Hi everyone, I have posted here once but have not formally introduced myself. My husband was dx with stage 4 base of tongue cancer on Aug 1, 2007. Since then, he has gone through surgery and now we are 1/2 way through radiation (tomo)therapy and he has had one of 3, 212mg. doses of cisplatin. It was cancelled last week because of low white count. Is 212mg a high dose? So we are gearing up for next weeks 2nd dose. He is looking so thin and pale other than the radiation burn, that it is so hard to even look at him without wanting to cry. He is 6'3" and now down to 173 lbs. He has a G tube but because of all the nausea he is having a hard time even putting anything in that. If I suggest nighttime feedings (which I have many times) he just gets angry. There is something in his throat that is triggering his gag reflex therefore making him nausous. I have taken your advice and let the professionals deal with his weight but it is so hard to do. Any suggestions would be greatly appreciated. Oh, and just cause I don't have enough to deal with, I have to have my gallbladder removed this Friday. I am actually looking forward to it. Because for a short time I won't have to deal with this monster that has taken over my husband.
Valerie

Oh Val,
So sorry for what's happening in your life, but it sounds like you have the right attitude--crazy as it might sound to some, Gall-bladder removal can't be fun, but yes, you just get to focus on something else for a while--let them look after YOU and get you well, so you can go back to the battle 're-energised'
As no doubt you have read, this battle won't be easy, but take heart from the many survivors here, and get the docs to treat the nausea problems.
I've had little of that, but just a little was enough to make me feel lousy--medication for it was a lifeline!
Keep us posted as to how you are both doing,

Brenda

Brenda
Thanks for the reply. I have been following your situation and I am amazed by your attitude and willingness to still support others through this awful disease. I'm not sure I could be as strong. I don't feel strong now at all, but thanks for your support. I forgot to mention in my post that we also have a carepage at carepages.com and our page name is Leonandfamily. I think it is nice to put a face to the people here on OCF. I enjoy visiting Minnie's page and seeing her and her family.

Valerie

Valerie---you are stronger than you think you are!
You're already doing it and you're coping--and just read other's posts and realise how hard it is, how much worse it gets, but how much there is to celebrate when the milestones come around--as they do, and will!
But my mantra is how much I admire you carers, what you suffer and go through, and I always advocate how much you need to look after YOURSELVES!
Your guy's cancer (and yes, it's usually women who are the caregivers) aint your fault, and may alter him for a while, but you must so NOT beat yourselves up during the treatment and survival process--you MUST make time/opportunity to keep yourselves happy and healthy and know that for lots, this will all pass and get better,
Brenda

Hi Valerie,

Your husband is only a year older than me so I can really relate to the anger he seems to be exhibiting. It's normal and he WILL get past it. You will probably get the worst end of it and keep in mind that he'll treat you the worst because he's secure with you and knows no matter what he does that you will stay there with him. Just make sure he doesn't cross the line, there is a limit on him taking it out on others!
Does he take anything for the sick stomach?? I've been dealing with the same thing and a change in food and some meds took care of it in a days time.

Take care and keep us posted.
Minnie

Valerie,
regarding your question about the cisplatin dose. This was 212mg. I ASSUME from what you write that this is the total dose. Since he is getting 3 treatments I assume that this is applied every 3-4 weeks.

For a 3 dose regimen 90-100 mg/m2 is dosage that is commonly used. Depending on the weight and height you get the Body Surface Area in m2. Again assuming this to be around 2-2.1 the number you state 212mg seems to be reasonable, especially when taking into account that he probably lost weight from when the initial calculation was made.

For example my BSA is 1.99m2 (170lb, 6ft) so with a dose of 30mg/m2 the total amount was 60mg. If you get this weekly they give you 1/3rd of the dose.
FYI, I am not an oncologist.

Hang in there it will get better.

Markus

Valeria
It sounds like alot what I put my wife threw.
The Peg tube will help, I did not have it, lost 112lbs, the chemo and radiation, I found while going threw it at the time I was the most angry and hard to put up with, but after it was over and started to heal it started to get better.
My wife came home one day after shoping I was in one of my moods, she just threw everything at me, told me she was not going to take this shit anymore and walk out the door, had to deal with everything my self for few days, made me realize what jerk I was. As sick as we are I became very self centered and forgot what I was doing to others. Being put in my place did hurt me at all.

Thanks for the reply.
Markus- he is getting 212mg each time. 3 doses 3 weeks apart. I think it is so interesting how different everyone's treatment plan is.
Dogman- Boy, your wife gave it to you didnt she? I'm not sure I am there yet, but if I keep getting criticized about everything I do and he gets mad everytime I want him to eat I may get there. Oh my gosh you lost 112lbs? Were you heavy to begin with? I can't imagine. Your situationn is very close to what my husband has. How is your speech now? My husband had 1/2 is tongue removed with a radial flap so his speech is not good.
Again thanks for the help.
Valerie

Valerie
I was lucky with my tongue before surgery they said they might have to cut the whole tongue out and make a new one, but they found the tumor to be small and no root system so they just removed the tumor which was way in the back. Had full neck disection do to it spreading to lymp system on right side. I started out at 220lbs did not use the peg and almost starve to death, spent 3 weeks in hospital being hydrated and fed till I could eat. Eating was the most diffucult had to try alot of different things to see what I could eat. I think as far as being angry one is also scared of dying while going threw this, not to make excuse for my behavior but I was mad at the world not just my wife but she took the brute end of my angry. The sad thing about our type of cancer there is not much of it around or close to us whare one can talk with another oral cancer patient. I did find another lady not to far away that had the same thing I did and we had the same surgon, we would get together and talk none stop about what was going on in our life and how it has affected us, that did help me alot. Maybe show your husband this board room may help. It does get better.