Hi, my name is Delia and my fiancee was diagnosed with SCC stage IV of the Larnyx on Janurary 16, 2006. He had a horse voice for 4 years and we never got it checked- until his voice started cutting out. He was diagnosed with a aggressive and malignant SCC and it was stage IV.
He had a PEG tube put in before his treatment and he has only 2 weeks of radiation left. He has completed 5 weeks of radiation and 2 cycles of chemotherapy. He is so swollen that they dont think that they are going to do the 3rd round of chemo.
He is in so much pain and is constantly throwing up mucus. Nothing works for the mucus- only nasal spray helps a little. His neck looks like it was burnt by fire- but that means its working right? He has a Kangaroo pump because his stomach wont digest with the mucus.

I love him so much and am so scared. I dont want him to be afraid. It is crunch time (only 2 weeks left). I just found this site and I am thankful for that.

Hi Delia.
they can do a better job of managing his pain for starters. What is he currently taking?

I only had 2 chemos as well - I responded so poorly (or well as the case may be) to the second (Cisplatin) infusion that they decided to drop the third. Some have had to take a break to recover a little better finishing up. It is a pretty brutal treatment and hard to watch for caregivers. Just try to take it one day at a time and roll with the punches. He could get very cranky and angry and take it out on you but it's not personal believe me. Plus there can be additional problems and complications with constipation, thrush, infections and aspiration. It is vital that he complete the radiation treatment. It is a hard road - but a survivable one.

I hate to tell you this but the radiation effects actually continue to get worse until 2-3 weeks post Tx so don't get your expectations up that he will improve as soon as radiation is over. His condition sounds fairly normal for this phase of his treatment so don't freak out too badly.

There are meds to help with the mucous a little also like Guaifen.

There are also steroidal creams and moisterizers for the neck burns as well but MAKE SURE that his his neck is clean and dry prior to actual radiation treatments or it could act as a "bolus" and exacerbate the radiation effects to the skin. Ask the techs or nurses for some "Radiacare" -they should have some samples of it. Aloe Vera works pretty well also.

Was he a smoker?

delia,First of all a big welcome to you and your fiance. You have found the best place to be, although my experience is different from yours you are sure to find someone her who will be of infinate help to you, as for me I will be one of the many cheerleaders here encourageing you to oush forward, don't look back, lookahead because there IS light at the end of the tunnel, I am not that far ahead of you and have been experiencing my own little set backs but all in stride the people on the forum will not let you down, happy to have you hear to bad it is under such shitty circumstances. welcome
always lenny

Gary and Lenny-
Thank you for the words of encourgements. Right now he is taking Fentnal patch and oxycodon for pain and he is taking lerazapram for anxiety. He has tried magic mouth wash and numerous other rinses for pain, but they dont help and he ends up throwing up.
He now has one week and two days left of radiation and he is throwing up. Is this a side effect that you both have expierenced? Is there anything that I can do for him? It seams that especially right after treatment he feels sick to his stomach.
Yes he smoked one to one and a half packs of Newports per day.
We have both quit. How could I say how much I cared for him and loved him if I couldnt show it by quitting with him?
I am relieved to hear that you,Gary, did not have the third round of chemotherapy, at least I know that it itsnt abnormal.
How are you both doing now? How many radiation treatments did you recieve? Were you smokers as well?
Thank you so much for your support- I hope you know how much it means to me.

Delia, I was a big fan of the magic mouthwash, not for pain, but it coated my mouth and gave me comfort. I was a big "heaver" midway thru my treatment. For the most part it was because of all that mucous and flem. Even during chemo, I always chose a private room if it was available with a bed in it. The nurses were understanding when I emptied my stomach into the trash cans or the sink.

He's almost at the end of treatment. It's a relief when treatment is over, but it takes alot to recover from. Soon the throwing up part will be over. Gary is right though. All the effects from treatment don't go away after it's over. It takes a few months to heal up and get better, but it gradually will come.

Jen

Delia & Charlie,
I only smoked for a few years and quit in the early 70's. I was exposed to a lot of second smoke for many years performing in bars and nightclubs. I am trying to gather up real stories to convince my step kids as to the risks of smoking.

I am 3+ years post Tx and doing very well. Back to normal schedule and eating anything I want. Very few side effect issues at this point. Due to advanced nature of my cancer I received the entire allowable lifetime radiation dose with the "boost".

If he is rinsing with "pink magic" make sure he doesn't swallow it (swish & spit). It can mask the gag reflex and that might result in aspiration which can lead to pneumonia, as well as more nausea.

I had pretty much the same experience. Timing is everything. Try to get the heavy mucous out of the throat before attempting to swallow anything. I used to take a morphine or 2 in addition to the "pink magic" (1/2 hour in advance of attempting to swallow). The pink magic lasts about 15 minutes or so.

I read somewhere that actually 2 Cisplatin treatments were actually optimal but I haven't been able to find that report again so take it for what is worth. I was sick so often I polished my teeth like glass from the stomach acid. I lived for quite a while on the bathroom floor.

Congratulations on both quitting. That is a very courageous act.

Charlie and delia,
Yes I was a smoker and a very heavy smoker at that. I smoked at least two packs a day for 35 years and never tried to quit, huge mistake. The irony of it is that I started using the patch about two weeks before my diagnosis. Things are fine now, although I must say the two weeks after radiation were the roughest. I did vomit alot but it seemed to be more of a gagging reflex because of taste, swallowing and thick mucous issues. Those things have mostly cleared up, I still have a bit of an issue with swallowing because of scar tissue from surgery. My biggest problem today is I have been having issues with some of my teeth and no one wants to proceed to quickly for fear of ORN, so I sit here in pain, in fact i have another CAT scan in about an hour, they want to make sure that it is not something else before they proceed with any dental work, I wish it all would hurry because tooth pain is maybe worse than anything that I experienced with radiation and surgery. Hang in there Charlie and Delia it does get better.
Always lenny

Delia,
This is lenny again , to answer some of your questions, I found that rinsing with salt water helped as did using crest non alcohol mouth wash. Is charlie having issues with dry mouth? if not he may have in the near future I found that the hard candy "lemonheads" work very well for this.
I had 33 radiation (IMRT) treatments that ended 12/16/05, yes my neck was burnt black but oddly enough not sore at all it was like dead skin after a very good tan and it healed very quickly and nicely, It was pretty much healed by the time I had neck surgery 3 1/2 weeks later. I did have three rounds of chemo (cisplatin) and had no side effects at all from chemo. I hope that this info helps a bit more.
always lenny

Thank you to everyone!
Well, the doctor said no to the 3rd dose of ciplatin. He said that he got 90% of the benefit and to push the other 10% would be life threatening. He is so swollen.
I found out yesterday that he is on the highest amount of pain meds that the insurance sees reasonable (like they know) and the funny thing is,,,they dont work.
One week left and then the waiting to find out if this worked! Such anxiety and fear!!
For all of you who have endured this- I look up to you all as heros and as an inspiriation to others.

wow. I'm always learning something new here although often it's something disturbing. I had no idea an insurance company could or would say what a "reasonable" dose of pain medication would be. I thought that was a decision only up to doctor treating the patient. That seems just inhuman for there to be some sort of blanket policy about what an insurace company will cover in terms of pain relief--how on earth WOULD they know, especially when people react so differently to meds and experience pain so differently?

Hang in there Charlie and Delia (and good on you for quitting smoking!)

Nelie

Delia and Charlie,

I have NEVER heard of an insurance company having any right to deny an insured pain meds. You MUST speak to the doctors and nurses about this. Keep asking until you find someone that will give Charlie what he needs.

Good luck.

Jerry

I must say I agree with Nelie that the insurance company would have the audacity to tell anyone how much pain meds they could have. I would contact a lawyer and sue their asses for all their worth. Talk about a claim for pain and suffering - I am sure you could get a lawyer to take it pro bono. Who is your insurer - we need to know this!?!?!!? DO they have an omsbudsman? Pain meds aren't all that expensive I might add. The high ticket drugs are the Cisplatin and the anti-emetic SRI types like Zofran.

The salt water rinse is a great idea unless you have open sores then your pain threshold will go right through the roof so be careful -proceed with caution. Club soda may be a little easier to take.

Thank you for the suggestions! I have new news to report- his 6 day pain medicine, Oxydose is covered by his insurance for 30 days (They only give .25 ml, and Charlie takes .75ml every 4 hours) But on the plus side- I have a phone number where the doctor can call and override this (hopefully). He has done this once. The insurance Company is Horizon Blue Cross and Blue Shield of NJ.
Charlie has one more week of radiation treatment. GOOD NEWS- the doctor said that his tumor has shrunk and his right vocal cord (which was paralized because of the cancer) seems to be moving when they scoped him on Friday.
I keep on praying!

Glad to hear the good news about the tumor shrinking and the vocal cord moving.

Not surprised that BC/BS is the carrier giving you a hard time. Keep fighting them. It works...I know this as a patient and as a provider.

Jerry

I had to threaten to sue BC to get any coverage at all, and the process of dealing with them was one of constant aggrivation. Here in CA the attorney general is looking to to their practices as we speak to see if they are denying payments, coverage, that they have contracted to provide, or if there are other improprieties. Of course now that any of us has had cancer, we are stuck with the carrier that we have love them or hate them, because as cancer survivors, no one new will touch us with a ten foot pole.

Well yesterday was quite the trip. HBCBS only approved 2 ml of the oxydose when it should be over double that (4.5)! So I was on the phone with one of the nurses (who is wonderful) for over 30 minutes trying to get an over ride. Finally they did!
Other then that- Charlies neck burns have cleared up to the pink tissue (but he picks at it).
I hope everyone is doing really well!!!

Try Biafine on the neck burns and no picking.

I'm not happy to hearing about these problems with BC/BS of NJ since they are my tertiary carrier and will be my secondary next year. Is he a State employee? I had a friend, state employee, who was on megadoses of Oxycontin etc. for over a year and I don't think there was ever a problem with BC/BS covering it.

Take care,
Eileen

Eileen:
As long as you work with them and have the doctors override their decision...it will work out. Even though we have had these problems- there is always a solution.
No, he isnt a state employee.
Good Luck to you!

Delia,

What a difference in Charlie over the past week! It's so good to hear how well he is doing. Way to go both of you...him for fighting through this, and you for fighting BC.

Best of luck to both of you.

Jennifer