Thinking of Pati Today
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April 16, 2013 at 6:40 pm #21194
Catherine Poole
KeymasterPati is in the Netherlands going through the TIL therapy. Yesterday she started the IL2 part of it and she’s been heavy in my thoughts. I hope you will join me and send her your best thoughts and prayers that she gets through this tough time without a hitch! April 16, 2013 at 7:34 pm #60105Hein
ParticipantPati had a good start of the TIL. She is doing the chemopart at the moment to bring down the immunesystem. In the beginning of the next week she get’s her T-cells and the same day she starts the IL2-part. For everybody who wants to give her support, LIKE the candle at
https://www.facebook.com/ACandleForPati .Hein
April 16, 2013 at 9:25 pm #60106Catherine Poole
KeymasterHein, Will you be able to see her? What chemo does she start with? I thought it was all IL2. I’d love any news you might have. Thanks!
April 16, 2013 at 10:53 pm #60107DadZGirl
ParticipantThinking of Pati every day. Thanks Catherine and Hein for the update and link to light a candle for her. Pati is awesome and I believe in her with all of my heart. Laura
April 17, 2013 at 3:41 am #60108Shirley Z
ParticipantPraying for Pati and sending her my best wishes. She’s a fighter. Such a wonderful inspiration to so many people. Shirley Z
April 17, 2013 at 3:49 pm #60109Hein
ParticipantHi guys, I visited Pati today. Giving the circumstances she is doing really well upto now. She is on her second day on Cyclofosfanide and Mesna. Tomorrow she starts on 5 days of Fludarabine. Then she has 1 day rest and after that she get’s her T-cells followed by the IL2.
She is on painkillers because some nodules press on some nerves, she is a little ‘woozy’ but upto now no real sickness.
She is cared by a lot of the same nurses that took care of me, so “I made extra clear” Pati is very special to all of us and they should consider her VIP. The nurses there are allready really nice but now probably even more.
She is offcourse nervous about all that’s coming the next two weeks, but I told her about my experiences and I could see the fighting spirit in her eyes. She is accompanied by a good friend as her husband and children are not yet able to join her.
She apologises for not being on the forum so much or update her blog, but the preparations and the treatment have major effect on ones energylevel and concentration.
But she appreciates all of your good wishes, thoughts and candle LIKES (
https://www.facebook.com/ACandleForPati ) very much. So please keep sending them. On the Candlepage I posted a photo of Pati and her “close connected friend Oscar”: the infusionpole.Hein
April 19, 2013 at 5:36 pm #60110Hein
ParticipantVery good news from Pati today!Her prof told her that the amount of T-cells she will get next Tuesday, will exceed 200 Billion by far. NKI never has seen T-cells grow so fast with anybody.
This gives her a really, really, really good chance of becoming a complete responder.
Keep your prayers and thoughts coming.
Hein
April 19, 2013 at 7:10 pm #60111Catherine Poole
Keymasterthanks Hein for being there for Pati, gives me great relief to know she has an advocate there. Are we all not just a closeknit family afterall! I heard from Pati today with great news about the TIL growth! Just a few more weeks and we will be on the other side of this. Please keep in touch! Do you happen to know the address there so we could send a card? April 19, 2013 at 7:50 pm #60112Anonymous
GuestThis is such wonderfully good and hopeful news! Thank you Hein and Catherine for sharing this. Hein, you are fantastic. I’m so happy for Pati. Chokes me up.
God is with you Pati.
Jeff
April 19, 2013 at 9:06 pm #60113Hein
ParticipantYou are all welcome. I am happy I can do something in return for P. The adress to send a postcard is:
NKI/AVL
t.a.v. Patricia Garcia-Prieto
Afdeling 4B
Plesmanlaan 121
1066 CX Amsterdam
Netherlands
A faster way to show support is the CandleForPati-Facebookpage.
Hein
April 20, 2013 at 3:02 am #60114Anonymous
GuestDone. But I see it posted from Rachel’s page. God’s speed Pati.
Jeff
April 21, 2013 at 7:46 pm #60115pati
ParticipantHi Everyone, so moved by your support, being held like I am not only by friends, family, but by melanoma MIF family is ESSENTIAL for me. I took a break from advocacy as I started getting worst after anti-PD1 and basically giving up on other medical options (and letting go of trial searching) and will never forget Hein and Cathy and all of you reminding me to not give up.Hein really did not let go and keep on saying just try Haanen again, but he had refused me twice so…but I did, and I did not give up. And here I am about to get my last chemo at midnight tonight (so far, lots of fatigue, some nause but totally control with meds and no marijane to my regret, mostly just tired and woozy). So connecting is hard, I have kept the blog up to date but wanted to say here I just love you all and i am convinced my TILS have grown because of all of us connecting
Tuesday around 11:am I get the batch that they can give me and they will freeze the overproduction of TILS for “in case I ever need them”….What a TIL golden hen I turned out to be!
😆 Pati
April 22, 2013 at 3:49 pm #60116Hein
ParticipantKeep kicking P. A candle with your name on it is burning here for you. May your body welcome your new cells as smoothly as mine did 1,5 years ago. Thumbs up, good luck, thinking and praying for you.
Hein
April 22, 2013 at 6:43 pm #60117Mom2Becca
ParticipantI’m glad it’s going well, Pati. We will keep praying for you and all who are fighting this battle. April 24, 2013 at 8:38 pm #60118Hein
ParticipantTonight I received a short message from Pati. She is going through the hardest part of her treatment at the moment and I know how exhausted she must feel. She experienced the T-cell transplant as VERY intence with sickness, shaking and really exhausting. She has done two IL2-transfusions so far of which the first was heavey and the second more tolerable.
She will probably finish IL2 tomorrownight and then she is of chemo’s and it will be uphill for her.
So please keep your candles burning and your prayers coming for at least one more night.
Thanks for your support so far.
Hein
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