Hi everyone, I am new here but I have been reading for sometime now. I am about 4 1/2 weeks out of 30 days of radiation. I had surgery in april, 1/2 my tongue removed. Replaced with flap. I also had 2 chemo treatments, cisplatin. It has and is a rough treatment. I held my weight through most of this, but last week was bad. I was on a 50 fentynal patch, 5mg oxycoden liquid, and ativan .5.. Well last monday I threw it all in the garbage. I was just sick of being in a fog, a daze. Plus I felt I was becoming addicted to it. Well, I never knew about the withdrawal. Monday night was bad. Vomitting, dizzy, insomnia, cold, hot,no enery etc..... I thought I was dying. I called doctor, said ride it out. This was Tuesday. Thursday, I called him again, into hospital I went. They gave me fluids, checked all vitals. Did blood and urine test. All was fine, dr said I was suffering some withdrawal.. My issue now is the weight I lost. I bet I lost 15 lbs in a week. Today, sunday is 6 days without the drugs. I have been able to eat and put the boost in my peg tube. I just hope the weight comes back... My last appointment with my RO, he said I looked great, do not use peg tube, everything in mouth, he wants peg out in 2 weeks.. I was sooo happy. I see him sept. 2nd, and now I am affraid he will say nope... Has this happened to anyone here? Today, I am 90 percent using mouth for food and the advil I take now. I use peg for a few cans of boost. Does the weight come back? Just last weekend I was driving, took kids school shopping, etc.. Did I mess it up by going b cold turkey? Thank you

ps..this web site is great. I know we are all in a fight, but this web site feels like a big family.

Hi , any help? Also, I noticed since I am eating, my tongue gets white. I brush some off, but it all will not comr off...whats is this from?

Welcome to OCF! The white on your tongue could be thrush. See your physician, it needs prescription medication to cure.

You are just starting your recovery phase. Weight gain will take a long time to happen. Every single day until at the very least you hit the one year post rads anniversary you will need to focus on your daily intake. Every single day you should be taking in at least 2500 calories and 48-64 oz of water. Even taking in 3000- 4000 calories daily is not too much. Your body has been thru the war and has burned up an incredible amount of fuel. This will continue for many months. AS complete recovery can take every bit of 2 full years after finishing rads.

By the time I finished rads, I had lost 65 pounds. During my recovery I began drinking gigantic chocolate peanut butter milkshakes. Some days I would drink 2 or 3 shakes plus attempting to eat and using the feeding tube. One day I sat down and calculated the calories per shake. I was shocked to see they had anywhere from 1200-2500 calories each. That meant some days I was taking in over 7000 calories and still I did not gain an ounce. This continued for several years. I finally began to put a few pounds back on about 5 years post rads. But to this day (Im almost 7 years post rads now) I struggle with my daily intake and maintaining my weight.

As far as pain goes, keep it under control. Its nothing to be ashamed of if you need to take pain meds. I understand not wanting to use them but its not one bit helpful to the patient if they are in pain. That just causes undue stress. Yes, the patch should have been stepped down. Your doc should have overseen this! Fentanyl is the strongest pain medicine available, it needs to be handled with care following directions exactly. There is 12.5, 25, 50 and 100mg patches. It takes about 24 hours to adjust from the patch being put on or taken off.

Do NOT rush to get rid of the feeding tube. Recovery is full of ups and downs with a few major setbacks here and there. So much better to have it and avoid malnutrition and dehydration! Those are not fun, it makes you feel so bad you think you may be dying. If you can go for 2 months without using the tube then its time to be rid of it. Until then, its a tool to help get you thru this phase.

Hang in there! Recovery is a long road. In a few weeks you will be doing so much better

Beermanx, don't do something like that again! LOL

Yes, you could have had a much worse outcome than you did. Luckily you were on a low dose of narcotics. In the beat down state you were, you risked things like a heart attack. The body can only take so much of a shock at once.

In the last year I consumed 4,000-5,000 calories a day and gained 25 lbs. After treatment I did the same for almost 18 months until I gained 25. Then it came pouring on. I had lost about 80 lbs both times. I hope this helps. Of course, it depends on your metabolism, diet and exercise.

Thanks guys. For a ome reason my doctor said lets eat evetything by mouth, lets get that tube out. I was shocked. I have been doing my swallowing exercises and eating by mouth and my neck hurts. Is this from using muscles that have not been used much? I also had a radical neck disecton, plus its only been 4 weeks since radiation. Could this be why I have some tightness and pain? Thanks

4 weeks out of treatment, no pain meds and eating everything by mouth? You are a ROCK STAR!!

Your neck has muscles and nerves were damaged from the surgery and the radiation. It will be like that for a few more weeks.

Yea, I ate eggs, potatoes, milkshakes, boost, yogurt, ice cream, etc in the past 4 days. All soft stuff. Now this week gonna try some other food. I use lots of water to get the food down, but that is better. Seems my taste is getting better... I was worried about my neck, but I guess im not done healing.. thanks

[quote]Did I mess it up by going b cold turkey?[/quote]Uh. yea. Like Uptown says, don't do that again. You seem to be doing just fine. Just keep getting calories as you can, hopefully by throat as that ensures fewer problems long term with swallowing. Plus that PEG will be history as soon as you can count enough calories going down the gullet.

Things take time so one day at a time. Eat, drink, and do control the pain. The radiation is very hard on the tissues that are radiated. It usually kills sufficient tissue to give you lifetime scarring under the skin that feels like tight and tough spots. That is normal. Good luck

Thank you. I notice I get a build up under my chin and around the adams apple. Is this normal? Will this cause some pain and discomfort? Thanks

Rads and surgery are major treatments so it is not unusual for there to be swelling. The rads also scar tissue under the surface and that creates long term lumps. The rad scarring generally does not cause pain but tightness is common so some stretching is needed to keep it stretched and loose.
As always, if anything seems odd for any period of time, ring the doctor to ensure it is nothing serious.

May patients will have what we call a "waddle" or a "turkey waddle" after undergoing the neck dissection and other treatments for OC. Its perfectly normal. You probably have some residual swelling there. In time it will go down a little but it probably will not completely disappear.

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Thank you all. I will do that christine, soon. Also, I helped my soon clean my pool filter, I almost passed out 2 times. Heart racing, I had to sit down 2 times. One thing, I quit all pain meds last week. Since then I have been going through major withdrawal. Im on day 7 no pain meds... it is and was bad.. is that all withdrawal problems too.

At the levels you were at, you should be past the withdrawal stage. About the only thing they would have prescribed would be benzodiazepines but that would have been for the first few days. Try drinking a lot of water and do some exercise like walking and running. Eat well. Rest. The only other options are rehab and you certainly are doing well enough overall that I wouldn't think that was be necessary. If you have any atavan or valium, that would take the edge off.

I am curious if your doctor was involved in your decision to stop the pain meds. They could have made it much easier by keeping a patch on a couple extra days and then going to 25 mcg/hr and going 5-7 days and you would have been done. I did almost what you did with 150 mcg/hr but i also spread it out over 2 weeks.

Your legs should be about the only thing bothering you. If it is worse than that, contact your doctor.

You sound like you may have gotten dehydrated. Do you check your blood pressure at home? That may be something you want to do in the future. It can sneak up, especially after treatment.

Thank you. Im better now. It may have been the heat, I have not done much since april. I did call my doctor, told me its all due to withdrawal and recovery. I just ate 1/2 burger and mashed potatoes. My neck still bothers me, sore and stiff by my adams apple. Not as bad since I moved around some today... im talking and eating by mouth pretty good, only 5 weeks out of treatments. I suppose I should be happy....u

oh yea , my legs are weak. I could not move last week.

Water is your new best friend. Drink a little extra till you get past the withdrawal stuff. You're really doing amazingly well at this point. Keep it up!

Thank you. I noticed I have lumps, or tissue on both cheeks inside of mouth .. this started since I am eating with mouth. They are in back, where I have no teeth. I think the spaces in my mouth could be causing this.

Any one else get bumps on inside of cheeks, back by molars? They showed up once I started to eat.. thanks

I had, have that, but not sure if it's the same as yours. Mine is caused by a combination of things, thickening of cheek from fibrosis, biting of gum, rubbing of sharp molar, and then sometimes abscesses, probably after getting infected. Sometimes teeth can be filed down by the dentist, if so is the cause, rinsing mouth with salted warm water, brushing after eating, to reduce chance of infection or further infection or a round of antibiotics if the doctor believes it is necessary. This has been ongoing for a few years, which is finally going to be able to be addressed by teeth extractions The required HBOT has also helped.

I hope this helps.

Thank you. Funny thing is , my back teeth were pulled. But I do chew my food back there, try anyways. There is no pain. Sometimes there is white on them, but that comes off. Could I be biting the sides of mouth while eating? Ty

Could be thrush, candida, which white plaque can be scraped off, or a co-combination with other conditions. Thrush is quite common, during, and even after treatment, which may need antifungals to properly treat. It's best to tell your doctor, and see what they say.

Thanks. I am only 4 1/2 weeks out of treatment. It just scares me. It was never there till I started eating and got the bad dry mouth at night. Ty

Dry mouth, lack of saliva, can contribute to oral thrush. Everyone has, needs candida in the body, and just gets out of control when the body can't balance it effectively due to a compromised immune system, radiation, medications, etc. Besides seeing your doctors to properly diagnose, reducing foods that feed thrush, avoiding other irritating things to the mouth, gums, throat, such as hot, spicy, acidic and sharp textured foods may help. For a while even milk irritated my mouth, sugar/lactic acid, so I avoided that.

I too have been drinking milk. They are not white now, its weird. Last week I went through pain med withdrawal. Lost some weight due to sickness. Started to eat saturday. Then these things show up...

Sounds quite normal in recovery...two steps forward, one to back, and the domino effect, but tell your doctors everything. You don't want to fall in any holes in the road to recovery that's difficult to get out of.

Thank you. So these bumps sound normal? Feels like im biting them if I dont be careful. Right now im taking aleve, that is all for pain. I see my doctor a week from now. Should I wait? It feels like its a gland on each side, and then little ones around the 2...ty

I'm not a doctor, and can't say what it is or how things will progress. Doesn't hurt to ask for an earlier appointment for peace of mind, and if I ever thought enough of something it usually needed evaluation from my doctors, and also told then why did you wait lol. Btw, milk feeds thrush too.

Good luck.

Ok, thanks. I have been reading that we have a gland on each side of the cheek. If you can feel them, then they are aggrivated from eating, biting, etc... or they could be blocked. I know my surgeon removed one of my salivory glands. Ty

You have three major salivary glands, parotid, submandibular, and sublingual. There are also hundreds of minor salivary glands in the mouth, and throat. It can be from what you say or one of many other things, even a recurrence, although not likely, but that's why it's important you should tell the doctor, and be evaluated by them instead of trying to figure it out by yourself. I wish I could say its nothing, even if I thought so, but would not. All the best.

Ok thanks again. I will talk to doctor. Thank u.

As Paul points out, any changes should be directed to your medical team at this point in your recovery. Even if you are totally freaked out and beg them to see you immediately, they will accommodate you. I can attest to that. They understand how different all this is and want to make sure there's nothing of concern as well. The good thing is they will explain things to help you calm down if it's nothing to worry about.

Thank u uptown. I go to UPMC pittsburgh cancer center. They have been great so far. I see 2 of them next week. I will call them soon, I do know the one is away. It seems with this dry mouth I am sucking or puloing my cheeks in towards my teeth are a. Oh well, thanks again..

Hi, I called my doctor, did not seem to concerned. He said if they are painfull, bleed, or white to call him back. He said he will see me tuesday. They serm to have gone down some. I just ate, they do not hurt at all. Thanks

ps.. he also asked if I am taking ibruprofin,. I told him I am taking aleve.

I used to get them all the time before treatment, even, when I took Feldene, a COX1 inhibitor. I never got them from COX2. It was an allergic reaction that only came after,2 weeks on Feldene. They told me decades ago to stay away from all COX inhibitors but I still took Vioxx and Celebrex with no problems.

Ty. I noticed a weird taste in mouth, like mettalic taste. I also looked, and I was wrong. Today I am only 4 weeks out of radiation. So my mouth is probably still healing.ii might be aggrevating it... thanks

Rinsing with a mixture of one cup warm water, 1 tsp baking soda and 1 tsp salt will help. I have to warn you the salt might burn your sensitive mouth. Its ok to cut back on it, just try really hard to get some manage using it with some in the mix. Do this at least 4 times per day. This is something many here have done to help with the mouth sores caused by chemo and rads.

Thanks I started that yesterday. See how it goes. This all seemed to start once I started eating and really doing my mouth exercises...

A neck dissection removes the pathways for lymph fluid. This is most likely the build up you're talking aboutl. Once you get a clean bill of health (post ct scan) then you might want to try and do lymphatic massage to clear out the fluid and build new pathways. Hugs and party on.

Thanks Cheryld. So, I was looking around the net. I know, never use google. What I did notice was there was something swolle under my tongue, plus on both sides of cheeks. I never knew the salivary glands are all there. I had one remved from surgery on one side of face, plus radiation probably ruined the others. Once I starteded eating, I think they got swollen. They are trying to work, but may be clogged. Anyways, I have doctor appnt tuesday. The nurse said it sounds like ruined salivary glands, dry mouth, and me eating and using the muscles again... thanks and I pray for all.