can't breathe today (Xp11.2 translocation renal cell carcinoma)

Kathy, will they be able to

Kathy, will they be able to give him a higher dose of Sutent? What type of trial are they offering him?  There were others on this board with the same rare type of tumor, maybe you can put it in a search here and see what comes up if you didn't already. My memory fails me but perhaps someone else remembers who it was with a child in their late teens or so? 

I know how hard this has to be for you.  Don't think ahead, take one day at a time and focus on that day. The mind is strong and thinking ahead is too much!  If he gets chemo (did they offer that?) don't worry about the hair falling out, that is not an issue, it will grow back, i am sure also your son, who sounds like a trooper won't mind it either.

Praying for you and your family to be strong and to make the best decisions that will be helpful. There are alot of drugs out there now that can offer alot of help.  They just have to choose the correct one.  Have you contacted St. Jude hospital or children's miracle network?  I hear they treat rare diseases and for free! You just might want to check into that. I will do some checking for you as well.  We all band together here and are a family.  Sending you big hugs XXXXXX 

 

Also, there is a sight called smartpatients.com, perhaps you can join and post your questions there.   There are very experienced people there that might be able to offer help.

 

All my best!

MD Anderson satellite

Kathy,

   MD Anderson, recently rated by USA Today as the no.1 cancer center in the states, has a satellite in Orlando. I don't know if they have RCC specialists working out of that site but it might be worth looking into. Since your son's cancer is so rare you would probably go to Dr. Tannir in Houston first and have him weigh in and even direct treatment. But perhaps you could receive the treatment in Orlando, a couple of hour's drive from Gainesville.

Just a thought.

kathyoasis said:

I contacted Dr. Tanni and he

I contacted Dr. Tanni and he is on vacation. Another doctor talked to me. Unfortunately they don't take any pediatric patients. The person they suggest is my son's oncologist in cincinnati children's. They said they contacted him if they have a patient. MD Anderson says the youngest they treated before (the same subtype) is 17 years old and she lived for 6 years.

NCI offers a trial with Cabozantinib. I'm waiting for my son's oncologist coming back from vacation. Don't like summer. Everybody is on vacation!

A plan

Well, in the long days in which you await his return,  try to take comfort in knowing that you've consulted the top people, you've confirmed that you're in the very best of hands, you've found there is a possible trial and it's with one of the most exciting new drugs. 

You're doing all you can and doing it right.  I hope the wait isn't unendurable but you have a plan and we are all praying it works well for you.   Keep leaning on us here as much as you need and want to.