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March 2, 2013 at 6:41 pm #21074patiParticipant
I wanted to post – in the spirit of Cecilia – that I am also doing really ok, friday I got the confirmation that the dutch regulatory bodies approved for the extension of TIL to include a couple more patients which is great news! Now it is countdown for surgery date, leucapheresis and then the rest. I know that the zelboraf I have been taking since dec 20 is stopping to work, you know how after almost 5 years you know your tumors and can feel the changes, so yes my old tumors are active again,
So there is I guess the whole mind sending thoughts that I wish I would not have, but in day to day life we are very very happy, I made awesome Tacos Thursday, and I am spending a lot of time with the kids as I cancelled one of the classes I was supposed to teach this semester. I continue doing all the other stuff (meditation, reiki, resseguier method, love, chocolate etc, and even have lots of people sending prayer one of my friends doing shamanic stuff) I am just really having a good time integrating the whole thing, really this work keeps me sane and alive in the deep.
I must also come out of the closet and say I have been reading a lot about NDE, too I must say we never talk about the big D here (which I understand) but I have at least intellectually engaged in discussions about euthanesia as it happens here in Belgium and also about all sorts of theories of death and dying for the last year or so. At first this was weird and I thought maybe even creepy, but I found so much to read even in well reputed journals like the Lancet that I was surprised and now I find myself more at peace with death and dying (again maybe just intellectually but still this is a big thing for me). I have been doing this inner check of “how am I with dying” for the last year so I have lots of readings if anyone is interested…I assure that most things are quite ok as I check for sources etc.
Lastly, as I enter the TIL trial I will keep the updates in a little blogg I put together, I also did this because I had to start fundraising to be able to afford the TIL (will be about 30K Euros) and this has also been a lesson as I always found it hard to ask for help but I have been just so amazed at the network of support (you know like friends of friends of friends that do not even know you?) anyway…
Like Cecilia I wanted to say that my life is good and I am happy and looking forward to the sun…
here is the blogg where the news for TIL will be postedMarch 2, 2013 at 8:50 pm #59421rochelleParticipant
would like to wish you luck with the TIL…I think I may have mentioned as I know Catherine has..there’s a young lady in our area who has had TIL treatment and is doing quite well. I have been reading your blog and will be looking forward to reading more as you recover, write and get on with the joy of living after your treatment
I also want to comment on the “D” word as I agree, in general, people shy away from the topic… as if talking about is bad karma or something. I know when I was first diagnosed, I was awfully surprised that I had not been chosen to be the one to get out of this life alive! ( I say with tongue in cheek
but seriously…when I was first told I had stage IV melanoma…I realized I had spent most of my life not thinking about what my death would be like. And then, like you, I began to read some different writings on the issue of death. Mostly Buddhist writings…and I learned such things as “make an old friend” out of death…and death is the last mystery of life…and do I realize we are all dying and therefore, with that knowledge, treat everyone with more compassion and so on. I wanted to ready my mind and heart (as best as one can)…. so everyday, I think a little bit about death, not with obsession but with preparation…and I also think about living…it’s one of those strange gifts melanoma has given me.
All the best to you Pati…you know the whole team is rooting for you!!
and ps…those bald heads you talked about on your blog? When I was bald from chemo…I thought there was something kinda cool about itMarch 3, 2013 at 12:47 pm #59422CeceliaParticipant
Pati, you are a model of courage for all of us. We know that melanoma runs a course full of ups and downs, but you teach us how to meet them all without resistance. Like you, we read a lot of books–mostly Christian and Buddhist books on nonresistance–but you live it. Thank you. And yes, if you have some great titles, please share.March 3, 2013 at 3:47 pm #59423 patti, Had been wondering how you were getting on. I am hoping and praying for you to get the best results for this treatment.
You may be the first to get through so much but I suspect my son is the youngest TILS responder. I took him to see the Monza Grand prix from England just 16 days after he came home from this treatment.
Hope that gives you hope .He is still getting more energy everyday 6 months on. sMarch 3, 2013 at 9:54 pm #59424JonathanParticipant
It’s always good to hear from you, and I’m glad your plans for TIL are moving forward – of course, I assumed that with your unbelievable energy, you’d get it if you wanted it. You write so well and movingly, it is always a great pleasure to read what you have to say.
We all have that Sword of Damocles hanging over our heads to some degree, and learning how to live well in its shadow, and accepting its continuing existence, is a great achievement and benefit. Life is precious and valuable, and should not be wasted on ephemeral issues.
Take good care of yourself,
JonathanMarch 4, 2013 at 12:24 am #59425Dick_KParticipant
Great to hear and I hope it’s not too much longer before you do enjoy the sun again.
DickMarch 8, 2013 at 5:47 pm #59426MarianAParticipant
Hello,Patricia. Do you live in Belgium? We are hoping my son will have the TIL treatment but there is a question over funding. I saw mention of €30,000. Is it possible to have this treatment privately in Belgium? We live in the UK so we are neighbours! Best wishes to you and fingers crossed.March 8, 2013 at 7:25 pm #59427Catherine PooleKeymaster I will answer here, Manchester in the UK is doing the TIL therapy. It is not being done prviately in Belgium. Pati is traveling to the Netherlands for the treatment. I would check out the possibilities in the UK first, may be more reasonable.March 10, 2013 at 9:26 pm #59428 Have you contacted the christie prof hawkins to ask whether it could be done here. My son had the treatment at manchester, I know they do have to bring own funding but prof hawkins did say to me he would answer emails and advise. The treatment is not for everyone.
My son was too young to be eligible for trials but I do think they help if they can. Good luck sMarch 11, 2013 at 10:04 pm #59429HeinParticipant
Christie’s in Manchester and NKI/AvL in Amsterdam are the only two centres in Central Europe doing the TIL. They have a joint venture in this and the treatment is the same.
Last information I have got about the costs at Christie’s is GBP 50.000, but this was some 6 months ago.
HeinMarch 11, 2013 at 11:27 pm #59430benpParticipant
I have been through TIL an The Christie, 50k Pounds is pretty close to the mark, though variable (depending on if they need to do a second expansion etc.).
Ben.March 12, 2013 at 2:59 pm #59431
Hope you don’t mind me asking Ben but we started as you were finsihing TILS . How are you doing? SMarch 15, 2013 at 4:16 am #59432Sandalwood36Participant Is anyone aware of any open TIL trials in the US besides at NCI in Maryland?March 15, 2013 at 4:32 pm #59433March 15, 2013 at 5:15 pm #59434Catherine PooleKeymaster I believe you will find TIL therapy at Moffitt, MD Anderson, and possibly in Seattle Cancer Care Alliance.
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