What did you say?

fishmanpa said:

I Hear Ya.... hopefully!

Thanks Denis,

From what I've read, you're an exception. My reality may be much different as the unknown primary warrants a more extensive field of radiation. I know the left side of my neck where the tumors were located will get a 70 dose of rads (I don't know the technical jargon for that). Other areas will get less depending. They will be hitting my entire neck and head but will spare my larynx. I'll get more details Wednesday at the dry run. 

I'll be seeing my MO on Friday and I will discuss the chemo at that point but one of the common side effects is ringing in the ears and loss of hearing. I'm not too happy with that. I don't know if there's an alternative drug for me. Because of my cardiac issues, they have to be very careful as chemo drugs are very hard on the heart. 

Thanks for the encouragement. Time will tell what my new abi-normal will be.

"T"

 

I posted this a little while ago in a thread on "Cisplatin" ... but thought I would repeat it here in case you are checking this thread instead , Mark ...

"T" ,  my son also received the 7 weekly Cisplatin chemo txs concurrent with the rads.  He completed treatment in Sept. 2012 and does not seem to have suffered any hearing loss or tininitis from it.  It was explained to us that when the Cisplatin is given one day a week during 7 weeks of rads, that it is a low dose of Cisplatin and its purpose is to weaken the tumor so that the rads are better able to destroy it.  When used in that way, Cisplatin is given at a more tolerable lower dose (with less side effects) and only used to assist the Rads (i.e. rads are the primary treatment modality and chemo is only secondary).  My son's rad onc was adamant that the Cisplatin be started at the beginning of the first week of rads because the rads do not work as well if the low dose Cisplatin has not been used to weaken the tumor.  My son's tumor was on his left false vocal cord (ary-epiglottic fold).  His voice seems strong and normal now, even though he was only able to manage a weak whisper in the final weeks of treatment and for several weeks after.  He did not have the "loss of ability to sing" concerns because his llivihood does not depend on his voice although he does play guitar and has been in several 'garage bands' with friends.  His singing voice has always been merely adequate ... never high quality like yours.  His speaking voice certainly sounds fine to me ... exactly like himself ... a source of much joy for me to hear when I speak to him by phone.  I stayed with him as his caregiver while he went through treatment, but my own house is a long distance away ... so now that he has NED status, we only keep in touch  by phone.   He has mostly been spending all his free time skiing ... so far he has been able to ski 40 days this winter.  The desire to recover enough post-tx to get out on the slopes this winter was a powerful motivation for him to regain his physical fitness ... and he did it.    "T", you also have some powerful motivations and from reading your posts you have great inner strength.  You have what it takes to survive and thrive.  Stock up on what you need onhand to help you with some of the things you can try to control ...  Mugard and other mouth care tips members of this forum have shared as helpful in avoiding mouth sores... ointments and creams to apply for exterior skin burning and redness ... pain control meds your doctors can provide if you keep them aware of when you need some numbing... all those things in the SUPERTHREAD that can pave your path to get through this.  Then try to relax as best you can and let those who care about you do some of the heavy lifting. 

NJShore said:

Listening!

T,

I am listening as I write, beautiful music..  and I can see why you are so very nervous about all the impacts you potentially are facing. It is scary, it sucks, it's a rotten thing to do to nice people, and it's not fair. It hurts us all. Don't forget though, God gave you more than one gift, and you can perservere. Although it might not have been in your plan, you can.

It's not going to be easy, and your fight is great, you have the gumption to get through this and fight this so well. You have been amazing in all you've gotten through so far. It's that same fight that doesn't want to let go of anything you have, to succumb to Jack. And god willing, with your fight and strength you won't loose anything, but you might need to make some adjustments as you get through this. Pick your battles, focus on what you can do, fight Jack. Don't waste your energy trying to get back to home plate, while you are headed to second base. Concentrate on Second base.. get through the treatment. Then heal. Then put yourself back together. It's amazing what energy it will take, and what time it might take, but if you want it bad enough - you'll get it back and make it ok - because dear friend, that's who you are. That's what you do.

Leave the worrying to us, and we will be there for you..  and I look forward to your song, maybe about a new lease on life

Hugs,

Kari

ps - it's ok to be scared, who wouldn't be.. but look at all these great people who have made it to a great place on the otherside. You'll be surprised how fast it will go once you get started. You'll be done before you know it.

Kari..........well stated,  I should have read all the posts before I responded to T's concerns.

T..............listen to Kari