Dr Harrison is my doctor too Rob, and who I was speaking of, and is doing my surgery next months with IORT, with Dr Jacobson, which is similar to high dose brachy without seeds. I switched from Mt. Sinai last year to see him.

I spoke with Dr. Nancy Lee today who is a head and neck radiation oncologist. She suggested we do the chemo first to get the tumor down to a manageable size and then she's referring me to Procure in Somerset, NJ, for proton therapy. Anyone here familiar with this treatment?

Time is of the essence, so I must start chemo right away, which will start on Tuesday. The tumor basically went from the size of a quarter to my guess is now the size of an orange in 2 months! The pain gets worse day by day. This is truly frightening.

I am so glad we switched to MSKCC. Although we were assured by more than one doctor at Sloan that the treatment I had in Morristown is pretty standard, going foward, Sloan has already given us more options. I'm not saying I'm not going to investigate your suggestion to go to Beth Israel, I'm just saying that right now I know that chemo is the only bet to prevent this tumor from choking me to death.

Procure is the Proton Therapy Treatment Center in the metro area located in NJ. I know someone from another board who was treated there, after a recurrence, but cancer may have returned again. One thing, there are not many studies done with proton therapy, and new therapeutic equipment needs no clinical trials for approval like chemo does before approval, and just needs to meet or exceed the current type of treatment equipment it is to replace, and submit a form to the FDA to be fast track approval. I guess others, including MSKCC, are waiting to see more results. On Dr. Lee's video, she mentioned they may be looking into obtaining.

Do what you think is best, on medical advise, and tumor shrinkage first sounds like a good plan. I wish, and hope the best.

I'm the mother of Katie B. Thank you all for the support and encouragement you gave Katie over the last 18 months. Your specific suggestions and general moral support helped her cope and gave her hope. Your generosity in sharing your amazing stories is humbling.

I want you to know that Katie had a very specific, rare and extremely aggressive form of tongue cancer and that, from what I've read of your stories, what happened to her so quickly should not happen to you. She's part of a very small group of young patients (under 40) with no known risk factors and no HPV component, whose cancers go from the size of a dime to the size of a lime in a matter of weeks. In this subgroup of patients, a recurrence within two years carries a poor prognosis. Katie's recurrence came within two months of finishing her initial treatment.

I want you to know, too, that everything that could have been done under these circumstances was done. Her doctors fought as fiercely for her life as she did herself. They never gave up, and when the tumor stopped responding to treatment, they were trying to prepare her for inclusion in a clinical trial. But this alien beast had a grip on her throat and wouldn't let go. Her pain meds were not changed to morphine and methadone until 10 days before she died, which she did peacefully and painlessly in her childhood home with me.

In the short interval between the end of the first round of treatment and the beginning of the second, she and her husband were able to go on the OCF fund-raising walk (last September), where she was happy to meet some of you, and to talk with ChristineB.

Her memorial service will be held next Sunday, March 16th, and there will be a table set up at the reception, with information on head and neck cancer and on the Oral Cancer Foundation's efforts to and raise funds for research and treatment.

Thank you again for helping Katie. Thank all you brave hearts.
Bless you.

-MamaM

Thankyou for sharing with us. I know you all have wonderful memories of Katie.
I know that I will always remember Katie and her brave struggle.
Thankyou too for raising awareness of this awful disease.
Tammy

Thank you for your post. Many blessings to you and your family.

Thank you for providing the update. It is so VERY sad to hear about those who lose the fight. Surely she fought mightily but the beast was too much and I so hope she was in peace and comfort on her passing. Don

Thank you, Katie's Mom for sharing with us. In the midst of the extreme sadness surrounding you and your family at the loss of your beautiful daughter, you have thought of others in their struggle against this horrible cancer beast. I will always remember Katie's love for her family and the strength with which she fought so mightily to survive. She surely is a reflection of the strength and loving care you shared with her. I hope in the difficult days ahead you and your family will be able to find moments of comfort in each other and in the beautiful memories of you all have of Katie.

Mama, do you have a link for the Memorial Service? There may be some members who met Katie last September who would want to attend.

Thank you so much for going into detail about Katies condition. Im sure it has not been easy for you, Damien or the children. Katie will be greatly missed by so many.

I am so sorry to hear this. Hugs and blessings to you and your family at this difficult time.