Hi
I finished 35 sessions of radiation 4 weeks ago.
I've lost 15kg/33lbs. Now weigh 170lbs.
I look gaunt but feel okay. The oncologists want to see my weight going back up.
I have one big ulcer on my tongue, which I've had for 10 weeks and is very painful.
Throat is also very sore.
The Docs say that as soon as I start eating properly the mouth will repair - so tough it out.
Which I am.
Recent development is: every time I eat, clusters of small clear blisters instantly break out in my throat & mouth, usually on the roof. Quite painful when food passes across them.
Has anybody had the same experience?
I feel like I'm on the way back but this very frustrating.
Hopefully it's a precursor to changing back to normal?
First post, regards Budgie.

Budgie - welcome to our family. We're here to help. Also congrats on getting through a tough treatment. You fit the profile of many of us in the weight loss department!

I'm not sure about the blisters. I had tons, but they eventually went away. In my case I started on liquid nutrition maybe 2 weeks into radiation and wasn't ready for solid food until a good 6 months after. So that fact that you're eating solids 4 weeks post rads is amazing to me! I trust you're keeping it to the soft and wet stuff.

Anyway, I'm sure someone will weigh in with a comment that more specifically speaks to your concern. Hang in there!

I heard many people with this complaint, and no clear answer what is the cause, and I have no definite answer either, and believe most likely It is from canker sores, fever blisters, water blister, caused by the the herpes simplex virus, HSV-1, which can be reactivated by illness, poor nutrition, radiation, chemo, etc. Another I heard was from acidic foods, so staying away from them may help, and then heard the usual, it's part of the healing process, but I want to know why.

This is going to bother me until I find out lol. My RO visit is not until August

Welcome to OCF! It sounds like your recovery is pretty normal with the mouth sores. I know they can hurt like heck!

Ask your doc for prescription magic mouthwash. You can swish it around in your mouth for a few seconds to numb your mouth to enable you to eat easier. If you are not getting enough nutrition and hydration you will not heel. If necessary you can always get a nasal feeding tube which is temporary and will help you to take enough in daily. For the next 11 + months you should be taking in at least 2500 calories and 48 oz of water every single day. High protein whey powder will help you to heel also, but check it with your doc first.

Best wishes with your recovery!

I'm almost 11 weeks out and I still get water blisters and sores pretty often on the hard and soft palate. I also can feel when this happens the hard palate gets a bit inflamed and puffy. It seems to be either:

1. food that is acidic (not necessarily acidic food you would expect). Juices burn sometimes, tomato sauce has to be chased with milk, ginger, too much pepper, etc

2. food that is hard, crunchy or sharp. It seems to irritate or cut the inside of the mouth.

I usually just deal with the pain when it comes up, but it is pretty annoying. Hopefully it will continue to improve.

Interestingly, the blisters and sores only appear on the side of my mouth that received the greater amount of radiation (my left side). The hard palate feels completely different across the midline when it is inflamed and blistered.

Re the weight. Don't expect to quickly regain your weight as your body will be doing a great deal of repairing itself at least for the 1st year post Tx. I was consuming appx 3000 cals each and every day post Tx and I didn't start to gain a pound until the beginning of my 2nd year.

My weight started coming back when I returned to the gym

Hey there... I think andrew answered most of the questions. Certain foods are very acidic. They will cause blistering and pain. stick to soft, non acidic foods, thickish and milky - easy to swallow and tolerate. This will help immensely.

My advice on the ulcer CLEAN IT... After each and every meal. Brush your teeth with a gentle toothpaste (I use a mild mint one - children's prevident or something like that - it's made by sensodine - it helps build enamel and is not too strong a mint so it doesn't burn. Follow up with a waterpik on low, and filled with lukewarm water - to rinse away anything left in your mouth.. If you don't have a waterpik then rinse with the salt and baking soda water mixture and don't put anything else in your mouth. Do this after each meal and or drink. This will clean the area and facilitate healing. There is also this great oracort gel that thickens and dries and helps heal. Maybe you can get a prescription.

take care.

It's herpes simplex virus, which thrives in an acidic environment. There are foods to avoid, as mentioned. You can ask about antiviral meds too. Here is a link with more info, and home treeatment.

http://m.wikihow.com/Heal-a-Cold-Sore-Naturally

WOW!What a fantastic response. Thank you all so much for your guidance and information, I really didn't expect much, but I'm now quite emotional and feel very blessed to think that all you complete strangers bothered to answer! At this point I have concluded that the Herpes simplex virus has got something to do with the blisters. Unfortunately both my wife and son have cough/colds at the moment and there is every chance I may have a virus of some kind, although I feel quite well. It's winter in Australia, not that we have much of a winter, and everybody seems to be coughing and spluttering. I am going to see my GP tomorrow so I will ask him about the blisters/virus.
I was interested in your comments about gaining weight as I had already decided to ask the GP whether I should start weight training and walking or whether it would burn too many calories? My other concern at the moment is SWOLLEN FEET. I'd be interested to get your views on probable causes/treatments.

Glad we could help, and it's always best to double check with the doctor. Light exercise can increase muscle, which is heavier that fat, and even in the hospital they want you in a chair, and walk about, but ask the dr. Maybe even physical therapy to get you back safely, and can continue on your own. The swollen feet could be from lack of movement, sitting in bed. It also can be a sign of kidney problems, due to treatment, but more the ankles, but don't doubt it extended to feet, or other medical condition, fluid retention.

I went back to the gym, really light exercise, weights like 10lbs lol, but your muscles will still grow if that's heavy for your muscles. You don't not want to get injured, and have a setback. I did last month from a kidney stone, causing acute renal failure, and need for surgery. and two blood transfusions from the lack of erothpoitein being produced. So I needed a month to recuperate.

As a fellow Aussie I just wanted to welcome you to the forum. There are a few of us here!
As my treatment was surgery only I cannot be of much help in answering your questions however I see you are getting some great responses.
Hope your family get better (I had the flu shot in May) soon and that you do not come down with a virus.
Please keep us posted on what your GP says but for any more serious questions I am hoping you have a team from the hospital that are keeping an eye on you?
Cheers
Gabriele

Hi Budgie, my brother is in Perth, as well. Where were you treated? Being only 4 weeks post radiation, you will be just emerging from the worst of it. As others have said, don't expect the weight to come back any time soon - I think you've done very well just dropping 15kg!
My brother found carb soda, as suggested by Cheryl, helpful withe ulcers but also in keeping his oral environment better able to protect his teeth. Good luck with your recovery.