the "french" movie ending

The CT scan was done tuesday and I saw my oncologist in Brussels right after, he was very optimistic about my TIL treatment overall. My bloodwork looks good and then we went through the scan. Overall looks great, almost all tumors are smaller!

Since the first scan was done a month before TIL it is hard to use as a baseline as we do not know how much the lesions grew while waiting for TIL. Basically all lesions have become smaller...except one which is bigger now (about 3cm on left psoas that it was in that first scan only about 1.5cm). So we cannot be 100% sure it has "grown".

The cloud in the sky is that I have been having lower back pain since one week and I thought it was my period do did not even bother about mentioning this too much to him. Unfortunately, the pain has not gone away and is actually bothering me to the point I cannot sleep on my back anymore. It feels like a pinched nerve or lower back PMS.

So I went to NKI friday for my first 1 month follow up appointment with Prof Haanen to discuss the CT results. I had sent him an email the night before mentioning my back pain/PMS feeling and also the fact that I was 10 days late for my period.

When I arrived he immediately told me that the bloodwork shows that my ovaries have stopped working that I am pre-menaupoausal (do not know if this is reversible or not, this is a side effect from chemo). I was floored.

Then when I explained where I was feeling pain he seemed very concerned that the pain might be the lesion in the left psoas that has not become smaller and that maybe it is growing and thus not responding to TIL. He thought it was so strange just this one lesion would not respond, why? I could tell he was really annoyed by the lesion destroying the nice TIL story we had constructed until now. So was I. He asked me to watch the evolution of pain and let him know how I felt monday. He will revise all CT images on tuesday in the multidisciplinary team and discuss the possibility that I start radiotherapy in Brussels asap. The lesion is in an area of the left psoas is not operable I have had it since 2010 - so this would be the only way to deal with it quickly. Though my dad is furiously exploring through internet where I could access other ways like gamma knife, cryotherapy and nanosomething...

This was not the disney ending I wanted for this movie, so I choose a french ending. You know how in french movies sometimes you do not really know what the hell is going on and you just stare at the screen thinking so is it over? what happens now?

Anything can happen still. I have met people who have done TIL and they have had some new or growth at week 4 scan before regression at week 8 scan (seemingly because their tumors grew while waiting for TIL so they needed more time to respond).

BUT Yesterday while my mother and I waited for the train back to Brussels I allowed myself to be miserable, really miserable as we watched a storm from the window of a sushi restaurant. We both let it all out, watched the white little flowers (cherry blossom) fall and be trashed by traffic. We cried and just sat there. We both said we felt crushed because somehow the dream of a pure nice crystal clear "complete response" stamp which means you might be cured seemed to be out of reach for me now. That somehow I would have to take my "mixed" results and continue chasing melanoma with a new course of treatment probably already in the next weeks.

Today I woke up more optimistic. After all, I have had ALL other tumors respond (arm, shoulder, back, neck nodes, above left kidney and right buttock nodes... and no NEW tumors), my bloodwork is great and all other side effects are resolving, my energy is back. So I chose the french ending and say we just do not know yet. We just watch and see.

So we had a great day, I felt strong enough to go the park again with the kids and walked the whole round, even went walking to buy Hadrien his birthday favorite cake and we made mexican yummy tacos for tonight's birthday feast and we have just had a great family dinner. Perfect ending to a great day.

My oncologist emailed me back (I told him the whole Haanen appointment) and he is saying we should be cautious not to jump to conclusions for now. He will review images again as he did not seem convinced the pain I describe is from the lesion and he clearly wants to be sure before I start radiotherapy, to re-do a CT to see if the lesion is growing. I am sure him and Haanen will talk about this.

So stay tuned but expect a french ending...