First PET scan is clear

Whew! we dogged a bullet.. I am so happy to feel like we can live a little again, and not be stuck in the tunnel of fear/wondering. I will ensure my hubby works on his nutrition over the next few months, since we no longer have to worry if the treatments did their job at this point. Eating is still not his favorite subject, however I really need him to be on board with it.. Not sure why its so hard to eat.. I know this is something everyone faces..If it were me I would shovel food in, just to do it..He says its much harder than I am suggesting. Lets see what he does, and if he isnt able to do on his own.. Then I will need to be a bit more forceful. I have backed off from doing so, since I didnt think it was very fair of me, to give him a hard time about anything, when hes down and out..But.... if hes getting better, then I will push a bit more. Does everyone out there have this horrible aversion to food?  Blessed with good news, I will keep this happy moment with me for a while, I havet had this feeling in so long. It's Snoopy Dance Time.. xoxo to you all.. K~


  • Bunnymom
    Bunnymom Member Posts: 212 Member
    First, congratulations on


    First, congratulations on a first NED (no evidence of disease). This is great news!

    No, or low appetite is a side effect of treatment. Additionally, your husband may have mouth sores from treatment. The sores can not only be in the mouth but down the throat. If this is the case, it is extremely hard to eat because it is very painful. This will subside as he begins to heal. It may take at least a month or so for this to happen. It's probably not because he doesn't want to eat, but because its hard to eat. You might want to try high protein nutritional shakes like ENU or soft foods. It's very important that he gets protein as that will help with healing.

    Keep encouraging him. I remember when my sister was really giving me a hard time because I didn't want to eat. She just told me yesterday that if looks could kill....that was my response to her. LOL. Just try to encourage with understanding. It will all come but as I am learning, it takes a long time to recover.

    I think it's hard for others to understand what our bodies have been through. 


    P.S. Hows the orthostatic hypotension coming?

  • phrannie51
    phrannie51 Member Posts: 4,716
    Whoo Hoo!!

    You have met Mr. NED, and that is a big hump to get over....hope you both did a happy jig around the kitchen table!

    I didn't have an aversion to food....I was starving by the end of treatment (my stomach was, anyway).  My mouth wasn't as cooperative.  Anything acidy or spicy saliva made it so only soups and very wet food was comfortable to eat....and of course, the lack of taste seemed to ensure that I'd eat half and leave the rest for later.  One thing I did learn tho...the blander the better.....the more I could taste what I was eating.  Veggies have more taste than fruit....lots of butter make them go down easy.  I ate a lot of brocolli and cheese soup, and I'd soak French bread slathered in butter in it...Shrimp salad...the kind made with macaroni and lots of dressing was also good to me....I could taste onions and they didn't sting.  My very first REAL meal where I could actually taste something was a Chinese many choices of food, lots of sauces....and I could surprise my buds every two bites.

    Much of what I loved before treatment I don't care for any longer (fruit)....and things I wasn't crazy about I do love now (like veggies)....I still eat a lot of soup, and make homemade often.  For months after treatment I could only eat a small amount at a time...and gaining weight wasn't in the cards, tho my strength increased substantially. 

    These are just ideas....he might decide to start pushing himself now that he's got the great news on his scan....fear always cuts my appetite down to nothing.


  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    NED and eating


    Congratulations on the scan results (first NED).

    As for food, it isn’t too big a deal how as long as he gets all the proper nutrition and hydration and his swallowing is ok.

    I was one of those who had a terrible aversion to taste and texture of most foods (not all).  I was sampling foods all the time and I tried virtually all the H&N suggestions, but to no avail.  I once put a can of Crisco on my parents table (when they wanted me to eat normally) and said “this is what eating is like”.

    I had a few successes (corn, tomatoes and olive oil, ice tea), but mainly lived happily on smoothies and protein drinks for 7 MONTHS.  I had a little igloo cooler I took with me everywhere. Many times my wife or boss would eat a burger while I had a protein drink.

    Then one day I was faced with no cooler, no drinks and I had to order lunch.  I had a turkey sandwich and surprise, surprise it tasted and felt fine. It was just like a switch was turned back on.

    I now eat normally, be it with lots to drink.  You just need to find what works and be happy.

    Matt’s Story

  • MrsBD
    MrsBD Member Posts: 615 Member
    What great news! Another

    What great news! Another member has heard the magical word NED. The healing phase is a long one, so keep inspiring your husband, not pushing. We eat with our eyes and nose as well as our taste buds, so possibly savory smells and colorful food will appeal to him. At 5 months post-treatment, food still is take it or leave it for me, but I can eat and am maintaining my weight. Earlier though, it just took too much work to eat and everything hurt or burned. It gets better slowly, but it does get better.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    congrats on the wonderul

    congrats on the wonderul news.  I, too, am doing the snoopy happy dance.  we love to celebrate here!  about the eating, my caregiver was hard on me b/c i had no desire to eat because it was just too hard, didn't taste good and it took way too long to chew.  it took me about 1.5 yrs to really start to eat and longer than that before i ate a full amount of food.  i know this is very hard for the caregivers to understand but this is also one of the side effects from tx.  continue to encourage him to eat but please don't get frustrated with him.  it is hard on us when we want to eat but can't too.

    God bless you both.


  • wmc
    wmc Member Posts: 1,804
    Congratulations .... NED

    It wasn't that long ago that you never heard  NED (no evidence of disease). Now it can be the sweetest word you hear, until you reach five and hear CURED. That will come as well. You both went down that bumppy road, but you made it and can now see the light. Celabrate all the accomplishments he makes. Some may seen small to ones that never went down the road, but to the ones who did, they are all major. Now instead of one day at a time, you can now see the tomorrows in your future. It is still a slow process, but you won. We will still keep you in our prayers, and please keep us updated.


  • avisemi
    avisemi Member Posts: 172
    Congrats!  We are praying for

    Congrats!  We are praying for the same result in 2 months. My husband isn't eating much either. We saw the doctor today and he said to replace all boost VHC with real food within the month.  To aim to drink 1 less boost a week and replace it with real food. We are going to try but I know eating is still very painful. We are looking for things he could eat. so far, oatmeal and hard eggs are the best options. Good luck!

  • scarytimes
    scarytimes Member Posts: 16

    I'm so happy to hear your first scan was clear! We have ours - or more truthfully, my brother has his on March 16th. Saw the ENT as he see's no sign of that nasty big tumor so we are hopeful.

    As for food....Bob got his tube out last week while at the ENT. He's been eating by mouth for several weeks. But all of a sudden he can't stand the smell of food!! He is the cook at his house and was advised to stop cooking. Don't even be in the house when it's cooking- then he's OK. But it's been a battle.

    Lots of emotions going on, highs and lows. We are praying for the best.

    The day after his pet our Mom will get hers read..last week they found a mass in her lung. So it continues and we fight on.

    Have you tried chinese food? Others on here posted it and it was the very first thing Bob could taste and swallow easy enough.

    Take good care- both of you!!!


  • Super-b
    Super-b Member Posts: 26
    Point of view

    I am going to give an opinion from perhaps your husbands point of view.

    Before my treatment I was a bit of a foodie and my waist line kinda showed it. About 3 weeks into treatment I had lost all taste and the desire to eat....flat out was not hungry at all...had 0 intrest in food other than whatching the food network planning on a post recovery trip across the country hitting every Diner, Drive-in and Dive I could. Frankly there was nothing my wife could say or do to get me to eat...and beleave me she knows how to get what she wants (supervises about 70 men in the construction field). The harder she pushed the more I dug in my heels.

    What worked best on my was her just putting a small plate of soft food or soup or a shake beside me...nothing said. I just started to eat what I could (small bits and bites) just becouse she made it for me.

    I still lost oodles of weight (back to highschool weight) but no feeding tube.

    Sometimes a soft nudge works better than a big shove :)

    Bood luck with everything


    p.s I am 8 months post treatment and do eat most things...but still can not taste most.

  • Duggie88
    Duggie88 Member Posts: 760 Member
    Dance up a storm

    I remember my first all clear like it was yesterday. One of the best feelings I ever had after the hardest fight I ever had to put up.

    Eating can be a real challenge, most foods tasted like metal and salty. The power of suggestion goes a long way. In other words don't force him but rather suggest he does something. He will realize that a certain food that tasted crappy yesterday ain't so bad today. It gets better every day over a long period of time.


  • stayingpositive
    stayingpositive Member Posts: 89
    Congrats on the NED!!!! The

    Congrats on the NED!!!! The road is now downhill, remember to "lean into the curves", it will make them more interesting!

    No really, take this as just one of the challenges you two will face and surpass.

    It took me one year to get my aversion to food past me, it took about 16 months before I started to "taste" food.

    I lost 60lbs...went from 184lbs down to 124lbs, at that time my doctor told me to put on weight or your body will start having problems.

    I went to a GNC center and they gave me a few trial packs of "muscle mass" and told me to disolve it in warm milk.... at the time I was starting ot get some taste back and the richness of it gave me a bit of a "holey moley I can taste again" reaction.

    Foods to him now are probably all the same and taste like cardboard and dry.... if he can swallow normally it is a good thing.... try few tart or spicey things to see if he can "taste" them.

    If he can taste.... but doesn't want to eat (like me, except i couldn't taste), i would suggest a routine of some sort, like sit down with him and talk and eat, I learned that a little late (wife started eating with me for breakfast and dinner) but started gaining again when we did our routine.