painless day.

Goyca.  

Comments

  • CherieLW
    CherieLW Member Posts: 472
    #2
    Goyca, 
    While I haven't had

    Goyca, 

    While I haven't had to go through this, my dad who I am very close to did.  I was also worried for him about the things you worry about and those are valid reasons to be scared and down.  Please try to stay positive!  I know it's hard, but my dad tried his best and bc of it... he has made it through! Around the same time as you he lost interest in food.  I was very scared bc he had to get a PEG tube, but in reality it was a life saver!!!  Hopefully you can avoid this, but I think losing taste so fast is common.  IF you do have to get a peg, my dad said it did not hurt really and neither did the removal he had just after a year. I hate hearing that people cannot enjoy food, but I know there are things 8 months out of treatment my dad started to enjoy.  Some things still aren't up to par...but hopefully it will get there!  Praying for you!  Keep your head up!

    Cherie

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #3
    We are all different

     

    This journey is not fun but doable.  We are all different and react differently to treatment.  I remember leaving radiation the first day having a different taste in my mouth.  Much earlier than I had been warned.  You need to eat, it doesn't mean that you will enjoy it.  I lived on Smoothies and cream of wheat.  You might check out (or have someone else help) Rebecca Katz cookbooks.  She has worked with cancer patients and seems to 'get it' about our side effects.  Her recipes are like science for H & N patients.   

  • corleone
    corleone Member Posts: 312 Member
    #4
    My question is if you have

    My question is if you have concurrent chemo, or “only” radiation. I take that you only have radiation treatment. In my case I had both, so things are difficult to interpret/compare. I would say though that I started to have a low grade nausea from Day 1 of radiation, constant during the treatment (of course, exacerbated during chemo sessions). I started to lose taste at the beginning of 3rd week. It didn’t go south all of a sudden, it was more like altered taste, which went from bad to worse until the first couple of weeks post radiation. I didn’t have that metallic taste, but many others did. Besides nausea, ageusia (lack of taste) was the worst thing, as I used to enjoy eating very much. Now, 1y 9m post treatment I enjoy eating quite a bit, to the point that I have to refrain from eating everything I can or like, to avoid gaining more unwanted weight.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    Hi Goyca

     

    Yes it is a little early for you to lose the taste but we are all different. The metal taste you will get use to after a while and will not bother you anymore, that is how it was with me.  Also if your throat is already starting to show signs get you doctor to order a PEG tube. It is not all that bad, I been living on one for the two years you can do a few months with no problems.

     

    Take care

    Tim Hondo

  • donfoo
    donfoo Member Posts: 1,773 Member
    #6
    about right...

    Hiya,

    Rads are a drag but you will get through it. We all do, some skipping along, most dragging our butts, and some being dragged across the finish line. Depending on the day of the week you started, if you are nearly two weeks into rads, this is the common point where side effects start kicking in. My motto is as always NUTRITION -- HYDRATION -- PAIN MANAGEMENT. Do those three things right and you will roll on to the finish line and through recovery. Good luck, Don

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #7
    goyca, hang in there, it will

    goyca, hang in there, it will get better but unfortunately, what you are experienceing is to be expected.  do you have a metal taste in your mouth all the time or only when you eat?  if its only when you eat, try using plastic silverware instead of metal.  others did this and it made a difference.  we are here for you.  listen, listen really hard, can you us?  we're here on the sidelines cheering you on!  go goyca, go goyca!!  we are your family in this fight and we will always be here for you.  and goyca, we all have things to worry about like you said, but that is why WE COME HERE!  becasue we are worried or want to help someone who is.  you get it out of your system anytime you need to.  that's the joy of having a huge family like us. 

    God bless you,

    dj

  • topcat100
    topcat100 Member Posts: 19
    #8
    when i started rad for

    when i started rad for parotid gland i lost taste 4 weeks in i struggled with eating and weight i lived as much as it hurt to drink and with no tast off ensure drinks full immune muscle and nutrion then i had to wash it down immediately with water i had no taste of food from week 4 to week 7 i lost 20 pounds you have to just do it g or get a feeding tube you know it sucks and you can get through it force yourself to drink those drinks and with or without taste of food like me you have to try to eat or drink something i was in the same boat i sstarted getting my tast back 2 weeks alittle after treatment and i had chemo and rad to my saliva gland and neck i have constant dry mouth have to have water by my side and dry mouth it sucks but if i make it its a trade off i chew sugerless gum alot of it to help for saliva your cicumstances are different but youve got to try and drink those drinks orr eat alittle bird food if that all it is the taste there is no taste but better than a tube unless you have to have it please fight like i did and dont give up im still wondering if my treatment is gonna work dont lay down g god bless us all

  • wmc
    wmc Member Posts: 1,804
    #9
    I need to let things out of my system.....

    Yes and that's why you are here, to get support. From what I can tell [I never had RAD Or Chemo] you are like those that have had it. They will all help with answers. The PEG would help with the not wanting food. Just know i'm on the sidelines cheering you on.....you can do this, you're stronger than you think. Coming here to get it out and put in words was the best thing you could have done. Your in our prayers.  :]

  • Goyca
    Goyca Member Posts: 220
    #10
    Guys ur support is a

    Guys ur support is a blessing.

    I'm not having chemo only imrt/rads. The taste is constant even if I'm not eating, but when I eat its worse, and nausea most of the time unless its all the time. I'm planning to fight and prevent having a tube.so today I'm gona talk to my Dr. About this taste issue .

    so I get from what u guys said that fluids are the best"? But does it replace food?

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #11
    feel better mentally

    Goyca,

    When the taste and feel of food went south, I switched to liquids (mainly and gladly).  Now days my taste isn’t great, but my appetite is.

    Manage nutrition and drink water and swallow often and learn what works best for you in this fight.  This isn’t a normal battle you are in, it is a game of chess.

    Matt

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #12
    I'm so sorry!

    I'm so sorry that you're going through this.  I lost my taste after only the first week of treatments.  Gone.  Nothing.  Then the thick saliva kicked it and made it impossible to eat anything and keep it down.  I was so down by my last week of rads that I was ready to just quit.  This wonderful famiy on here encouraged me and gave me a much needed kick in the rear to finish.  I had to get a PEG and was terrified.  I can honestly tell you that it was no big deal to get it in or have it removed.  That darn thing saved my life!  I did continue to sip water each day, but the constant weight loss gave me no other option.  I am praying for you, my friend, and hope that things get better.  It's such a nasty treatment but I promise it does end and things improve.  I think back to just a year ago and I'm amazed at how happy I am now and how beautiful life is.  I hope for only good things ahead for you as well.  Always use plastic utensils and that helps with the metal taste! I carried some around with me if we went out to eat anywhere and I still prefer plastic :)

  • phrannie51
    phrannie51 Member Posts: 4,716
    #13
    One of the constants of living before

    cancer is we all love to eat....I mean REALLY love it.  We know that we get nutrition via an exciting venue....we live to eat!!....it's that much of an enjoyment.  Once we've been struck by the beast, we have to move over and view eating through a different peephole....the one marked "eat to live".  When my taste was in the process of leaving, I didn't have metal taste.....I had salty taste.   Everything tasted as tho someone had dumped a shaker of salt on things....yuuk.  I knew that wasn't true, but again YUCK! 

    I weighed 97 lbs when I started, so went into treatment with a healthy fear of being cured of cancer but starving to death.  I powered through the gawd awful taste (even water tasted like swampy salt water).....chances are this is a phase on your way to no taste at all....If I remember right....by the end of 14 days nothing had a taste whatsoever...that's when we move into the carboard/plaster phase :).

    You can get through this period.....mind set yourself that this bottle of Ensure is going down.  Longtermsurvivor taught me a trick to help get it down.  Count how many swallows it takes to get one 8 oz thing of Boost or Ensure down.  That way when you're about to drink one, you mind is set "I have to swallow 13 times and this meal will be over".....It helped me get it down.  Keep in mind it is probably a phase.....so you only have to get it down today....tomorrow might be entirely different.

    YOU CAN DO IT!!!  GO GO GOYCA!! (I'm your cheerleader!! LOL).  Remember this is temporary!!!

    p

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