Hi there,
Gabe showed me this site this afternoon and tells me it will help. I need help. My partner was diagnosed in March 2010 and we have just finished the last of 3 cycles of chemo. Next is 35 days of chemo/radiation. Alex is 51, has/had a 4cm lesion on his tonsils, involvement with the base of the tongue as well as ?one of his lymph nodes. PET has identified no other areas as yet so we are hopeful but not naive. Still coming to grips with all the terminology but believe we are T4 N1 M0 after reading others posts (if someone could help me out that would be great). Alex is unlikely to get involved in this forum, I am still trying to convince him that a psychologist and an astrologist do not stand side be side in the credibility stakes. He has just learned that depression is not always mind over matter either.

Welcome and sorry that you had to be referred here but believe me this site will be the best non medical treatment you both will have.

Please ask any questions or just rant away. We have all been there whether it's from the Patient's perspective or the Caregivers', we know what you and Alex are and will be dealing with.

What type of chemo did he already get and what chemo will he get with his radiation?

Was Alex a tobacco user?

We never see both the patient and the caregiver post together, it's always one or the other but you may print out any post that you think he might read. Some caregivers have had success with that approach. Depends upon the person obviously.

The more you can tell us about his cancer and his treatment, the more we can help you.

Hi David
Alex is/was a two pack a day smoker and heavy drinker. The drinking disappeared easily as everything either burns or tastes like soap (and this out of the mouth of the man who believes they drink beer and play rugby in Heaven). The smoking is not so easy. We both have a script for Champix which we start this week (when I stop procrastinating and get to the pharmacy).

Chemo was cisplatin, taxotere and 5FU. He did really well with managing side effects - our biggest issues have been weight loss and complications unrelated to Ca (massive pneumothorax of the L lung on day 4 of round 1 of chemo followed by a repeat on round 2, and then serious surgery that nearly killed him last week to try to fix what turned out to be a tear in the lung being made worse by the treatment of chest drain and suction). All under control now though and hope he gets a couple of days at home before the scary bit starts.

Radio/chemo begins in 3 weeks. I believe the regimen will be cisplatin (the one drug that gave him a hard time unfortunately (magnesium levels are critically low) once per week and 5 doses of radio per week for 7 weeks but no idea what type or dose as I keep missing our lovely RO and Alex is a bit vague at the moment and doesn't do details too well. All he wants to do is stay on schedule. He writes everything down, but it doesn't make sense when he reads it back (morphine is such a wonderful memory eraser).

We have been told that his treatment is extremely aggressive, so I assume it will some very high dose radiation.

He has an amazing amount of phlegm or dribble and can't suck or spit very well so it just accumulates until it starts to choke him. We don't know if it is a side effect of chemo, or an effect of the Cancer and any advice on what it is and how to handle it would be appreciated. Even shared experiences to let us know we are "normal" would be a help. Klo

klo,

Other then the lung issue, it looks like you are following a very normal path here. Even the lung issue is normal in that most here have some strange thing that pops up and needs some special handling during the course of treatment.

I always say that you know your in trouble when your doctor reads your chart and then looks at you completley perplexed and scratches his head.

I was a two pack a day smoker myself. My doc wanted me quit before radiation started so I did the Chantix also. I'm 9 months out and no smoking so that's working.

People ask me how I keep off the smokes and I let them know that putting your head in a microwave oven every day for two months should convince anyone to quit. Another factor is the clear knowlage that everybody I know would have just crucified me if they ever saw me with a cigarett again. I also have a quit smoking calculator that runs on my computer. It calculates how much money I have saved since I quit, its called Quit Keeper and you can download it from the internet. I have saved $3,277.03 as of today and did not smoke 11,203 cigarettes so that helps.

Klo, just wanted to chime in with my support. You will get plenty of it here, and plenty of great advice from knowledgeable sources. As indeed you already have. I personally can't speak to chemo but I can tell you that radiation is tough. He'll really need you and it sounds as though you're ready for the job.

I never really had the smoking monkey on my back and I know it's extremely tough to knock it off its perch. Case in point my landlady, who even after lung cancer surgery (they took half of one) still continues to puff away. I wish you both the best luck quitting.

Maybe someone else can comment more intelligently on the mucous issue. I won't even try. I had a similar problem, but it started a few weeks into RT.

Keep us posted and ask any questions, however innocuous they may seem.

Courage!
David 2

Klo,

Re the continued smoking, I must add that tough as it may be I have never seen anyone on this site that continued to smoke post Tx that lived. I hope that may be a big enough incentive to stop regardless of how hard it may be.

Yes Cisplatin is a tough chemo to have but the people that have had it in weekly doses seem to fare better than those like me that received the 3 big bags so let's hope he fares well this time.

The combo of radiation and chemo will most likely be tough but remember we can all respond differently so again let's hope he does better than most.

Yes this is an aggressive Tx because this cancer is equally aggressive. You will discover that his Tx is very similar to what many of us went through. Many also have pre Tx surgery to their oral cavity and/or neck. He will most likely receive 70 to 72 gys of radiation which we are told is our lifetime maximum to the cells targeted.

thanks people, message received. Will go fill the script at lunchtime so Alex and I become non smokers by World non smoking day on May 31.

Now, about the mucous/phlegm/dribble - anyone any ideas what is happening? Have tried the old fashioned antihistimines which gave him the sensation of dry mouth but the phlegm kept coming and if anything.it just got a little more sticky and even harder to clear.

Not a doctor here so always keep that in mind.

I don't ever remember anyone who did some chemo first having what you describe as a side effect. What we do see here is that towards the end of radiation and more common at the end of the radiation we loose our thin saliva which leaves us with the thick crap. A lot of us aren't able to sleep properly; gag and throw up a lot and definitely spit it out all day long but eventually over a period of usually weeks) it decreases and stops which gives way to another gift of radiation which is dry mouth. That also usually diminishes but over a longer recovery time lasting up to 2 years.

Just as I write this remember Rule #1 that each of us can be different.

Welcome to our home klo. This is the best place for honest answers and advice, He will need a positive attitude to help him get thru this. I was given up a couple of times, but I am here and still running my mouth. Get him some xanax to relax him some. It helps.

Hi Karen,
It's good to see that you are being welcomed by the OCF family and getting some good advise. As you know other than what I have read here or been told my knowledge of chemo and radio is limited. Next step is to add a signature under My Stuff, Profile and at the bottom you will see signature (limit 300 characters). I will email you some examples.
(Just noticed Jim jump in before I have finished typing...great thanks Jim..i'm one of his angels ;)).
I would continue here for a couple of days then maybe go to the Caregive/Co-Survivor, Currently in Treatment or one of the other similar forums. I found this site too late to start a blog of my own journey but you might find that useful too.
Am home with the sniffles today but will see you soon.
Cheers
Gabriele