Hi,my name is Pam. I was diagnosed in The first part of Feb '06. I have ( had?) tongue cancer on the underside of my tongue. It was stage one.

I had 2 surgeries and 30 radiation treatments.My last one was April 20th. I thought I would be eating and feeling good by now. I had no idea the radiation kept on damaging tissue after they stopped. Now I have blisters and ulcers. I have been on acyclovir for a week, no improvement. I am very discouraged right now, worse than I was at any point so far. I am hungry! Mostly I live on things like Boost, Ensure and so forth. I can eat very little even with the Radiation Theraphy Mixture. It usually ends up with me crying. Everything seems to cause the blisters,with the exception of water. I am not a "crier" but I feel like the situation has got the best of me. I have many things to be greatful for in my life and I think of them often. If I didn't have so many good things it would be a different story. But even though, I feel like the fight is leaving me.
I would really like to know something positive is on the horizon.
Pam

Hello Pam

Sorry to hear that you are going through such a difficult time. It will get better. The others will be here soon to help you with support and advice. Many of my patients have found Gelclair helpful. More information also on the USA Gelclair site. You can get your doctor or oncologist to prescribe it.

You may find this discussion regarding Maggie's similar difficulties helpful.

Best wishes
Vinod

Hi Pam,
Sorry to hear that you are`going through such a difficult time.
I was like you - I expected to feel much better within a month or so of finishing my 33 sessions of RT following a radical neck dissection. It didn't work out that way and I promptly had a nervous breakdown - I was well on the way to one during my RT.
You WILL improve - it may take months and probably will. Other side effects may crop up.Don't think the worst when this happens - it is just side effects. When you come to terms with all of this you will improve mentally (a huge battle in itself). See your GP for anti-depressants - you may be the last person to realise that you need them. Anti-depressants helped me a lot.
It's nearly 17 months since my last treatment and I would be a liar if I said I was in perfect health - BUT I have a real quality of normal life now. I am back working part time after getting an ill health retirement from teaching.
I feel I have a future and am planning ahead.
All this will happen to you - it will just take time. Don't rush it girl.

Best wishes - Tony

Oh my goodness, Pam... You are in a big'ole slump... and who wouldn't be!?? You are having a hard time right now... and I'm sure sorry. Radiation is so harsh and it's effects would make anybody cry... (so, do not fault yourself for being a "crier"). My husband is a proud, strong 200 pound man... and he cried many times during and after radiation/chemo... uncontrollably at times.

While I don't have the answers for your blisters and ulcers... (I'm sure Dr. Joshi can address that)... I will say this...

You are not even four weeks post radiation. It's still quite early in your recovery, so please don't think you are not on track or doing as well as you should. I know you are weary and frustrated and want to feel much better than you do... But, it takes time for the body to heal. After enduring the surgeries and radiation treatments, I know you are physically and mentally at your wits end. Totally understandable! You are drained and tired. My husband experienced some of his darkest days after the surgery/treatments were all behind him... during the recovery period when he wanted so badly to feel better... and fast... to begin coming back to life. But, he got through by the grace of God... and so will you. Today, one year post treatment, he has completely recovered. Except for dry mouth and some issues with fatigue, he is doing remarkably well.

It became necessary for him to start on an antidepressant which "took the edge off" a bit. I totally believe that cancer patients, above all others, should have any and everything that might help get them through. Pam, if you are not already taking an antidepressant, I would suggest that you discuss it with your physician(s).

As healing continues in your mouth, I am so in hopes that you will be able to consume something other than nutrition drinks. I also hope that doctors can give you something to help with the blisters and ulcers. Because my husband's tumor was far back at the base of his tongue, there were no visible blisters or ulcers... although I'm sure he had them at the site. His swallowing failed completely and received all fluids/nutrition formula via a PEG feeding tube. It was 11 months before he could drink or eat again. I am glad you can take Boost, etc. orally. Just wish your mouth didn't hurt so much.

Thank God your cancer was stage one. Have you been declared in remission? Once you get past the hurdles you are currently dealing with... I do pray that recovery will speed up a bit and you will start feeling more hopeful and more like yourself.

From my heart,

Melanie

Thank you ALL for your responses.I do feel a little better with the info you've all shared. I wish the doctors had told me something about what to expect post treatment. I was very positive, like a regular little Pollyanna, I had no idea, I just expected things to improve immediately, not continue to get worse.

My brother is also going through this, his was stage 4, base of the tongue, throat and lymph nodes. His treatment was about 3 months ahead of mine. He had more radiation treatments than me, plus chemo. He had a very tough time, in the hosp. several times. But he is eating like a little pig and already putting on a little weight. He still isn't 100%, far from it, but he is improving greatly. He went through so much more than I did, I just thought I would be doing better,too.

I called my Dr and asked him to phone in a script for Gelclair. Maybe the coating will prevent the blisters.

I haven't had any test post treatment to tell if they got all the cancer or not. My ENT said that they have to do PET Scans, that blood test don't tell anything when it is this kind of cancer. Which is odd, because that is how they are monitoring my brother.
Again, thank you all so much,like I said, I feel a little less bleek.
Pam

Dear Pam,our Radiotherapy unit advised a mouthwash of 1 teaspoonfull of Bicarbonate of Soda to 1 pint of water,to be used every few hours. It not only helps to clean the mouth but is very soothing. Hope this helps. Fran

Hello Pam

To relieve discomfort you could also try the following suggestions:

• Rinse with a warm, dilute solution of sodium bicarbonate (baking soda) or salt & bicarbonate every two hours to bathe the tissues and control oral acidity. Two teaspoons of bicarbonate (or one teaspoon of table salt plus one teaspoon of bicarbonate) per quart solution is recommended.
  
• If you are experiencing pain, rinse with one teaspoonful of elixir of Benadryl before each meal. Be careful when eating while your
  mouth is numb to avoid choking.

Let us know what helps.

Best wishes
Vinod