Bold and Bald moves: 2013

Thursday February 7 2013

If you know me a bit, you know I am stubborn, one person once told me many, many years ago…"you incarnate what Italians call GRINTA"! So as you may (or may not ) have heard my latest attempt to treat the cancer in Paris did not work.

After almost 5 years living with cancer, part of me accepts this, medicine is imperfect - so I want to assure you that I continue to be "well" in spirit and mind and body and living fully for now, I am happy, very happy. BUT I was lucky to get a spot…."again"…just in time in a very promising trial.

So I just came back from discussing a new "TIL" trial for melanoma at the NKI (National Cancer Institute in the Netherlands) at Amsterdam with Prof Haanen – This is a young cell transplant therapy with my Tumor Infiltrating Cells for me, more personalized does not exists I think.

Alex and I come back with great hope.

Prof Haanen and surgeon who saw me determined that I am in great shape to join their trial so now they are waiting for the dutch regulatory approval - once that is done (really just a procedural aspect) we can start the countdown for the treatment.

The first steps will be a few consultations for surgery for harvesting of the TILS from one of my tumors and the young cells from my blood (I will spare you those details!). He said they have 80-100% success rate for now in growing the TILS into the billions. After they grow, we can start and I will be 3 weeks in hospital for the treatment at the NKI. This includes one week of 2 chemos, one week for the transplant of TIL and High Dose IL2 (only up to 4 or 5 treatments of this last product are given of this to reboot my immune system) and then the rest of the time to recover as the side effects are "interesting"….

So the plan is then I recover…and will be totally bald…and we hope in remission. His response rates are of 50% but only 10- 15 % get a complete remission.

I will keep you informed as soon as I get their approval – I will have a hard time doing personalized feedback of calls. And as you know - I am not good with phone at all….makes me emotional and tires me to get into it over and over and I suspect it makes all of you also funky…so please I do not expect you to call or write or anything, I might even hide away from your calls or emails : I know you are there for us and have always been. It is not easy to talk about, around death and cancer I know, it has not been easy for me nor for you I know.

BUT if anyone wants to shave their head in solidarity I am all game for a good mosaic of bald faces in here….