My Hubby is now about 6 weeks out of radiation treatment and says some of his taste is back but has no appetite and even is repulsed by the thought of eating, even after a day with a good workout. Is this normal? He expresses fear that "the cancer may be back elsewhere." Needless to say, this thought stress him out and isn't doing me much good either. Is this a normal phenomenon and his fear premature? Your shared experience would be greatly appreciated. Thanks, Pam

Hi Pam:
Yes this is normal, or at least it was for me as well. Six weeks out I still struggled to position food properly and swallow. When I did eat it was usually cereal or eggs. Because of no weight gain I lived with a PEG tube for several months post treatment. The appetite does come back, the taste is a big question mark, and my sense of taste fluctuates greatly from day to day. I just thank the good Lord that I can eat and swallow again.
That "fear" is normal but it will get better. If you notice it isn't fading, seek help. You can play a big part in keeping him confident during this stage in recovery!! If he's working out, etc., after 6 weeks I would say he's doing great and has nothing to fear!! "Fear" is what he felt when he was diagnosed, not what he should feel now (even though we all still go there now and again)!!
Hang in there and stay positive. Every day is a gift and gets better.
Best regards,
Steve

This was normal for me too. Just the thought of eating made me sick. Even though all I wanted to DO was eat. It was a real quandry for sure. I think it's the dissapointment we feel when we DO eat something,as it rarely is the same, and the anxiety of KNOWING it will never be the same. Somehow we all move past it and the new norm sets in. Funny how quickly and easily I was able to go from thinking juicey steak when I was hungry to thinking "yummy soft scrambled eggs with green peppers, onions and lots of cheese!". This will pass, trust us.
Love,
Minnie

I know with me it been rough. It been two months today since my last radation treatment and I still do want to eat. I still on TPN and really want to eat. Something sounds good and then I get it fixed. Then I do want to eat. I hope I can start eating soon.

Barry

Pam
this sounds normal to me as well. Once you are done with the radiation you do not have the constant interaction with your medical team. Also one feels worse after the end of the radiation treatment.... Eating is frustrating even when the taste begins to come back. Things do not taste right and some things definitely turn you off such as red meat (in my case). I have eaten a lot of yoghurt (many different flavors). Things are happening when the mouth is healing there are many changes. There are blisters, irritations and color changes. All of this can be unnerving. Prior to being diagnosed with cancer, a blister or ulcer is not a big deal, now however it is far more sinister. (even if you know damn well that it is nothing to worry about it still rattles your cage).
If your husband is working out after 6 weeks he is doing fine!

M

I share the same experience with just about everyone above. I am 10 weeks out from radiation and don't have an apetite or saliva. I have to force myself to eat. I drink one of those carnation VHC drinks for breakfast and lunch, and try to each a frozen dinner for supper that involves pasta with sauce, mashed potatos with gravey, meatloaf with gravy, swedish meatballs with noodles, and pudding for desert. I took me a month and a half after treatment to attempt to start eating these kinds of foods. A month after my treatment ended my ENT asked why I wasn't eating more solid foods? I was only eating cream soups and pudding. He sent me down for a swallowing test in which I found out I had no problem swallowing more solid foods, but just had to learn to chase it with water or a drink. My ENT said if I didn't use my swallowing muscles I would loose them, making it more difficult to eat in the future and possibly needing to have my throat stretched open.

Right now I live with the fear of going through my first PET scan in three weeks, since the treatment ended 10 weeks ago. I am praying that the radiation and chemo cleared it all up. I didn't have surgery. ENT felt rad/chemo would do the trick of totally shrinking the tumor, and surgery would involve taking almost half my tongue out. I have found a few success stories of people not having surgery and try to assure myself it is possible.

Tom

Tom
some of us had surgery and then had to have radiation as insurance or because the margins were not clean (enough) or the beast actually came back. The combination radiation/chemo definitely works. Sometimes I wonder if I just should have gone for rad/chemo and no surgery..... but this is one of those hindsight things.
Good luck with the PET..... remember to lay still, do not talk and do not chew anything before.

M