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August 11, 2012 at 9:39 pm #20541Catherine PooleKeymaster
Pati has had some news that sets her back a bit in treatment. I believe our community can come together and send her some good vibes, prayers, well wishes as she navigates this difficult path. All of you are good at this, so please keep her in your thoughts.August 11, 2012 at 11:53 pm #55837candi4Participant Catherine,
I am so sad to hear about Pati’s news.I will keep her in my prayers. Pati is such a wonderful person. Thank you for posting to give us a chance to pray for her.
CandiAugust 12, 2012 at 3:20 am #55838JonathanParticipant
I’m so sorry to hear of this, and hope it’s nothing major. Pati, let us hear from you, we are all holding you in our hearts.
JonathanAugust 12, 2012 at 12:22 pm #55839patiParticipant
Thanks Catherine and all,
Yes, not good news in pet ct scan friday after 3 months of IPI and DC vaccine, though my LDH had gone down to “normal range” at 480 at cycle 3 it has now risen. 3 weeks ago at cycle 4 it was 508 and friday 620 in 3 weeks! pet shows the lesions in my axilla are capting more though they do not seem bigger on CT, nor are they more palpable but I feel them twitching – the 2 lesions on psoas are capting more too though on CT one is stable one is visibly bigger, and there is a spot on lung that is not yet capting on CT scan….first time I get a bugger in an organ after almost 3 years stage IV…so psychologically I am “adapting”.
For me LDH has always shown when things are progressing, so I am looking for all options. Not many in EU and neither in US after having done chemo, IPI and zelboraf….anti-PD1 not yet available.
Thanks for the vibes and good throutghs and back to you all,
PAugust 12, 2012 at 8:47 pm #55840candi4Participant
You are an inspiration to me. I am on the Merck pd1 trial since 12/11. I am a responder. NED since 3/12.
For what’s is worth, Merck pd1 trial is stating that it is recruiting in Australia: Maybe this would work for you! Is BMS PD1 going to open in the EU?
Merck Sharp & Dohme (Australia) Pty Ltd. Recruiting
South Granville, Australia, NSW 2142
Contact: Gary Jankelowitz 61 297959962
I will pray for you. Please keep us posted.
CandiAugust 13, 2012 at 3:12 am #55841msue5Participant
I will be thinking of you and sending extra prayers. You have done so much for the European melanoma patients. Even though I am in the U.S. your info is relevant to all of us.
Mary SueAugust 14, 2012 at 6:43 pm #55842wim1Participant
I’m sorry to hear this news, I wish you the best and you will find another treatment that keeps you going on.
WimAugust 15, 2012 at 6:38 am #55843HeinParticipant
All my best wishes and hope for you. Keep fighting!
I got information from NKI they expect an Anti-PD1trial opening soon. Rumors say October in Holland and Belgium, probably BMS en Genentech.
HeinAugust 15, 2012 at 2:46 pm #55844CeceliaParticipant
Pati, Margaret and I are great meditators; we will be sending white light and good old-fashioned prayers as well.August 15, 2012 at 5:59 pm #55845patiParticipant Thanks for the good wishes, truth is I am well for today and in the last 2 days made 3 decisions,
1) I am in peace with dying whenever that will come, really, I thank Quentin for his teachings on dying “fully alive”, being there each day and integrating dying into life. When we said good bye we simply hugged and kissed and said see you on the other side
2) I know am not done YET, unfinished business is still a strong thing in my heart – thus I investigated all medical options to extend life a bit more so:
a) next week we re-induce with BRAF inhibitor (GSK this time) to control the tumors that are responsive to BRAF targeted therapy
b) mid september/ end september I line up for upcoming anti-PD1 trial in Paris (MERCK) and or Spain (BMS) for which I have high chances of being eligible
c) continue mindful meditation, spontaneous yoga sessions, Jean Paul Resseguier amazing body listing awareness work with Brigitte, fantastic eating thanks to my private chef (my husband), kiss and huggs and tickles sessions and readings with my kids every night and dark belgian chocolate anytime, friends, old and new, melanoma advocacy, academic work and business as usual.
Sending you light back!
PatiAugust 15, 2012 at 11:31 pm #55846JonathanParticipant
That sounds like an excellent treatment plan with options, and I’m optimistic you’ll get a first class response, one way or another. Do keep up your spirits, you are hardly done yet.
All the best,
JonathanAugust 16, 2012 at 2:48 am #55847Shirley ZParticipant
I am in awe of you. I feel so blessed that we have had the chance to know you.
There are no words that could ever express the love and gratitude that we feel for you. You cannot even begin to imagine the lives you have touched with your knowledge and compassion.
You will be in my thoughts and prayers. I pray that the kisses, hugs and tickles will continue for a long time and that each day will be filled with more memorable moments than the day before.
You are awesome Pati! We Love you! This doesn’t mean I’m giving up on you, just letting you know how much care.
Love and hugs,
Shirley ZAugust 16, 2012 at 5:42 pm #55848lak1Participant
Really thinking of you
Hawkins is doing TIL in Christies Manchester if you have funding.
Hoping Pd1 comes for you
LesleyAugust 16, 2012 at 5:53 pm #55849JenniParticipant
I just wanted to send my best wishes and say that you are an amazing inspiration and a rock for many, many people on this site. I admire your positive attitude and courage. Keep it up and enjoy those kiddos!!
JenniAugust 17, 2012 at 6:17 pm #55850Catherine PooleKeymaster
I do think Pati has some potentially good news about PD1. Fingers crossed.
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