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June 26, 2013 at 1:39 pm #21401
Not good news on this front and I don’t often do this, but Pati is such an inspiration to me, all that she has accomplished for patients! please watch her video from a while back, it is so compelling and keep her in your thoughts and prayers : https://www.youtube.com/watch?v=vmt-j7ZCzVs&feature=player_embeddedJune 27, 2013 at 11:11 am #61474GillyParticipant How is Pati doing – I saw her last blog and though she was her usual courageous self I wondered if you had any more news – she is such a force for us european members and while I want her just to focus on herself and her family right now, I would like her to know we are rooting for her….June 27, 2013 at 1:31 pm #61475 The TIL therapy may not have worked and she has progressed. She is having terrible side effects from radiation. Please do keep your good thoughts going her way. She is a high energy person who has lost that zeal right now.June 28, 2013 at 3:33 am #61476Shirley ZParticipant So sorry to hear this. Pati is such a wonderful person.
My thoughts and prayers are with her for strength and
Shirley ZJune 29, 2013 at 2:25 am #61477CeceliaParticipant
Pati has both my thoughts and my prayers. She has been so much help to so many that I’m sure is surrounded by nothing but the most positive energy and grace. She is a true warrior in every sense, and she has all my prayers for this new battle.June 29, 2013 at 12:06 pm #61478 Pati entered the hospital on Thursday, with the TIL side effects taking a toll on her. Hopefully, by collective good thoughts sent her way, she will recover to get new therapy.June 29, 2013 at 2:26 pm #61479jamesaParticipant Catherine,
Thank you for keeping us updated.
I am still praying that Pati will be a complete responder to her TIL treatment.
Pati is such a wonderful person and has done so much for so many.
Have her doctors determined that she has progressed and that she needs to look for another treatment? Is there anything that we can do to help her find another treatment?
Please keep us updated and tell her we are all praying for her and her family.
JamesJune 29, 2013 at 3:14 pm #61480pastwinnerParticipant
Thank you, Catherine, for letting us know what is happening with Pati. I send prayers and love to her and her family. Pati is such a source of strength, knowledge and inspiration – a gift to us all!
LearJune 29, 2013 at 4:16 pm #61481
She did not respond to the TIL as far as what I can perceive from the doctors. There are not really any other therapies for her to do at this juncture. She needs to first recover from the TIL/IL2 toxicity to her organs.June 29, 2013 at 5:21 pm #61482alankravitzParticipant Wishing you and your familly all the best. If anyone deserves to beat this thing it is you. Your efforts on our behalf and you stength will not go unrewarded.
AlanJune 29, 2013 at 6:24 pm #61483jamesaParticipant
Thanks for clarifying Pati’s condition.
Pati has posted that dabrafenib has worked for her in the past.
Is there anyway that (MIF) can petition for Pati to get her the GSK BRAF/Mek combo under “compassionate use”. I think that Pati tried herself but was turned down. However, Pati’s medical condition now might warrant another re-evaluation by GSK to give Pati the GSK drugs
Pati is too sick and certainly not in a position to fight with GSK to get their BRAF & MEK drugs.
This is just a thought that maybe MIF could help Pati get BRAF & MEK drugs under”compassionate use. Who know, maybe the combo drugs could be the “magic bullet” for Pati. Pati is running out of treatments.
I feel just terrible Pati. I am sure if she had the strength she would fight herself.
JamesJune 30, 2013 at 3:44 am #61484dkmcParticipant
It is not often I let myself cry, but I don’t think I can stand it if anything happens to Pati. She has been such a positive force in all of this. I follow her on line & think, as I do for all of us…buy some time…there is so much happening now for treatment. Such a harsh cancer this melanoma. Love from all of us to Pati…KarenJuly 1, 2013 at 6:50 pm #61485HeinParticipant Yesterday afternoon I have received a message from Pati’s husband that she is in very critical condition. Her condition is no effect of the TIL or IL2 itself, but Pati received targeted radiation a few weeks back on one tumor which showed no regression from the TIL and gave her a lot of pain. This radiation showed no effect and gave her a lot of side effects and dehydration. For this she was admitted in the hospital last week, where they also discovered that her platelets were very low. There is a really great risk of internal bleedings, bloodclogs or exhaustion and her doctors are not hopefull to be honest.
So please pray for Pati that her strong fightingspirit will pull her through once more.
Sorry I can’ t give you more positive news.
HeinJuly 1, 2013 at 7:23 pm #61486msue5Participant
Praying for you Pati
Mary SueJuly 1, 2013 at 7:35 pm #61487GillyParticipant
Thinking of all of them !
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