4 months out

Hi there wife:

I am 5 months post treatment for oropharayngyl cancer with lymph node involvement.  I had the full course of radiation/chemo/cysplatin and it's only now that I am beginning to have any serious trouble eating.  I lost my taste shortly after treatment but that has returned.  Only recently have I started to aspirate everything, making it nearly impossible to eat.  I have such a large hole in my soft palate (which is where the main cancer was) that everything I eat goes up my nose until I snort it out to swallow.  That's when the aspiration kicks in.  It isn't much fun to even try to eat anymore...I am limited to ensure, oatmeal, and pureed soups. I am waiting to get a feeding tube now...I have avoided it so far, but now am looking forward to it as I am starting to lose weight.  I understand him not wanting to go out to eat...for me it's just a waste of money and I don't think other patrons would enjoy watching me either..lol.  The only difference with me is that I have a really good appetite..just can''t eat anything!  I agree going somewhere warm and nice would be great but what's a holiday without making a pig of yourself..right? lol  Anyways wishing your hubby all the best and hope he turns the corner soon!

Wendy

the_wife,

At least he is looking good, I give you both 10 points for that.  I am almost 4 years post and I still cough and I think I’m okay.

It’s time to try an experiment. Put some sugar in his mouth and see if it tastes whatsoever, the same goes for salt and maybe some other things with distinct flavors. I even went so far as to buy some magic fruit (little magic pills) and I would peel some oranges and have them ready to eat and then throw in a couple magic fruits and as soon as they were dissolved eat the orange quickly. It didn’t work as well as advertise, but it was a heck of a lot of fun and I could taste the orange a little bit.

I would go to Sunday dinners at my parents house every weekend and have one spoonful of peas, one spoonful of potatoes and a bite chicken.  Everybody wanted me to eat more but I simply could not, the texture and taste was too awful, but seven months post it all changed when my new normal kick in.

Don’t beat yourself up. His new normal will follow his timeline and may mimic his old self or not.  I used to travel around with a little igloo cooler full of protein drinks and water. Many times I went to lunch with my wife or my boss and I would simply have something to drink and I was happy to be able to.

Good luck and good eats.

Matt

I always thought we should take pictures of ourselves prior to treatment because I think I look better before.

Hello to the_wife,

I am 11 months out from 30 IMRT radiation treatments over 7 fields for stage 3 SCC Tounge and Tonsil. It does a number on you for sure. I also had the white/yellow stuff covering my tounge. Somtimes it was patchy and sometimes it covered the whole thing. My Oncologist and ENT both dismissed it as thrush but instead said it was related to mucositus. It does go away. I still have some sensitivity on different parts of the treated tissue, (possibly related to the amount of radiation aimed at specific areas).

Taste I am still struggling with. I can sense sweet, salty and spicy but if you blindfolded me and had me taste test random items, I probably could not tell you what they are. Swallowing is much better although the radiation does change the Physiology of your throat. The tissue has become fiberous. This is all normal. The coughing will improve also although I still caough some times.

My ENT has said that he see's improvement in taste take as long as a couple of years but it will come back to sme degree.

He sounds at 4 months right on schedule although everyone is different.

Hope this helps

I came to give an update on my status and I can say that being also about 4 months out, its pretty similar to your husbands.  Getting enough calories to maintain my weight is my biggest challenge right now, so if he is doing that then you should be happy.  Since everything tastes bad and its hard to swallow much without needing to drink some water, its hard to eat much.  I still drink a lot, whether it be Ensure Plus or a Frappuccino Mocha, which is easier to manage.

My ENT says I have some of the white coating, but I haven't had much coughing problems or swallowing issues thankfully.  Keeping active is also a bit of a challenge, especially if you are not eating much.  Looking forward to spring with some warmer weather and hopefully more active taste buds.  Best of luck!

the_wife said:

Hi everyone,Yes, my hubby

Hi everyone,

Yes, my hubby had a swallowing test last month that he passed with flying colors. 

traceyd1, you're probably right that it's the food I was serving that was making him cough - like soup with veggies, so I'm trying to go for "slippery foods" and pureed soup instead. 

Matt, we haven't tried the taste experiment yet, but that sounds interesting. Never heard of magic fruit. I remember the RO saying that 9 months will be the new normal, so I guess we're halfway there. Thanks for the 10 points - I'll take it. Were your protein drinks that you carried in the cooler homemade or Ensure type supplements? 

Supagama, I'm so sorry to hear of your troubles with eating. I know in my hubby's case it could be worse and we should be happy that he's got all his parts and at least doesn't have issues that other folks do. How frustrating for you to be hungry and not be able to eat!

Bill, you're just amazing - I'm always impressed how much you've overcome after what you've been through. Yep, mashed potatoes and scrambled eggs seem to be the ticket right now. I'll ask his doc about doing another study, but the coughing seems to have subsibed for now, thank goodness. 

Barbara, it's probably a good thing that your hubby is still on the tube. I say don't rush it. The only reason my husband wanted it gone is because it really bothered him. He said it smelled and it hurt and he couldn't sleep on his side (but I noticed he still doesn't sleep on his side). He's happy that it's gone, but now is faced with eating every meal which is a psychological struggle. But who wants to eat if it doesn't taste good and you're not hungry? I'm trying to change my mindset and not take it personally, but it's hard. I think I'm having sympathy pains. About a week ago all of a sudden I had no taste buds and it felt like the tip of my tongue was burning. I went to the ENT and she thinks it's hormonal, but may do some blood tests. UGH.

tomb247, yes that white stuff is gross. I think that's gotta be what's affecting his taste buds. His ENT said to try licorice tea.

no1artist, my hubby had tonsil cancer. What kind did your husband have? I tried to type all that in my profile but it didn't save it, so must be a technical glitch. Black hairy tongue...yikes! Glad that he's better. Maybe I'll stock up on the probiotics and kefir. Can't hurt, right?

Tragic-king, wow there's a lot of us at the same point in recovery right now. Keep in touch so we can compare notes! 

Thanks for all your comments. You guys are awesome!

I guess everybody progresses in their recovery a little bit differently but one thing your husband could do/try for tasting, if he has not already is have your doc call him in a prescription for the drug nystatin in an oral solution, it treats thrush. I had a mild white coating on my tounge so almost on a whim I told my doc and he had me try it. All I did was rinse and spit with it 3 times a day for a week then all of the sudden about a week after that my taste improved from probably 30% to 50% plus. I really turned a noticeable corner there and since then it has been steadily improving. I am probably at about 70% today and I can enjoy most foods. I don't know if all that was just a coincidence in my recovery but getting that white coating of thrush bacteria off my tounge really seemed to help me.

ttyl,

jake...