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Having had my base of tongue tumor (size between T1/T2) lasered out late June, 2004, six weeks of radiotherapy followed and was completed on 22 September, 2004. I had no chemotherapy.
The after effects of surgery were minimal and any pain was dulled by pain killers. Swallowing painless also as all nutrition initially was via liquids.
The side effects following radiation were as follows:
Crop developed under chin
Loss of weight (21 lbs) (no PEG)
Loss of taste
Very limited saliva/dry mouth
Limited mouth opening
Jaw/skull junction ache
Rash on back
Congestion (particularly at night)
(I am sure the above, and others, are familiar to members).
I have experienced each of these (not all at once) and, of course some are still with me.
My lower weight is stable and better suited to my height,etc.
My GP has been superb and given me all the assistance and medication I could wish for. My oncology team have been very informative and responsive to my queries.
However, their role (the team), following completion of radiotherapy treatment is checking my progress at each check up and, since my recovery appears to be going well, could be summed up as a purely monitoring role and hoping the treatment has been successful.
Should things take an adverse turn no doubt they will take appropriate action.
Since my tongue surgery was comparatively minor (compared to many I have heard of through the forum), most of my side effects were the result of radiotherapy. Even so, my radiotherapy side effects are less severe than many others (no teeth problems, for example).
After 8 months recovery period I consider myself inordinately lucky after the attack by this insidious disease. Long may it continue.
Hi Fridge, I have had many of the same problems, great deal of ear problems, high noise, like tuning in old fashion radio. part of the base of my tongue was removed, so have had major problems with eating and talking, also jaw locks from time to time.
Dizzy spells continue, in artificial light, i.e. shops, never in the open air. Big Bear Hugs
I had radiation only, no surgery, for my tonsil cancer, and had nearly all the same side effects as you list, except for the back pains, itching, and rash.
Most of the symptoms (one year after treatment) are gone, except the dry mouth, loss of taste, and difficulty swallowing. Even that is getting better.
Thank you for your reply re my after-treatment effects. I delight in hearing your good progress and I am hoping I make similar improvements by September/October 05 (one year after treatment). I seem to be on the right road.
Keep well, regards, fridge
As with Ron in LA, I thank you for your reply to my effects ater my radiotherapy treatment. I note that you registered on the forum in Septemeber 2004. Does this mean that you are in the early months following treatment (radio only?)? If this is so, I hope you progress as well as Ron and myself appear to be doing.
Good luck, regards, Fridge
I finished my radiotherapy 7 weeks ago and I too have similar side effects as you. I would say I am doing really well (I think) I still have alot of pain while swallowing, lack of saliva is a problem as well as mucus at night, I have the odd pangs of nausea but I have medication for that, dramatic weight loss and lethargic. Does anyone know how long these side effects carry on for?
I get really bored how about you? but I don't really have the energy to do that much.
I initially had a hard time getting straight answers about 'how long will this last'. My doctor now says I should continue to show improvement for another six months (my treatments ended twelve months ago). But that pretty much means that the way I'll be in six months will be permanent.
Pretty sure that means corned beef sandwiches, spicy Mexican food, pizza, Subway sandwiches, steak, and anything as spicy as a breakfast sausage are all off my diet permanently.
I can now eat and enjoy sushi, which I could not do six months ago. I can taste things that are very salty or minty. I'm maintaining my weight well enough that my wife has stopped accusing me of being anorexic. I'm at 177, which is 12 1/2 stones to you Brits. (--:
One more thought, Tracey. Your getting bored is the best sign of all that you are recovering. I remember going in to the cancer center during and shortly after treatment and regardless of wait time I was never the least bored. Walking to and from the parking structure was about all the stimulation I could take. Months later I was bored by the least wait, flipping through the magazines, etc. I realized it was because I was healthier.
I suggest increasing your level of activity. The more you can do the better you will feel.
I do find each day I am feeling better, then I do something, like housework or go to my horses and help out, but then find it sets me back a couple of days, it is frustrating because I feel better and then my body tells me differently. I suppose I have to take it slowly.
I have lost 36lbs in weight, and my husband gets quite worried about how thin I am, just like your wife, I on the other hand am quite pleased with my new figure!!
Hi Tracy, somedays I feel almost back to normal, then I do a bit too much, and the next day I am wiped out and feel so tired; I think you have to build up slowly; when I first tried to do things, I would almost faint and my balance would be very poor; I notice when I am under artificial lighting I have a bad sense of balance.
Things will improve, but try not to push yourself too hard.
BIG BEAR HUGS
The last 3 posts (Ron in LA, Tracey, garance) are very heartening as they all seem to be on the road to recovery. I consider myself well on the way to full recovery but have been told it will take at least a year (I am 7 months beyond treatment).
I find I am improving slowly each week with the occasional relapse day. I originally lost 21 lbs in weight but steady now at 18 lbs lower than my original weight and that is where I wish to stay.
My taste is improving very slightly as is saliva level (I believe). Dry throat still present but less so. Not sleeping fully through each night.
Energy level definitely improved. I visit the gym each early morning (as was my old practice before disease attacked me).
My congrats to above three. Regards, Fridge
That weight loss does make you have a skeletal look as it's so rapid. I am much the same weight as when I lost the total 64 lbs Sep/0ct 2002, but I think I look much fuller and have started to take a larger size jacket even though my weight is very similar to 2 years ago.
I think you just lose so much muscle after the rads when so inactive and unable to eat much, that skin just covers the bones and there is no fat on you for at least a year. Then slowly the body recovers after the rads and is still burning lots more extra calories than the normal daily requirement for non treated adults.
You can never take in enough initially as the radiotherapy is so destructive, so the body just eats itself up so it can rebuild back good tissue. Even though the weight difference now may only be a total of a 5 or 6 pounds later on say 2 years on, it can seem like you are a stone or two heavier. Curves reappear everywhere and you do look less fragile. It seems a different type of weight loss than when you go to a slimming club.
So take advanatge of getting some skinny clothes whilst you can. Short trips to the shops will also build up strength. My husband used to take me out to town and he'd wait in a cafe and after half an hour or even as little as 15 minutes I'd ring him and say I've had enough, I may collapse!
But I used to manage to get just one or two essential new smaller items. Bras were the worst - with such a big weight loss I replaced them several times going down 4 main sizes as well as the addition of individual different cup size changes - measurements all just kept changing.
Amazing how fast you will build up to 3 hours shopping or even a full day if you have lots of tea shop rests !! Of course you can always shop online from net-a-porter to Marks and Spencers to Monsoon. All are online and so easy to buy from........hmmmm.....
I have most of the same long term problems as the rest of you, but taste is improved drastcially after taking zinc tablets.
My latest problem is tinnitus which seems intermittent and may or may not be connected as apost radiotherapy problem.
So good to hear that your taste has improved drastically. What does this mean? Are you back to normal taste? Are you able to taste bitter and sweet etc things?
I had a bout of tinnitus so maybe it is treatment related. Anyway, I am thankful that you have given me the hope that my taste may be significantly returned.
I also agree with your comments about weight loss although my loss was less dramatic than your loss.
Hi Fridge, The tinnitus is treatment related.
I have it and I'm 15 years out. I find it
rather annoying. Glad you are doing okay.
Hi Ron, Pauline, and Tracey. Take care
Fridge my taste is very much improved. Not quite normal, but good on MOST days. It can still go off, but more days are good and I look forward to foods now. The texture is better often, but that is where much of the problem still is. There are still textures that are undesirable, but fewer. I don't like meat much still as its just hard going to eat. Why bother when there are other things that are ok now. But I have begun to enjoy food again to the point I have to watch what I eat and have had to hold slow on the double cream I used to lavish on things.
Like Tracey I like being slimmer and able to select from a wider range of clothes. I'm the same size as 30 years ago.
I never thought I'd taste so well ever again. Something is still missing and thats more to do with swallow and getting the food moving, but more mouthfuls taste ok, but I'm still bored easily by a normal portion/large quantity of one type of food.
Variety is the answer. I noticed a definite difference this week from last Novemeber. Last Nov I went to a beauty event evening and they had nibbles. I went to a similar event this May 6 months later and they had the same type of nibbles - crisp little spring vegetable rolls etc and unusually I kept going back for more, because they really tasted quite good to me. You know what its's like if you find an agreeable food out. You want to try more. Public eating is becoimng less of anightmare as I find more things acceptable. Unfortunately the following day I had a mouth ulcer which I think was caused by the crisp aspect of the product. Biotene gel though seemed to sooth it away in a day or so.
Are other members who can eat also finding that just a couple of crisp products cause ulcers easily? They were a no no for such a long time.
I think Biotene mouth gel is superb and keep some by the bed as I am sure many of you do.
Cat I suspected there was 50% chance tinnitus was related to treatment. I have had 2 ear infections since treatment and a few other ear problems during and in the 3 months after rads.
It does get on your nerves when trying to sleep and even prevents sleep. Is there any treatment for it?