He is doing well eating by mouth. He actually ate salad last night! WOW! He has come so far. The PEG is giving him some trouble... irritation, leaking and the like... the surgeon wants him to come in and have it re-fitted for a different sized cap? So... the saga continues. Mom is MORE THAN ready for him to go back to work! HAHA.

LarrysDaughter:

Your dad is doing great. He is very lucky to be able to eat a salad at 5 months post treatment. How is his taste coming along?

Sorry to hear of his peg tube issues. Hopefully he wont need it too much longer.

Christine

Hi Christine!

Thank you...I cannot beleive it either. His taste is coming back... it started off with smelling things and wanting to taste them, and now actually eat them. At first he said everything tasted kind of like metallic. He really wants that PEG out so I think he is really doing what he can to eat by mouth and gain nourishment to get it out. He seems to think in a few weeks it will be removed. We'll see...

Thats great news. Thats so similar how your dad progressed. I used to tell my kids, my nose turned into the 'super-smeller' after the treatments were over. It was the same thing, I could smell things but everything tasted burnt.

If your dad wants to be peg-free, talk to his nutritionist about his diet. Maybe he is getting enough of a balanced diet he could get rid of the peg. Just be sure that his weight is steady and he can swallow pills like the big antibiotic horse pills just in case he would get sick. Thats the only reason I still have my peg is cuz of upcoming major dental work and Im unable to swallow pills.

Im so glad to hear your dad is doing so well. He went thru a heck of a time as did you and your mom.

Christine

LarrysDaughter,

Here's what I posted 5 months out of Tx. Maybe he/you can relate. Sounds like he's doing great.

One month ago (duh) I posted "How I am 4 months post Tx" and I didn't expect to give an update so soon but something has happened to change my mind. I will first start with the 4 month post for those that didn't see it:

Today marks the end of the 4th month after completeing my Tx and I thought it would be useful to others to post my progress.

Taste-I have almost all my taste back. I would rate it 9 out of 10.

Hair on the back of my head-Beginning to grow back.

Weight-Lost 35 pounds and have regained 5. Not sure I want much more back.

High frequency hearing loss-Was tested at Moffitt and they confirmed permanent HF hearing loss caused by Cisplatium. MO wasn't so sure and said to wait. Either I am getting use to it or it has slightly improved.

Mental capacity-Fully recovered or I'm worse off than I think. LOL

Physical-Muscle strenght 7 out of my 10. Haven't exercised like I use to due to dry mouth.

Stamina-Am able to almost work as much as I use to. Work 9am to 7:30pm. Use to work till 9pm but I am pretty tired by 7:30. Can't keep my eyes open by 10 to 11pm.

Turkey chin-Gobble, gobble, still have it.

Dry mouth-This has been the worst side effect to deal with by far. Not in pain but in affecting quality of life. Just in the last 2 weeks I have noticed a slight change for the better. It's hard to describe but it has improved. I would rate this 9 out of 10 being the worst.

All the other side effects I was dealing with at the end of Tx went away around the 3rd week post TX. Those being: nausea, throat pain, constipation, and maybe a few that I can't even remember now.

All in all I am very pleased with my progress especially considering the way I felt at the end of my Tx and I hope that others who are currently in or recently completed Tx will find this useful.

That was one month ago.

As I said I wasn't planning to followup so soon but just in the past 2 weeks something has improved with my dry mouth. I say something because it's hard to define BUT it has made a great improvement in my eating. I still sip water throughout the day but I don't wake up during the night with mouth related problems any more and my eating has taken a hugh turn for the better. I even look forward to meals now as I am beginning to try some of my old favorites that I had given up on. For instance, I ate a small thin crust pizza by myself the other day (well not all the crust) and I even ate a whole slice without having to swallow liquid. I find myself eating almost like normal, I mean taking 2 or 3 fork fulls before I feel the urge to drink. I don't think my taste has improved but that dry mouth crap has.

Good point about the pills! I will tell him.

David, as usual you have been one of my guardian angels and my guiding light. I will keep this as a reference as well as passing it along to my Dad!

You sound so proud of youe Dad and I bet your Mom is much happier with his being able to eat. I remember him and a few of the hard times. It was his super wife and daughter that moved him . Tell him congrats for me . I still have that !@#$%^&*+&#@$ liquid diet . LOL One day sometime in the distant future, I hope I can poat about eating salad and any other real food that has to be chewed. Have a great day. Jim

A-ha! Jim.... I was just thinking about you. Thank you for your sweet posts! You always make me smile.

I hope you are doing well. Did you ever get the results of your test???

I could see you smiling! I even smiled! I am so happy for your family.

Noemi