I hope this doesnt ramble much but I have to vent and see if anyone understands what my husband is experiencing. Noaopharynx(nasal cavity) RARE cancer 35 rads, 3 mega cisplatin, peg tube, picc. THen the doctor wanted to continue the chemo treatment(cisplatin and 5FU) because he did so well with all of the above treatment.

Last week he had the first dose of cisplatin and the 5FU via the pump. After several mishaps with our chemo doctor I changed doctors on Friday but stayed with the same chemo practice.

Over the weekend my husbands mouth started with the sores and I called the doctor for antibiotics. He hates the ER so I managed his pain at home and took him to the chemo office this morning for fluids and to get the doctor to check his mouth, throat and chest pain.

It took 90 minutes to get someone to look at his mouth and when the doctor saw it he called it a "severe chemical burn". The doctor says that they will have to change the amount of 5FU dramatically...does this mean that they gave him the wrong amount? Then they checked him into the hospital for fluids, antibiotics, work on the 8lbs he lost in 2 days and morphine to get a handle on the pain. My ultimate question is has anyone heard of a severe chemical burn??

On a side note he hasnt been able to swallow since Saturday morning and the first nurse was confused about the peg tube and the meds. She had to reorder some meds and didnt have a syringe so I offered her mine so that she didnt have to go thru the red tape of ordering one.

Next shift nurse comes with Xanax in pill form and we inform her that he cant take meds by mouth. She says "so you dont want the xanax, and we say yes but it needs to be crushed and put into the peg. We offer her our crusher and she refuses. She says we dont have orders for the peg so you dont want the pill! She went off to the hall to discuss the trials and tribulations to the other nurses about how she cant give him meds via the peg. SERIOUSLY.

So I am DONE at this point so I got one of his pills from my purse crushed it put it in is peg and told her we didnt need the pill and that I had already given it to him. Needless to say she called the doctor and he scolded my husband for my dirty deed. I am so tired of the everyday BS!!!!

Thanks for listening.
Cindy

My gawd!! What a trial you have been through - no wonder you need to vent. 5FU is a drug I asked my MO about and he said they prefer not to prescribe it as it can be a very dangerous drug with serious side effects. Maybe a consult with your MO is in order to see if another drug can be as effective? Also you might ask your MO for "magic mouthwash". If you do a search on this website you will find much discussion about the formulation of it, but it helps mouth sores during chemo. Perhaps it will offer your husband some relief.

One would certainly prefer to think that all of the medical staff got "A's" however there certainly are those out there who scraped by with a "D"!

Stay strong - it will get better.

Donna

I can't comment on chemical burns but practically all of us had mouth sores which are to expected (which is SOP with Cisplatin), as well as weight loss (I lost 61 lbs during Tx). Hospitals have different rules as you are finding out. It's best to stay out of them if you can. The nurse was just doing her job - some meds can be fatal if crushed (especially if they are time release) so they have to follow the doctors orders explicitly. I would take the doctor to task for not writing crushing the pill for PEG use in his chart (or better yet, ordering a liquid form of Zanax to begin with). Morphine comes in a liquid form as well. You measure it with a syringe.

If he needs fluids, have it done in the infusion unit - you'll be in and out in an hour and have a lot less exposure to sick people.

If his pain is getting up there he should be on something stronger, like Oxycontin or Duragesic 72 hr patches with Morphine for breakthrough pain.

It takes a lot of patience for you and him to get through this. It'll be one of the most difficult time in your lives.

I think that there is a semantics issue at play in the chemical burns statement. The medical office said that to explain chemo induced mucocitis to a lay person perhaps. Chemical burns in the mouth would indicate that a chemical was put there and that chemical burned the tissue. I may be mistaken, but I do not believe that is how he received therapy. Severe mucocitis that requires morphine isn't that unusual, and I personally can attest to the significant pain from mucocitis. I was on morphine and pseudo morphines for most of my treatment period, and for months afterwards as well. The when the pain finally subsided, I was still on them during a controlled withdrawal from them.

Gary is right about doctor's written orders. Their staff may NOT deviate from those orders, but as Gary stated, it should have been clear to him that with a PEG tube and oral pain present, that orders written to accommodate alternate delivery techniques should have been in place.

Lastly dosing for high level pain medications is highly personal. It is not uncommon for doctors to start a low levels and over a short period of time increase dosing until relief is achieved. People die from overdosing, and tolerance to a drug must be verified by incremental dosing when they are systemic physical depressants.

I have burns on my tongue, lips and gums from rads &chemo. Yes these burns are very painful and make you want to reach=into your mouth and pull the infected parts out. THe Dr said they will gradually leave and I will be feeling much better. He gave me mouth wash and Diladud to take every 4 hrs and it does relieve the pain somewhat. ( I spelled the Diladid wrong) lol, but who cares. This does work for a few hours. The mouth wash is the Drs concoction and is very good.

(Dilaudid in case anyone wants to Google it)

First time around I had 33 rad treatments and was so stupid I did not ask for one pain med. My mouth was burned very bad, I would lay awake at night and squirt ice water into it to try to sleep. Not this time --- a little smarter and a little wiser and not so much a hero. I am going to ask for alll I can get!!
The chemo isn't as bad as the radiation, at least not for me, however I just started it so I may change my tune.
Hang in there. Try the mouth wash and dont be afraid to insist on something for comfort.
God Bless

Well we have been in the hospital for one week and have learned that my husband might be missing and enzyme DPD that caused this condidtion. The doctor has only seen it once before and that patient died. The pain from this ecperience was 5 times worse than the chemo rad treatment. He had blood yesterday and they expect him to be well enough to go home tomorrow.

On a side note the nurse I mentioned above: the nurse was written up because the dr orders clearly said by G-tube but didnt say CRUSH. As a nurse it is her obligation to know what to do.

i ended up in the hospital for a week from severe radiation burns to my neck and i ran into the same incompetent nursing care that you did. half of them didn't know what to do with my peg tube either. it has made me scared to ever check into a hospital again!

Both times I ended up in the hospital I had one or two nurses that had no clue how to put meds through a g-tube and even less clue about feeding. The last time I was in a hosptial, I ahd a hospitalist on my side who after 2 or 3 days convinced the powers that be that I did not need a pump for my tube feeding when I usually did gravity feeds at home(and the pump was just one of several tubes I had coming out of me because my lung had collapsed during surgery so it was really nice to be able to get rid of it) and that I could just feed myself if they would just bring me a syringe and the jevity.

Actually it was much easier to get that to happen in the smaller local hospital where I was right after treatment because I was neutropenic and running a fever. The only problem there was they brought me Jevity that was quite a few months past the expiration date--thank goodness the label on the can had changed since that stuff came out which made me check the date. Otherwise I would have never tbhought to even check. They did apologize profusely to me when I pointed it out.

Moral of the story: if you are in the hosp. with a g-tube you really need to advocate for yourself. Too often, nurses only see them on unconscious patients and don't get that there are different ways of feeding yourself with one when you're conscious.

Nelie

My husband had a DNA test and discovered that he is missing the enzyme (DPD) needed to metabolize the 5FU chemo. The doctor said that they literally snatched him from death. That the pain he experienced from the toxicity of the chemo was extreme as were the short term side effects. The burn started in his mouth and came out the other end, worse than the radiation chemo treatment. His blood is starting to show signs of recovery.

On a side note. I went home Friday from work and noticed a plastic measuring thingy on his end table. I said what is that? (it looked like something you get in the hospital to measure with) He said finish what you are doing and I will tell you all about it. So I did a load of laundry, fed the dogs, opened the mail, fixed the ensure, counted the ensure, crushed the pills, and kissed his sweet head. So he and I are in our respective recliners and I say

That's a great story. I love it. Enjoy the omeletes.

Take care,
Eileen

What a great story. You put a big smile on my face.

Oh my goodness, Cindy....what a hoot! That is such a great story. I still kid my Bill about the "bugs" crawling on the hospital walls and the "mist" that was spraying from his IV tube and last but not least, those horrible people that were washing down the walls of his room....gotta love morphine!

I will never eat another omelet without thinking of your dual BMX 100's or whatever they call em.

Too funny, Deb

I've always wondered who buys those things they sell on TV like that?