My husband Craig is 50 (nasophyrnx T2nb) Finished treatment 2/18/08 (35rad 3mega Cisplantin) and did extremely well.

Then the MO talked him into doing 5FU(5 day pump) with Mega dose of Cisplantin 3/10/08. He experienced a chemical burn that put him in the hospital for 9 days due to the extensive and severe burn from his mouth thru his esphogus.

So we went to UAB and got a second opionion about further treatment and she concluded that his body could not take any more chemo.

Since them we have been fighting many after effects.

Aspiration from swallowing
Neropathy
Pnemonia with HIGH fevers that knock him down every 3 days.
Dizziness and fainting
Fatigue
Low RBC
Continuing yeast problems
Unable to eat anything but fresh fruit
Muscle spasms thru his whole body and then uncontrollable shakes
No apetite
Lung doctor scoped his lungs and said he had never seen anything as bad as his throat. They could not locate his vocal cords 2 weeks ago.
Throat has been stretched 2 times
Doing swallowing therapy

His new MO says that he is an unusual case. I say they gave him too much chemo. Shouldnt he be improving some??

We are so tired of living this nightmare and dont understand why he isnt getting better.

Any imput is greatly appreciated!!!

I'm certainly not an MO but that end of Tx chemo cocktail sounds a bit extreme considering his Staging and his Tx. Chemo is poison and why put the body thru more after the traditional Tx should have done the job? Was there any sign that the Tx hadn't worked? Re the 3 mega Cisplatins, most now are getting smaller weekly bags which seem to work better re toxicity.

there was dramatic shrinkage after 10 radation treatments and nothing at about 20. The treatment was extremely affective. But the MO insistated that the additional was needed. He never told us that he was getting cisplatin with the 5FU until after the treatment was completed. Not to mention the fact that he had warning flags with cisplatin. Hearing loss, numbness and extreme sores in mouth and throat.

Wow, I think I would press to get some answers here.

I would be on that guys back like black on blue and make him do some explaing and fast. This just doesn't sound very sensible on the MO's part or thought processes.

i wish brian would let me know his opinion.

I don't have much to add here. Some of the things on your list, given his recent finish with things, are severe, but not unusual after effects. Others are extreme by the standards of what others have posted over the years here. I would want a consultation with another doctor at this point. If possible from another institution. The treatments seem extreme for this staging, but there may have been issues/circumstances that we don't know about. I would ask the doctor about the protocol that he chose, if it is one that he uses frequently, if these are the kinds of things he sees in patients on it, what other institutions are using it, if it is something that is well published on. You don't say much about what they are doing to manage these things. Have you asked them what they think the duration of some of this will be. When hearing issues came up early in the process, did you bring this to the doctors attention, and did he comment on it, note in in the patient records etc.

But with these severe side effects, I would want a fresh set of eyes on things. Get your own referral to ensure that it is completely independent, and ask for copies of all your records to date. Do not send up any red flags with those that have them, just ask to have your own set, as you may do some traveling to see family or something and you wish to have them with you.

I don't pretend to have a magic wand but, some of what you describe could be from Sleep Apnea and just accelerated due to his treatment. Please humor me.
Was your husband a snorer, light sleeper, tired most of the time or a person who woke many times during the night prior to treatment?
These are all signs and symptoms of sleep apnea and I have recently been involved with a patient, post throat surgery, who had similar complaints. After a sleep study he was diagnosed with severe obstructive sleep apnea. He has improved as a result of his treatment.
Just a thought.
Cheers,
Mike

Brian,
We received two second opinions after the chemical butn. Emory was a joke and they really didnt even examine him. We then went to UAB where the Dr advised that usually treatment decisions are left to the patient but in his case she concluded that the chemo had done too much damage and that it should not continue.

I have a copy of most of the records. All of the doctors have forwarded extreme amounts of records to UAB.

They all say that his case is unusual and that they dont know how long they will last. It has been mentioned that there is a chance that he will never be able to eat by mouth because of the damage to is throat and the aspirations.

I constantly brought up hearing issues and the ringing in the ears. The doctor said he had no idea why he was experiencing it.

Numbness was brought up too but DR pretty much ignored my communication. It was noted on the medical records but by the time he had the last dose I was screaming about the NUMBNESS AND HEARING. We were only urged to do the 5FU and never told that it would be in conjuction with Cisplatin that is the only reason I didnt put on the brakes. I knew by then that Cisplatin was getting to him. Drs have tried to lead us to believe that the chemical burn was due to reaction to the 5 FU but I have come to suspect that it was problems with Cisplatin in combination with 5FU.
Not to mention that his blood work was shake at best when they did the last treatment.

Dr Mike,

Yes my husband had huge snoring problem before he got sick. The world knew that he was an exceptional snorer. When treatment started I expected him to be exhausted and sleeping but he never did he was very hyper and slept very little. Chemo seemed to put is adrenaline in overdrive. He was tired but if he slept he had nightmares, night sweats and easily woke up. He has been using sleep meds but when he is at his worst physically he doesnt sleep. He barely snores anymore.

My husband didnt have throat surgery but snoring improved and sleeplessness has taken over.

Thank you all for the help.

If they didn't know that Cisplatin can cause hearing loss then what the hell did they know? I don't think there's one patient or caregiver on this site that has been associated with Cisplatin that doesn't know that.

I actually had to go on the drug manufacture's websites to get the full list of side effects from the various chemos my husband was on. I had one doctor tell me that my husband probably had the flu after the induction of Erbitux. When I went on the website it stated that flu like symptoms were typical. The charming doctor said she'd never heard that. Makes ya wonder.

Sue

Holy Moly! Reading stories like these makes me appreciate my medical team all the more! They practically hovered over me during my first infusion of Erbitux, and the second I said I felt 'off' it was stopped and I was given a dose of benadryl. Every week I'm asked about tingling and my hearing and given a pretty thorough head-to-toe exam.

I shouldn't be, but I am constantly amazed at the inconsistency of medical care in this country.