Hi,

I finished my 25 RT treatment and 5 Chemo treatment last week Friday ( Nov 16th,2018) on Sunday I was hospitalized due to high fever and a severe burn on my neck.
After 4 days in the hospital and all treatments being stopped, I am now wondering what is next? I have technically one more week left but I don't know if i can take it.

PS. My tumour( floor of the mouth was already removed Sept 5th. and radiation and chemo started 6 weeks after. I was stage 4 with 3 positive lymph nodes and one lymph node with external nerve spread.
Anyone here has any experience with this kind of situation? any advice is appreciated

What I did at the time ... curl up on the floor and cry a lot (gently). And consider quitting. But then I kept on going. However, my situation wasn't as serious as yours. I probably could have stopped, since we got the whole thing surgically anyway. You had lymph node spread ... that's a lot scarier.

Are you on painkillers? That may seem obvious but ... my doctors didn't actually give me any painkillers till I broke down completely in their office towards the latter end of treatment. And no one told me I could ask. I didn't TAKE anything at home, because I had the stupid feeding tube and wasn't sure what could go in it. So ... it got pretty bad. So if you aren't already on strong painkillers and on a treatment regimen for your neck (I'm guessing that's where your burn is?) ... please insist on one. It does make a lot of difference.

And ... very gentle ((hugs)), whatever you choose to do.

Do you have the special mouthwash (Magic Mouthwash or whatever it goes by in your area)? Lidocaine plus various ingredients, depending on the formulation in each place. That can help with the mouth. Even if you're not eating by mouth, it does numb for a bit. (Again, you may already have this, but worth mentioning in case you don't.)

(ETA: if you're just rinsing and not swallowing with it, you can use it fairly frequently... don't be afraid to use what you need!)

And I am REALLY glad you are already on the Fentanyl and other stuff ... I wish it would do more for you, but it does help!

((hugs))

It will get better. It will get better. It will get better. (Keep telling yourself this. It's true.)

Towards the end of rads almost all patients being to struggle. Their sense of taste is shot, most can barely swallow, painful mouth sores, open oozing radiation burns on the neck, losing significant weight along with muscle, stamina and strength are just some of the problems OC patients have towards the end of rads. I tried to quit too but my son and nurse refused to even discuss it. I was told I MUST continue rads right thru the end no matter what. My son saids he would carry me into rads and my nurse went right along with him. I had lost my voice and was dehydrated even with getting extra hydration a few times a week which landed me being admitted into the hospital for a few days. I completely understand every single aspect of what you are going thru and how difficult rads and all the horrible side effects can be. The best person to discuss your concerns with is your doctor. They should be able to explain in detail what impact skipping some of your radiation treatments would have on the overall odds of eliminating the cancer. One important thing Ive picked up from interacting with so many OC patients over the years is the better patients can do with their intake, the easier treatments will be for them. If you can take in at least 2500 calories and 48-64 oz of water every single day from now until you hit your first year post rads, it should help to make everything easier. If you know you arent taking in enough fluids ask your doc to give you a prescription for extra hydration. After getting a couple bags of fluids I know it will help perk you right up where you should notice a huge difference in how you feel. Of course this decision is ultimately yours to make but please think it over long and hard before making any change to your treatment plan. Even though rads for OC is probably one of the hardest things a cancer patient can go thru, it really is a matter of life or death.

Stop back frequently, read posts and learn from the hundreds of topics on the main OCF site. Know you are not alone with this! Many others here have been in your shoes, myself included. We know how hard rads can be. We're here to lean on when you need to. Best wishes with everything!!!

If your daughter is going with you to advocate for you she may want to spend some time reading both here and on the main OCF site so she has a better idea of what she should expect. Theres hundreds of pages of info she can read with links to go into great detail for those who are determined to find out every single detail.

Rads missed will be tacked onto the end of treatments. At least thats what happened when I missed one and from what others here have said. There are very specific formulas and flow charts doctors in the US use to determine what course of action works best for what patients. If a patient does not complete their treatments its unlikely the cancer will be eliminated. Recurrences can and do happen when treatments are not finished and unfortunately recurrences seem to move faster than the original tumors do (just my opinion).

Please think every single thing over and take your time to decide if you want to continue. Ive been here for 11.5 years and been thru recurrences myself, I cant think of a single case where the patient quit rads and survived for any great length of time. Cancer is an absolutely horrible disease that comes with horrendous treatments and side effects for those with OC. We have been there ourselves and understand how you feel and how much treatments do a number on patients. The better the patients intake and hydration, the easier it will be on them.

Main OCF Site... Understanding Oral Cancer