Lack of appetite 9 months post treatment

Options
Nancy24
Nancy24 Member Posts: 72 Member

Last summer my husband had 35 proton radiation treatments and 7 Cisplatin for HPV+ oropharyngeal cancer. This forum was extremely helpful for me during that time. The very good news is that he is NED. The not so great news is that he lost 30 pounds and really couldn't afford to lose most of it. He never had a PEG. He started eating "real food" one month after his last treatment. He is now 9 months post-treatment and can eat almost anything. Still has dry mouth but he has learned to drink water while eating. 

Anyway, during tonight's dinner he mentioned that he is almost never hungry. Did anyone else experience this?  Any suggestions for an appetite stimulant?  FYI we are not in a state that has legalized medical marijuana. And yes, he should ask his doctor about this but of course he has never mentioned it during his regular appointments. I think I've convinced him to contact his doctor but in the meantime I thought I'd ask the real experts. 

Nancy

Comments

  • soonermom
    soonermom Member Posts: 155
    edited June 2017 #2
    Options
    My husband is not that far

    My husband is not that far out of treatment but he never, ever, ever experiences hunger anymore.  We tried Marinol to increase his appetite.  No impact for him.  He is not a candidate for the other appetite stimulants.  It makes the return to eating very difficult.  Good luck with your journey.  Sadly, I do not know what the answer is.  I don't think my husband would eat at all if he wasn't on a schedule.  

  • Nancy24
    Nancy24 Member Posts: 72 Member
    edited June 2017 #3
    Options
    soonermom said:

    My husband is not that far

    My husband is not that far out of treatment but he never, ever, ever experiences hunger anymore.  We tried Marinol to increase his appetite.  No impact for him.  He is not a candidate for the other appetite stimulants.  It makes the return to eating very difficult.  Good luck with your journey.  Sadly, I do not know what the answer is.  I don't think my husband would eat at all if he wasn't on a schedule.  

    Thanks

    Thanks for your reply. I figured this wouldn't be a unique problem. I did forget to mention that he isn't experiencing any nausea..just lack of appetite. Did your doctor suggest Megace (Megestrol)?

  • Kapital
    Kapital Member Posts: 52 Member
    Options
    appetite

    My husband was treated for stage IV tonsil cancer 2 years ago. For at least 6 montsh after treatment he ate because he knew he should. He didn't have any appetite, very little saliva and nothing tasted good.He would weigh himself everyday to make sure he was getting enough calories and not continue to lose weight.  But, very, very slowly, he started to regain his appetite, his saliva began to return and things started to taste better. Now, two years later, his saliva is about 70% of what it was. The back of his throat still feels drier. Sips of water during the day, sugarless gum and Xylimelts at night help. Taste has not recovered quite as much. He figures he has 50% of his former taste. But, he does enjoy most foods now. Things don't taste the same, but they don't taste bad, like they did right after treatment. Both of these things have helped with appetite. When everything is dry, hard to swallow and tastes bad it's hard to work up an appetite. His appetite slowly improved, as taste and saliva did, after the initial 6 months or so. It was well over a year before I ever heard my husband actually say he was hungry. He didn't take any medications to improve his appetite, time continues to be the real treatment for him. Best of luck.

  • phrannie51
    phrannie51 Member Posts: 4,716
    Options
    It took 3 years for my appetite to

    return....I'd get hungry, but it took darn little to fill me up.  I'm still 4 lbs under what I started treatment at, 5 years ago.  No saliva, and hit and miss tastebuddies, don't do much for the eating experience... :).  Taste fatigue is when the first bite tastes wonderful and the 3rd bite tastes like nothing, excitement gone, and eating is purely functional.  My tasters came back, almost overnight.....at 3 years out of treatment, and I put away way more food than before.  His tastebuds might be like mine....late bloomers...and still waiting to make their comeback.

  • Nancy24
    Nancy24 Member Posts: 72 Member
    Options
    Taste and appetite

    Thanks for your replies. Most of his taste has returned and many things taste normal to him. But even when he's eating something that tastes yummy to him, he still doesn't have an appetite. He rarely feels hungry. In spite of this, he has managed to gain back five pounds. 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited June 2017 #7
    Options
    Takes time, not Mary Jane

    Hi Nancy,

    Taste, feel (texture), appetite can remain unpredictable for a long time. Mine were on the fritz for 7 months, until overnight everything changed and I was welcome back to the table.  I thought it was very interesting the way I wasn’t hungry, but I was happy and satisfied.  I have since proven that time to be temporary as I am back “appetite ready” with my new normal taste buds and everything to eat.

    Matt

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    Options
    Five months post here.  Now

    Five months post here.  Now have full range of tastes, with some unpredictable drymouth.  Marijuna worked better for my daughter than it did for me (no, she did not have cancer).  We're in Colorado so it's stocked (by her) in my med cabinet.  I am starting to experience appitite, but it's not motivating - it doesn't drive me to the kitchen.  I can eat most things, but alcohol, and any salsa past mild is out.  That is sad, because I have a lovingly assembled wine cellar. 

    My diet is mostly driven by an awareness that if I don't get in at least 2,500 calories a day I will start paying with a health downturn in about 3 days.  That's empirical, based on direct observation back early in month four.   So, I count calories, and drink the dreaded nutition shake at bed time if I'm going to be under.  I lost +40 lbs during treatment and was determined I was not going to gain it back.  That turned out to be a dumb idea.

  • soonermom
    soonermom Member Posts: 155
    Options
    Megace

    We discussed it but he was not a candidate because it was contrindicated with some other meds/medical issues he has unrelated to the cancer.  

  • Dennis from Kansas
    Dennis from Kansas Member Posts: 46
    Options
    No Hunger No appetite

    I have been so worried about not being hungry,or not haveing a appetite Ive made myself sick.I went to my regular doctor yesterday and she subscibed me marinol.When i went to get it I could not afford it as it was almost 300 dollars.From what i read it would be throwing my money away and it sounds like time is what its going to take.I have learned so much from all the responces ,I just need to put the information to work.Thanks to everyone for thier input as exsperence is more informative.         Dennis 

  • dw195
    dw195 Member Posts: 43 Member
    Options
    Hunger

    Hi Nancy,
    I do get hungry but eating is still such a chore that I'm still primarily on Ensure and cereals. My taste is mostly back but things taste different and I have almost no saliva. So while eating is not appealing I do get hungry, I still think proton treatment was the way to go. I'm 3 months post treatment now.

    Don

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    Options
    7 months out

    I am 7 months out of treatment and still have a heck of time finding edible foods. Steak medium rare and eggs are 90% of my meal plan. I can do steamed veggies every now and then. Absolutely no fruit. I was an exercise buff and fruit and nuts were my main stays. I am still searching for the new normal. And I don't like it so far. So tired of milk and water. I was offered the weed pills but since I work in health care and can have a random test at anytime I chose not to try it. I actually got up one morning about 3 months out and swooped all my pills and potions into the garbage and have been feeling better ever since. Yes eating is still a challenge but its all worth the ride in the big picture.