Hi,
Does anyone out there have any advice for me? The treatment (chemo and rad) for tonsillar scc with neck mets is all over and actualy O feel fine if a little sore! The doc has sort of just left me to ponder the remaining lump( now very small)and to wait and see if it comes back! Considering there was so much of a delay with diagnosis intially I'm reluctant to wait for anything although obviosly no choice here!
Can anyone explain all this salive production - i thought a dry mouth was the usual side-effect of rad to the throat? I have copious amounts of thick saliva,(together with all the green gunge)which threatens to choke me constantly.Being awake 24/7 to spit it out is so tiring and I carry a dentist's suction pump around to get rid of the worst but can anyone say how long it might continue for? When does the dry bit start?
I am expecting symptoms to worsen but neck skin is healing fast and each day the mouth is a little better, however i still bless my peg tube! I understand my neck will swell up and i'll get the turkey - when does that happen? (I didn't have surgery). Do i just wait for a 3 month scan and hope for the best or is there something i should be asking for?( seeing as the tonsillar lesions weren't visible anyway)
Any info would be very welcome,
Good luck to you all out there,
best wishes, Farnces

Hello, Frances. I am so glad to hear that you are feeling pretty good, as I did too, and I know what a relief that is. And you will feel better every single day! Now, about the thick saliva, which I likened to wallpaper paste, it will be with you for a while. Mine didn't stop for 21 days -- I counted. I hear you about sleeping problems. I partially solved this by rolling up strips of gauze and putting them in the "gutters" of my mouth. This allowed me to sleep for a couple of hours in a reclining position. I have a huge pillow whose acquisition I cannot remember that came in very handy for this, but some rolled up blankets would work too. I also used these gauze rolls when I went out in public. Many of us have found that Puffs brand tissues are the very best for wiping out one's mouth -- both soft and strong, and no, I do not own stock in the company. If you do not have a turkey wattle now, you will not get one. In my case at least, that was a result of the surgery, and thankfully, has at last disappeared. You are ahead of the game there. The dry mouth will begin when the thick saliva ends. If you had standard radiation, that will pretty much be the state of things. If you had IMRT, your saliva will gradually return. I had the surgery, so I cannot authoritatively speak on this subject, but I am given to understand that the radiation continues to work after treatment has ended, so that may be what your doctors are waiting for. In other words, any lump might continue to shrink. That said, you must be your own strong advocate and ask for explanations. If you feel the need for a sooner check, make an appointment! Remember, those doctors work for you. And again, congratulations on feeling relatively good at treatment end.
Joanna

Hi Frances,
Welcome to the board. When I had radiation 5 + years ago, they put me on a drug called 'Guianfenex LA' (sp- not certain of the order of those vowels) to help the thick strangling mucous problem. I think it helped. I also was taking Salagen 3 times to a day to help retain my saliva production. This probably also helped to thin the mucous out some.

There is also an herb, Fenugreek, that comes in capsule form that is supposed to reduce mucous production. I started taking it two years ago after I got a cold and have taken it ever since. It also aids digestion. Natures Way makes a capsule version and I sure others do also. Didn't take it until long after after radiation so don't know if it would help.

Hope it all clears up soon.

Frances, congratulations on completing the treatment without very severe suffering. My case is very similar to you and me too didn't have any surgery. The treatment still has effect on shrinking your tumors and for me I had my scanning two months post treatment and before that I just visited my oncologist for general check up and pain medicine and gargle. I took sleeping pills at night. FOr the thick saliva, it would go away soon gradually and then you would start feeling the dry mouth. Not now!I would say there is nothing really you can do but just trust your doctors for their professional advice.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Just out of curiosity - does anyone know, on average - how long radiation continues to work after you have completed all your sessions? I know it does continue to work afterwards - but I wasn't sure if that's for 1 month afterwards or 2 or what? Is chemo the same way? Just wondering. Thanks

The doctors have told me that radiation effects continue for 2 full weeks after cessation of treatment. I am 8 days out and the effects are still nasty and aren't letting up -but not getting dramatically worse either.

Thanks Gary for the info. That surprised me - I thought the effects would last much longer. So I guess it's safe to assume if my husband's treatment with radiation ended on 11/29/02 - there isn't any more radiation therapy working in his body. He sure seems to feel a lot of it's side-effects yet - but this is probably more-so from the surgery he had on 2/6/03. Anyways - thanks again for the information - and I hope things get better for you real soon!! Take care.

Hi Donnajean,
The radiation isn't working any more but some side effects take longer to resolve. Damaged red blood cells take 120 days to replace themselves. I don't know about platelets. Mouth/tongue sores seem to heal at their own rates also, probably dependent on tissue type and location. The docs told me it'll be 4 months until my immune system is back on track. My last blood test revealed that I am borderline anemic which is common when they irradiate the carotids. Today seemed a little better than yesterday - it takes a lot of patience.

Donnajean,

I would think the after effects of chemo would depend on the person. Just as so many of us responded differently to radiation.
I know I never really came back totally before my current situation cropped up. But maybe that's why??
I'd also believe from what I've read the different chemo drugs have different effects on people. No one yet has given me any specifics on how long the side effects of my current chemo will last. I just added it to my list for questions tomorrow at my appointment. We are to discuss whether we'll continue the carbo/taxol combination or just the investigational drug. I am of mixed feelings, so I almost want the doctor to take the decision out of my hands. (and he probably will!!!)

You take care,
Dinah

Dinah - you are in tough situation, and quite frankly, I would probably let the doctor choose too. One thing for certain is - you are one strong lady, and I admire your courage and optimism in dealing with all this. My thoughts are with you - and let us know what you and the doctor have decided to do.
Gary - thanks for the info. As you mentioned - the side effects of the radiation can definitely linger. My husband still has some mouth sores - and the dry mouth - but we were told that was irreversible. Once the salivary glands are damaged - there's nothing that can be done to repair that. Not to mention - healing may be longer for my husband due to the fact he has other ailments such as type II diabetes. Patience is not always an easy thing. Most days we have learned to handle and deal with things as they come along - but sometimes there are days we just can't handle it at all. Oh well - that's life I guess.
Anyways - best wishes and take care always.

Dear All,
Many thanks for the advice and support from you all, it's very much appreciated.
I guess patience is the one lesson we all have to learn here, the hardest one anyway!
Not sure why the burns to skin on outside of neck are healing so rapidly , it's a miracle every day yet the inside of throat seems to be worsening and is getting more intense, painwise.Still nothing by mouth, keep on blessing the peg tube!
I tried the rolls of gauze - thanks they work a treat until they got stuck onto lesions and didn't want to pull off very easily! Will persist with less gauze!
I've been told that aloe vera gel is good for rinsing/drinking to heal the mouth, also homeopathic remedy Belladonna for burns - anyone tried? My real life-saver to date has been the dentist's suction pump to clear mouth frequently - a little unsocial as noisy but completely portable and saves spitoon!
Wishing you all the best,
Frances

That medication they gave me is spelled 'Guaifenex LA'. Don't know why but I have a mental block about spelling that prescription name.

Hi Frances, Just to let you know - I too was amazed how quickly the burns to my husband's neck healed after radiation - in fact it seemed like it healed "overnight" considering how raw and blistered his skin/neck looked as he was going through this. What really helped for him was the Carrington Moisture Barrier Cream - a real GODSEND! He (my husband) was literally at some moments close to tears from the pain of the burn (and being a combat Marine soldier in Vietnam - that's something he tries NEVER to show me!) the pain was unreal. But as soon as I applied the cream - it was a miracle. If he didn't have that - I don't know what he would have done. The gauze - like you mentioned, tends to stick, so oftentimes - he would not use that, but it's so important to keep the neck clean above all - and there was a special cleansing spray that they gave him that I would use before putting on the cream, and the gauze when necessary. As far as the Belladonna - never tried that. I did hear about Aloe Vera as being beneficial to help mouth sores - but he never tried that either. He did try using Vitamin E (broke open a capsule) and applied that to coat the inside of his mouth for the mouth sores - but that wasn't all that great for him. And to address the issue about how even though the neck is healing but the throat pain seems to be getting worse - let me tell you - that seems to be par for the course. Same way for my husband. I'm sure there are many people here who will tell you that seems to be fairly "normal" - a lot is happening inside the mouth with the radiation hitting various fields - and it will without doubt cause pain and sensitivity. My husband has a whole arsenol of pain meds he takes - and that was a lifesaver too. The best advice I can give is to take one day at a time...and do the best you can with it. Hang in there and remember, like you said..............patience is the "lesson" to be learned here. But in the meantime, you will find many good "tutors" here to help along with that. Good luck and let us know how things go.