I was diagnosed with squamous cell cancer in my mouth on the upper right side of my gums. I went to an oral surgeon, who did the biopsy, and he called me on the phone and said I had cancer. I was shocked he'd say something like that over the phone. I was also displeased. So when I went to see him I had very little trust in him.

He explained how they were planning to remove it and it sounded horrible. I guess with my concern for the way he practiced medicine by calling me with that type of news, I didn't trust what he said. I was afraid of going through what he said and so I started praying and asking for a miracle.

I do believe in miracles, however I learned that we have to do our part. I didn't change my eating habits, exercise, or do anything to naturally to help me fight the cancer, and so it grew. Finally it seemed to spread and I wanted to go back to the doctor, but my insurance had changed and oral surgeons were not covered.

I went one year or so without seeing a doctor and when I finally did get new insurance, the entire roof of my mouth had a tumor. In addition I was told that my kidneys suffered from Chronic Kidney Disease, and I had to be put on dialysis. Because of the dialysis, I couldn't do chemo, I could only do radiation. I have had over 26 radiation treatments, but I've been very blessed. I haven't experienced any of the pains the doctor warned me about.

I do have dry mouth and sore lips. My teeth were not pulled before radiation causing them to decay and therefore making eating solid foods impossible. I lost around 15-20 lbs since September 06. Miraculously my kidneys recovered and my rad Dr. said I should get some lite doses of chemo to help the rad. I'm approaching the finally few rad sessions before my Dr. considers me to have a "full dose of rad". Now all of a sudden my throat is sore, I have headaches, and I vomitted yesterday. I'm ready to call off the rest of the rad sessions, seeing as I only have four more to go. But I'm not sure?

Does anyone have any comments?

You need to listen to your cancer docs. You have been very fortunate not to experience the adverse side effects most get. If you only have 4 left I (me personally) would not stop. Most people by now can barely swallow, are nauseated, are very weak, have mouth sores, are dehydrated and can barely talk. Your docs want to hit your cancer with everything they can the first time because they and you don't want to face a second time. Even if you stop now or you continue you still have a few weeks of side effects to deal with. Most people experience their worse side effects the 2 weeks post treatment.

Hang in there a few weeks longer.

I concur with David. You have been thru a lot and I think your Docs would stop treatment if they felt it would harm you more than help. I hope you can maybe insist on some stronger pain meds to get you thru this difficult time.Otherwise there are many survivors here who have been where you are and will offer some great advice so keep us informed and I wish you the best.
Mark D.

I'm no sure I understand why you were so upset that your Doctor told you the diagnosis over the phone? Especially that you were upset enough to not seek treatment for a year after?

The treatment can be horrible, but dying from this demon is not very palitable in my mind. You've been lucky to have had minimal effects from radiation, but to stop with 4 treatments remaining because it's starting to get uncomfortable now would be foolhardly. Trust your Doctors, get pain medication to deal with the pain issues and remember always that this disease will KILL you if ignored
Wayne

I must say that you are a very lucky person, having waited over a year before seeking treatment for your cancer. Although I did not have radiation, from what I have read, it would be very foolish of you to discontue treatment when you have only 4 more to go.

I feel that I must comment about your reaction to the original oral surgeon's method of telling you the results of your biopsy. I agree that it is always better to tell someone in person when the news is bad, but his motivation possibly was to get the word to you ASAP so that you would be able to start your treatment without delay. His approach however, in no way, was an indication of his ability to treat you.

I wish you luck and hope that you do decide to continue with the treatment plan.

Jerry

Delaying treatments from what seems a fear of them for a year, allowed your cancer to progress to a more advanced stage, one requiring more complex and more difficult treatments. That was a poor decision. Quitting before your treatments are done would be a second one. You are lucky after a years delay to be here at all, and your willingness to so quickly quit when it gets a little tough may have implications in whether or not you are around a year from now. You haven't been around these boards long enough to have watched the deadly toll this disease has taken on people. It seems lost on you that this disease is killing someone in the US every hour of every day 24/7/365. It is unforgiving of delay and more unforgiving of half measures in eradicating it. Did you expect that you would walk through radiation treatments without any side effects? These treatments are brutal, and so far you have been lucky enough to miss the really difficult process that most go through. Now for a little discomfort you seem ready to quit. Perhaps you should read some of the postings here from the many, many people who have struggled in pain and discomfort, emotional turmoil, addiction to opiate painkillers, disfiguring surgeries, inability to eat, speak, and more just to get through their treatments and survive. It might give you a more balanced perspective on how lucky you are... if you let this get away from you right now and it is still there or returns, because of a recurrence of it, or an incomplete treatment, you will have a very different vision of decision making - you won't have any decisions to make. Hard talk... you bet. But you only are going to get one chance to do this.

WOW, every posted message agreed with what my doctor tells me. I went to my rad Dr. on Tuesday and told him how I felt. He said the same as you all are saying that "its amazing that I'm just beginning to have these side effects, especially with this amount of radiation, also whether I continued or quit now, the recovery time & effects would be the same".

He said he'd adjust the beam away from my lips, which were beginning to crack painfully and that he'd like me to restart the following day. I went in on Wednesday and noticed a huge difference. I am thankful.

I really want to let everyone who posted advice, encouragement & "hard talk" that I truly appreciate it. I guess I needed a good talking to and I need to stop being a baby about the whole thing. It seems I'm not as knowledgable about this disease as I thought.

I've read the standard internet perspective of cancer & treatment, but I never encountered a real live board like this one. I am so thankful that I did, I wish I had found it sooner. I've been in the dark about a lot of things and really didn't have any one to talk to about it.

But now that I know you all are here, willing and able to help me, I will continue to read others stories, share my experiences (as I get them) and listen to sound advice. THANK YOU ALL SO MUCH!!!!!!!

Cooldown, Glad to see your anxiety reduced and now your more focused on what needs to be done. The great thing about this site is instant access to info from people that have been there. Cancer is an emotional and scientific topsy turvy ride for all of us. This site gives you a hug when you need one and more complex cancer info when needed."Now you don't have to ask your MALE doctor what does it feel like to be pregnant?
Good Luck to you Cooldown and I hope you fall on the scientific side to help offset the emotional crazies like myself.
Mark D.

Cooldown - I'm so glad you got all these wonderful comments and happy that you are doing better. My son also got the news over the phone about his cancer but the doctor did call me first to ask how his emotional state was and where he was and if he was with me. I told him that he had lunch with some friends and seemed in a good state. When I got to my son's house he told me the doctor had called with the news and I felt really badly that I had not been with him but I agree that it's important to know the news soon. And about the effects, my son had all the effects of Rad much sooner than usual and out of 30 total treatments, he has had to take two breaks from the radiation - a one week, and another week and a half break. He has 9 more to go but the doctor started aiming the beam differently and with new pain and nausea meds, he's been doing much better. Just stay in touch with this site and hang in there!

Thanks for all the encouragement. I'm wondering if anyone has any advice regarding dry mouth. Right now my mouth is SOOOOO dry and at night I barely get any sleep because my nose gets all stuffy and then I'm forced to breathe out my mouth which is already dry, then it becomes so dry that if I have to swallow or even move my tounge it feels like razors are in my throat. VERY PAINFUL. I drink lots of water and spend most of my nights attempting to water the dryness. I need help. Is there a decongestant or some type of nasal spray or something that can help me?

I have problems with stuffiness and dryness at night for different reasons, related to my surgery, and I have found that I must sleep more elevated than in the past, and I keep a spray bottle by my bed. I find that the mist moistens my mouth more throughly and more gently than drinking, and it doesn't wake me up as much. Also, I can't knock it over in the night and make a mess!

Regular use of nasal decongestant sprays will create a rebound situation that is worse than the original problem. I don't know what other radiation patients do about this problem. An oral decongestant, like Sudafed, might work for a while, and it doesn't create the rebound that the sprays do.

It is very frustrating not to be able to sleep. I am very sympathetic with you on that!

I keep a water bottle by my bed and whenever I wake I take a sip and then usually make a trip to the bathroom. Additionally, everytime I get up our cats (8) think it's feeding time so I have to listen to their disappointment as well. I do this 4 to 5 times a night. I was never one that needed a whole lot of sleep but this is pushing it.

As I have said many times before, the dry mouth thing is the worse side effect I have to deal with and I haven't seen hardly any improvement. My wife called me over to the restaurant the other night to meet a 10 yr survivor of oral cancer. She thought that it would make me feel better, bless her heart. But when I went to his table, the first thing I noticed was a water bottle strapped around his neck. I hope my Tx leaves me differently but he has outwardly adjusted to his permanent dry mouth fine.

Some folks have had success using a humidifier by the bed at night, but it never did much for me. When I get up at night with dry mouth I use a little of the Biotene oral gel and it works pretty well for a while.


Danny G.

Cooldown;
I have had some luck with the humidifier and keeping my head elevated so it could not hurt to try it. My RO recommended oral decongestants but they have not seemed to be much help for me. As August and David have posted it seems the water bottle has certainly become a "way of life".

Best of Luck,

Steve

I live in the Tampa Bay area. The whole region is a big humidifier. Today will reach in the 80's with 80% humidity....my kind of December!

The saliva thing seems to vary from person to person and also the location of the cancer. David had laryngeal cancer and he is 16 months out of treatment. He has about 98% of his saliva back. He is a public speaker and I have to remind him to drink when he is working or he drops words. But he is able to eat bread and crackers and can pretty much eat anything he wants with just a little water to drink.

We did notice last year that when we turned the ehat on and the humidity dropped in the house that he had soem problems with dropping words due to the dryness, but it got better quickly. We also talked to a vocal reconstruction specialist and she said to avoid caffeine and antihistamines.

While David was in treatment, he slept in a recliner. His radiation oncologist pretty much insisted on it. It worked great. Thre is no way he would ahve been able to endure the Attack of the Sticky Mucous if he had been lying down.

David still has allergy problems and it is hard not to be able to take anithistamines. He has a prescription for Singulair and a prescripton for MaxifedG, which is a pill form of the same stuff that is in Robitussen. But they really dont' take care of the allergy problems...especially when the farmer next door is plowing the pasture and kicking up tons of dust.

It took quite awhile after my treatment, but I eventually got back a surprising amount of salivary function -- especially when you consider that there wasn't IMRT or amifostine available when I was treated. For me, it takes a combination of several things:

1. Sleeping with my head somewhat elevated -- using two pillows, one of which has memory foam so it gives my neck some extra support.
2. Taking Salagen 3x a day every day (which I've been doing for almost 16 years).
3. Sleeping on one side or the other, not my back.
4. Rinsing my mouth with Biotene mouthwash right before going to bed.

For a good many years now, I've been able to get through the night without having to get up at all for water, and most days I don't have to have a water bottle handy all the time.

Cathy

It is so amazing to me that so many people are sharing or have shared the same experiences that I'm going thru. Not to mention the recliner idea. I've been shopping around for one and didn't really know if it would help or not but now I know that its a good idea. The elevation idea, I have also done.

Its so wonderful to know that I'm not alone. I feel better already. I also purchased some Biotene mouthwash and put it into a small spray bottle so that if I'm some place where water bottles aren't premitted, I can spray and go.

There must be an end to this madness. LOL
But if not, at least I'm not alone. Thanks for being there for me.

there is also a sensodyne spray called Oasis, that is a temporary fix, Erik carries it in his pocket and keeps it by his bed, although he says that water is really the best. When Erik got stuffy, and mucousy(not really a word) he took Tussin, although I dont know that it helped the dry mouth, but thats when the spray helped.
Jennie

My son found that a "warm air humidifier" works better for him than the cool air kind. We got one for under $9 at Walgreen's. He also is having good luck with the Stoppers4Dry mouth (around $5) in helping him to get some sleep at night.

Cooldown
I did not care for my first doctors Bedside manners, but my second opinion was 2 days later,
the next day was surgery.
I thought about stoping at 24 a man in the lobby told me while I was waiting why would you go thru, all this and stop now. If you did stop and the Cancer did come back, would you be able to tell your family you did all you could do to fight this? That advise alone made me go back finish my last 9 treatments. I started out at 210lbs, because of being stuborn I did not use the food tube, when it was all over I lost 110LBS I had dry mouth bad for 5 months then one of my syliva glands did come back. If I would of listen to my doctors advise I would not have lost all that weight
Im so glad you found this board.