Hi Everyone!
My name is Caryn. After a FNA biopsy on a mass on my left neck, I was diagnosed with a metastatic squamous cell carcinoma to the lymph node, with possible sites of origin being the mouth, throat, tonsils or lungs. My primary immediately sent me for a lung scan which came back normal. After a head and neck scan, it was determined that I have Stage III cancer of the left tonsil and one lymph node. I have since undergone chemotherapy (5FU) fusion and two 4 1/2 hours chemo treatments of Carboplatin and Taxol. I am now undergoing 7 weeks of radiation with chemo every Wednesday for six of the seven weeks.
After 12 rad treatments I stopped all treatments for a week to recover. I now have 12 treatments to go with one more chemo - my radiologist has stopped all treatments again as I cannot swallow, or talk or gargle with the magic mouthwash. I am forever gagging and throwing up blood, which scares me. I don't want to go back into the hospital and wonder if anyone is/has experienced these same symptoms.
Also, what has everyone been using to ease the burns on neck and throat?
Thanks for all your suggestions!

Related to coughing up blood don't let that freak you out. Remember that the radiation treatments are traumatising the interior of your mouth and throat to the max. I was spitting up bloody pieces of tissue towards the end of my treatments daily. As to what people have been using for burns I will let others post about that since since I went through all this 7 years ago, things have changed and improved significantly.

Hello Caryn and welcome to the forum. When my husband, Tom, was going through this almost 3 years ago, his radiation doc gave him several things throughout treatment. The one that seemed to help the most was Aquaphor, which is available over the counter. It is a thick ointment, and very soothing. We also applied cool packs, not icepacks as they were too cold, but a cold washcloth eased some of his discomfort.

Tom also experienced what you and Brian are describing, and I can understand how that would be frightening. Are you able to eat OK and have you considered getting a PEG tube for the short term to give your throat a rest? You have definitely come to the right place here at the OCF for information and support. I'll keep you in my thoughts.
Charlotte

I get all my food and nutrients from TPN which is administered through my portacath. I understand it is going to take awhile for my throat and neck to heal, but I still have 12 treatments to go. Has anybody quit treatments before they were done? That is all that I can think of --- I don't want to give up but I can't help but think that I've already died and went to hell. IS THIS PAIN AND MUCUS EVER GOING TO GO AWAY!
Stupid question... but does anybody know how we dispose of all the dead cells that chemo and the radiation treatments are causing?

Caryn,
In answer to your question, "Is this pain and mucous ever going to go away!" - the answer is YES!
My husband is 3+ years post treatment with a similar diagnosis and treatment to yours and enjoying life to the max these days.

This WILL pass. Don't give up. It will get better.

Anita

Hi Caryn,
To give you further support, I can tell you that the pain and mucus will certainly go away, sooner or later. You should be now at the peak of your suffering during treatment and as others have said, spitting blood is very normal during and even after treatment. I remember spitting blood even several months after treatment occasionally. I can't tell you if anyone quits treatment but for me I never thought of quitting and in fact, I didn't have any break throughout. To me, the sooner I finished, the better. Of course, if you really can't stand the pain and all the discomfort, with the doctor's consent, you can take a break but please don't ever think of giving up. There must be solutions to your problems of swallowing (like getting a feeding tube)and pain management.Don't worry about losing your voice temporarily and I am sure you will regain your voice some time after your treatment as many of us here did.
Never give up,
Karen

Thanks for all your support. I tend to feel sorry for myself and I let that get the better of me the last time I wrote in. I apologize for this temporary setback, I am usually a very upbeat and positive person.

Hi Caryn, don't apologize this is a very difficult time for you and everyone gets discouraged at some point. Please don't stop the treatments, but it does sound like you need better pain control and symptom management. The fentanyl patch is very effective for pain if they haven't given you that ask for it. It is started at 25 or 50 and increased by the doctor until they find the right dose for you. Also ask them if Neuronton would help you as mouth pain is often neurogenic in nature. It worked well for Jack in combination with the fentanyl patch. The moutwash didn't help Jack during his radiation but lidocaine gel applied with a q-tip to the mouth sores gave temporary relief. Dead cells are flushed from your body through hydration, and 2-3 quarts of water is recommended. Are they also doing that through your port? It's in addition to the TPN. Is there a reason they didn't put a peg tube in?
Good luck and keep going, this will get better.
Regards JoAnne

HI,
I used a cream called Biafine which worked much better than the Aquaphor which didn't seem to help at all. I was recently told they now make it in a liquid form but my pharmacy still had some in cream form. This is RX so ask the RO for a script. Hope it helps.

Take care,
Eilen

Caryn.

For the burns on the skin, I used both Biafine and Aquaphor. Biafine 3x a day for the radiation effects, and the Aquafor (2x a day) for the toasted skin. It worked for me, and kept the crackling skin under control, along with the redness.

Regarding the mouth/throat issues, I did experience that too, but not that bad. I gargled / rinsed my mouth out with warm water, salt and baking soda 5x a day. I would alternate between oral-gel (a prescription) and the magic mouthwash. Each one had its plus

Hello Caryn,
All of these things are temporary set backs of which you can handle all of them and everyone is right in saying things will get back to normal, I am not quite 7 months removed from where you are now, so the memories are pretty recent but seem like a million lifetimes ago. Yes my dear you are in hell at the moment, you've joined our exclusive club, not every one gets to go to hell and return. Hang in there my dear all will be cool in the end.
lenny

Caryn: Hang in there! It WILL get better! I had radiation for 7 weeks and chemo for several months. Ended up in the hospital twice for two weeks each time. I was brought down to the lowest, lowest point, but now I'm doing okay. My last treatment was January 17th, so this is all very fresh in my mind.

It IS hell! I ended up with a feeding tube, and could not eat for 6 months. It was really hard. Food is everywhere you look - on TV, in magazines, etc. I totally missed Thanksgiving and Christmas.

I also could not talk -- had a whiteboard on which I would write comments to my family.

It's so natural to feel sorry for yourself. Trust me, I did, and still do. But I found that it was good to do once in awhile. I would scream and cry, and then the next day I would come back fighting. It's impossible to be positive all the time.

One thing that helped me -- try to find good things from the cancer, if that's possible. For example, my relationship with my husband, family and friends became much stronger. My faith became much stronger. I appreciated life much more. Etc.

But again, if none of that works -- cry a little!

Good luck!