Hi. John is currently 6 weeks out of treatments which ended April 15, 2009. Thank God the mucus issue is just about gone and he started talking again last week. He had a check up with his Oncologist last Friday and his blood counts were still a little low. He still has a lot of pain in his throat and mouth. He still isn't eating anything by mouth and getting all his nutrition through the PEG. He does drink water and Gatorade every day but hasn't started back on foods yet. I know everyone is different and recovers at a different rate but is it "normal" to still be in so much pain and not be able to eat by mouth? He has an appointment next Monday with his ENT. I guess I thought at this point after treatments stopped that he would be eating by mouth.

Things seem to change week to week and not day to day. I'm trying to be patient and stay positive. He does have prescription painkillers which he won't take. He does take liquid tylenol every once in a while. His ENT did give him a script for Nystatin for thrush which he does use. Have a great weekend. Wanda

Wanda, As you say everyone is different and most of us don't make any progress the first couple of weeks after tx end. My experience was that in the third week or so I started back on soft foods such as jello, soup, apple sauce. Then I ate whatever my throat would allow. I had my PEG removed 6 weeks after tx as I was able to feel confident about getting enough calories down to do away with it. Return of taste buds took considerably longer. I hope the ENT will be able to shed some light on this and in particular the amount of pain he is still experiencing in this throat and mouth. Hope it's not thrush. Keep us updated and good luck.

Hi Wanda,
Martin was the same as Bill and started on soft and liquid foods on the third week. He had things like custard, creamed rice, liquid porridge. The issue was mostly the taste then, every thing tasted salty so he had to add maple syrup to everything. The taste buds are 70% back 7 months on. So it improves but slowly.
As for the blood count, Martin was low for months after, until I went to the health food shop. A lady advised me to buy Feroglobin which has Iron and vitamin B12 and other stuff, and within a couple of weeks his blood count was normal. He also got a bit more energy.
Have a nice weekend

Wanda,

We all can recover at a different rate but generally the recovery is painfully slow. I'm sure you are keeping in touch with his RO but aside from that try to encourage him to start to use his swallowing muscles a little more each day and get him to try some of the softer type foods others have mentioned. At three weeks post, that's when I walked out of that dark tunnel, I was anxious to get back to normal so I was putting everything in my mouth. Note I didn't have a PEG so it may have been easier for me in the swallowing dept. I didn't enjoy the lack of taste or the time it took to "eat" anything and I still relied on my VHC to get my calories but slowly I started to taste more and drink less. It wasn't until 15 months post Tx that I really started to enjoy eating again but he's got to start some time and the sooner the better.

On the other hand, I am 14 mo.s post tx and can still only eat clear soup and soft cereal, mostly because of dry mouth and taste. I wasn't able to swallow pills or much other than water until about 4-5 wks out and had to see a speech therapist for help with that. My wife keeps pushing me to try more foods, which gets frustrating for us both. Patience isn't easy but that's what is needed.

I experienced really bad throat pain starting at the very last week of radiation and lasting for a couple months after. It was similar to a severe sore throat in the upper portion of my throat, mostly on the back and side of my throat where the tumor was(I assume due to the amount of radiation concentrated there). The pain was higher up in my throat though compared to the lower portion which was very sore during rads. It made me nervous, so I went in to have my oncologist check a couple times, but he always said he didn't see anything and that it was from the radiation. This definitely delayed my eating & drinking progress, but the pain did eventually go away completely. I remained on the patch and liquid Roxicet until the pain went away. Thank God for the feeding tube!

My husband, Bob, finished rad & chemo on 9/12, no surgery. Post tx he had such thick mucus, gagging, and vomitting that he was unable to take in any appeciable amounts of nourishment until Dec. Once he started increasing his diet, it went quickly, which was a great relief. RO wanted to see diet advance on at least a monthly basis, even if it was slight. Peg was removed 4 months post tx.

I was very worried that he would never eat again but the advice I got here was correct. It takes some patients a very long time. Bob can now eat most foods, except spicy. The advice about recovery requiring a full year, was also accurate. Expecting too much too soon only sets you up for disappointment. I'm amazed by the improvement in his condition even during this past month.

I am out of treatment by at least a year and a half, my throat still hurts and is getting worse the past couple of weeks. The oncologist called me today to see if the last script was helping with the pain, I told him no but I sure have been sleeping good.Better than ever with this stuff , xanax and a half a perc plusI am taking 900 mgs of neurotin too. Enough to knock out an elephant. The last time i slpt this good was when I was in the induced coma. LOL

I forgot the magic mouth wash is the last I take then hit the bed and have the TV off in 5 minutes.

Wanda, yes this is perfectly normal. It can take a while to relearn to eat. Keep encouraging him to drink alot it will help with the healing.

Please do not start giving your husband vitamins or anything else unless you run it by the doctor. A health food store employee is knowledgable but not trained like a doctor in what is most helpful in a cancer patients recovery. Ive read some old posts saying certain vitamins should be avoided. Be careful!

Step by step and day by day slowly he will recover.