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May 1, 2013 at 2:15 pm #21229Catherine PooleKeymaster
Happy Day! Happy healing to her.May 1, 2013 at 4:49 pm #60309lizlizParticipant Lord, let the healing begin.May 1, 2013 at 7:08 pm #60310Shirley ZParticipant AWESOME news! Praying for a speedy recovery.
Shirley ZMay 1, 2013 at 11:13 pm #60311Sandalwood36Participant
This is outstanding news!
May God bless & watch over Patti during her recouperation!May 2, 2013 at 5:23 am #60312dkmcParticipant
Good luck wishes & love flowing your way!!! You know we all are thinking about you!
KarenMay 2, 2013 at 9:35 pm #60313AnonymousGuest
Yes!May 3, 2013 at 6:25 am #60314DianapParticipant Home, what a wonderful word xMay 3, 2013 at 8:04 pm #60315Mom2BeccaParticipant There’s no place like home! We join others in wishing Pati the best.May 5, 2013 at 9:23 pm #60316Catherine PooleKeymaster She is indeed home and adjusting. Here is her latest blog I was so happy to read and share:May 6, 2013 at 3:46 pm #60317patiParticipant Thank you Cathy ad my MIF family for your best wishes all along,
Like we know TIL and especially IL2 was hell for my body and i only got 4 cycles done….unlike Hein – who is a hero – I must confess it was really the worst thing I have ever done medically and I guess it would not be for everyone, especially if health is otherwise compromised (heart, lungs, liver, etc) but seeing the tumors disappear make it all worth it for us.
I am now dealing with minor post-issues post chemo and especially TIL and IL2 (bouts of fatigue feel like I need to learn everything again, slowly walk, etc, lack of appetite and mild nausea, loss of vision now corrected thanks to eye drops (!), and today I saw ear specialist who confirmed I have hearing loss in high frequencies which needs to be treated with intra-tympan cortisone injections (ouch….) again, all minor to melanoma growing up my neck and arm and now melting away so, trying to graceful take each “new” day as it comes.
Worth noting to those who have no other options or who want to give TIL a go before other options and they think they might qualify in EUROPE, the full on randomized trial with IPI and TIL will be recruiting across Europe between Denmark, UK (Christie’s) and NKI, maybe even possible in Switzerland (CHUV), many things are pending mostly related to funding and of course this is important as not all patients can raise 40-50k….of course most countries will try to recruit within countries to avoid cost for patients and hopefully get some support from local health systems. But Prof Haanen did say that the study will be running soon. As much as I think it was hell I think it could have been worst, when I read some other accounts of IL2 I think many of you have been through hell anyways as that is the tough part. I mean I have had an easy ride with IPI and anti-PD1 and only zelboraf gave me sh…but most warriors here have been through hell and back. It seems the TIL scientific community in general and data from NCI from Rosenberg et al will hopefully clarify the need of IL2 in the game and whether the move to lower dose IL2 (like the team in Leiden is doing) or in combination with other (IPI or anti-PD1) is not the future of TIL.
Of course I had no choice, but do not regret one single second having done it, especially seeing the tumors going away and having Hein and others as examples of complete responders to aim for, even a partial response is not something I would look down on as I am home and again enjoying life with my family whereas I was writing my will in february and contemplating other darker routes.May 6, 2013 at 9:50 pm #60318AnonymousGuest
It’s wonderful to hear from you Pati and I’m glad to see you climbing out of the TIL pit for some much needed rest and quiet peace and embraced by family.
Much warmth to you.
JeffMay 7, 2013 at 1:24 am #60319Shirley ZParticipant
Pati …. trying to be graceful. You are the epitome of graceful! Your strength and courage inspire me.
I hope every day is a little easier for you, and you will have much more time to make memories with your beautiful family.
Shirley ZMay 7, 2013 at 4:04 am #60320JonathanParticipant
Great news,Pati, sounds like being reborn. I’m sure you’ll take your time and savor every moment.
JonathanMay 7, 2013 at 10:07 am #60321buffcodyParticipant
It has been a joy to wake up this morning to your account of success with TIL. Such hope for all of us on this Forum too!
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