SO....TIL and IL2 are as bad as they say....

I am finally emerging from a dark tunnel, chemo as I said was bearable I think I will shave my head tomorrow...My dear friend Erwan already shaved his in solidarity and he looks really hot, I am not sure I will.

I wish I could tell you that it was "not as hard" as they say blah blah blah, but this is the hardest thing I have ever been through in my whole life including natural childbirth and a peritonitis. NOTHING prepared me to the reception of the TIL infusion, those innocent little milky cells arrived and I even had a banner welcoming them back home, I was very excited and so was Prof Haanen and all those around, in the end the cells given were 150 B which even though did not beat Hein's record BUT I was told was just as wonderful. 2 criteria were good in my cells a) fast growing b) big number 150B

Haanen was very smily!

BUT within 30 minutes I was going through a rollercoaster of non-stopable chills that became shaking, vomiting, high fever and just pure hell...this took a while to manage, cannot remember maybe 3-4 hours? because of the strong reaction we started the first IL2 a bit later than the normal 4 hours. Brigitte Maskens was holding me through all this - poor thing, it must have been scary. So the first IL2 comes and I just go into severe chills and rigors until I finally get enough demerol (pain killer) to calm me down, I ache everywhere and take another long time to recover.  I mean you do not really get recovery time but you try, eating or drinking were completely out of the question for me. I had severe bouts of nausea (again poor Brigitte dealing with all this). The nurses and staff were very attentive but no matter what you feel like shit.

The next round was "a bit" better but not really by the third - I convinced the nurses to give me the demerol 15m as soon as the IL2 was in and this totally changed things as I did not get the chills!!!! this made a huge difference. But by the 4th IL2 they had changed an antibiotic because they had found some streph in my blood and this antibiotic gave me severe allergic reaction plus I was getting the broken capillary syndrome from the IL2 so I stood ground and said no more IL2 I stop here. Haanen tried to coy me into another round but by thursday he agreed with me....so I though it was going to be be uphill but the allergic reaction and severe nausea just took over basically I slept 23/24 hours since thursday and when I sat up I vomited and my whole body and face looked like I was a zoombie with capillaries broken etc "horrible". This is not how I envisaged my B - day tomorrow, I am only since the last hours feeling better so since I have received many messages I am posting on the blogg, sorry I cannot reply to individual mails nor phone call I simply do not have the energy. The Dr this morning changed the antibiotic and gave me a pill to start loosing the 5 kilos of extra water I carried so I guess this is related. Tomorrow I will be better. By monday I will post a more cheerful mail!

Thanks to all your messages!!!!!

P