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- This topic has 23 replies, 18 voices, and was last updated 8 years, 2 months ago by
Momofjake.
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- February 21, 2017 at 1:35 am
Hi Everyone! It's been awhile and I've been staying in touch with Paul but figured it's time to update. So I did TIL beginning in February. Ended up with 14 billion cells which the PI for trial said was reasonable. I guess the trick to TIL is having the "right mix" of cells. My TIL cells had good viability so hopefully they can get some work done. I definitely need it. I'm scared, anxious…all the above but doing best to live life. I'm not thrilled about having to go back to Houston every 3 weeks for keytruda. Since I failed Nivo, didn't think it was good option but it's part of trial and doc says new immune system can provide different results. I'm praying that's the case. Outside of that I'm trying to get strength back. TIL does take it out of you for sure.
On another note, I lost a friend while in hospital. He was doing bio-chemo and his body gave out. It's hard part about this disease, you meet people and then they're suddenly gone. I'm heartbroken….he would've been 40 yesterday. I guess it's why I've been staying away from this forum. Too much suffering. Not to mention I haven't heard from Paul in 2 days.
Anyway, I'm hopeful and not ready to leave my kids so I'll fight on but I'm not going to lie, I'm wiped out. Cmon TCELLS!!!!
Josh
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- February 21, 2017 at 1:47 am
Hi Josh, thank you for writing and checking in – your news seems relatively good, seems all is going to plan which is great. Have been praying for you, Paul, and others on this crazy board. You sound great and i hope this will work. And keytruda seemed to work for me (have seen some results though still not entirely sure) maybe your doctor is right and it will work too.
this board is often difficult and saddening / stressful to read, but also a great source of information and ideas, and i hope support too.
so i wish you well and will keep praying for you, until next time you check in (and go on and live your life!)
good luck Mark
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- February 21, 2017 at 1:52 am
Oh, Joshie! So very good to hear from you. I can only imagine how miserable you are just now with all you are dealing with physically and emotionally! But…you are strong and tough. Hopefully these cells will get busy and get things done!! I am sorry for your loss. I wonder what kind of weird-o I am that I continue to expose my heart to melanoma world. But…it IS my world. I have suffered many losses since 2003. In exxchange, I have gained the gift of so many beautiful souls whose spirits and lives have been ever so much greater than any sorrows they have shared. Hang in there. much love, c
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- February 21, 2017 at 2:22 am
Hi Josh-
SOOO Happy to see your post. Things sound like they are moving in the right direction. I hope those 14 billion cells can crush MEL and then Keytruda can finish it off.
Soo very sorry to hear about your friend, those are the hearbreakers.
As I sit here typing, I too am a bit anxious….tomorrow I have all my scans (4 CTS followed by Brain MRI)…..hoping for only good news, but you know how stress provoking these can be.
I AM SO SOO PLEASED to see an update from you, and even hear some hope back in your voice (or words…)
Sending only good thoughts, for you, Paul, Jamie, Adrianna and so many others (where is jamie????)
Get some rest and get your stength back….and feel better…
jenny
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- February 21, 2017 at 2:30 am
Great to hear from you Josh. Praying for those TCells to do their thing and conquer the beast. So very sorry about your friend. Sometimes I'm afraid to come on this board because it breaks my heart to hear about people's suffering….but, there is so much good here as well and those suffering find hope & advice from many awesome people. Keep fighting Josh! Work on getting that strength back.
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- February 21, 2017 at 4:02 am
Hey Josh! I had a TIL-like gene therapy at NIH followed by Keytruda for a year (June 2014-2015) and here I am, in remission. I hope you get good results too!!!! I know how wiped out you feel. It just takes a while before you begin to perk up. I had no appetite and couldn't sleep. Ugh! They prescribed Remeron, an anti-depressant that helps with both of those problems as well as the lovely anxiety. I was able to finally sleep and had an appetite. I took it for about 2 months. I didn't start Keytruda right away…was released from NIH in mid-April and didn't receive my first infusion of Keytruda until the beginning of July. It worked quickly! Keytruda wasn't part of the clinical trial. My gene transfer didn't really do the trick so I got into an extended access for Pembro at Georgetown. However, Dr. Atkins considered it a combination therapy.
I'm sorry you lost a friend. It's so hard. I still think of Artie, Jerry, and others often. They would want us to keep fighting and of course we will. I think this will work for you Josh, I really do.
All my best to you and praying for fantastic results…
Terrie
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- February 21, 2017 at 4:02 am
Hey Josh! I had a TIL-like gene therapy at NIH followed by Keytruda for a year (June 2014-2015) and here I am, in remission. I hope you get good results too!!!! I know how wiped out you feel. It just takes a while before you begin to perk up. I had no appetite and couldn't sleep. Ugh! They prescribed Remeron, an anti-depressant that helps with both of those problems as well as the lovely anxiety. I was able to finally sleep and had an appetite. I took it for about 2 months. I didn't start Keytruda right away…was released from NIH in mid-April and didn't receive my first infusion of Keytruda until the beginning of July. It worked quickly! Keytruda wasn't part of the clinical trial. My gene transfer didn't really do the trick so I got into an extended access for Pembro at Georgetown. However, Dr. Atkins considered it a combination therapy.
I'm sorry you lost a friend. It's so hard. I still think of Artie, Jerry, and others often. They would want us to keep fighting and of course we will. I think this will work for you Josh, I really do.
All my best to you and praying for fantastic results…
Terrie
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- February 21, 2017 at 4:20 am
So good to hear from you Josh, always cheering for you… and your T cells! Kick some butt!
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- February 21, 2017 at 5:55 am
Man was I happy to see your name on the board!!! So glad to know that you are still fighting. I am so sorry to hear of the loss of your friend, I know this hits way to close to home. I hope and pray that those T cells do there thing and get you on the path to feeling much better. I to am worried about Paul, I have kept in touch a bit through text, but havent seen him on here for a bit. Hang in there, your one tough dude!!!!!
xo Jen
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- February 21, 2017 at 6:19 am
Dear Josh,
we totally understand you not checking in so much lately, do whatever makes you feel more comfortable, just know we are all rooting for you, praying and hoping!
I know keytruda will do it's magic, it does for soo many without the help of the T soldiers, so you got this!!
Love,
Patrisa
p.s Paul, the same goes for you, we are your loyal cheerleaders!
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- February 21, 2017 at 7:04 pm
Hi Josh so nice to hear from you Hun. Sorry you feeling wiped out but let's hope these Tcells start and kick Mells arse for you. I agree been a lot of upset latley so let's hopfully start and have some good news stories. Thinking of you
Scooby xx big hug
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- February 21, 2017 at 9:17 pm
Josh!! So happy to hear from you! I'm so glad you got through the TIL treatment without too many struggles. Sorry you have to go back and forth to MD Anderson, but I'm proud of you for pushing on!!
We are all still here cheerleading for you every day, even if you don't get by to see us!
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- February 22, 2017 at 12:50 am
Sorry you have lost a friend, Josh, and I know you will be devstated about Paul.
You are so strong and those T-cells have a really good chance of doing some good work, you got through the hard part and now try to relax, recuperate and not be too anxious (if you can).
Thinking of you and sending positive vibes for those little ninja cells to do their stuff..
Maria
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- February 22, 2017 at 10:18 pm
So good to hear an update from you Josh and so sorry for your friend and his family, it's unthinkable at times.. And I'm visualizing TCELLS as I type this message, I'm visualizing them multiplying like gremlins! I completely understand about needing to stay off the forum. Everyone has to do their own analysis if more harm than good is done by being on the forum (by harm, I just mean the psychological toll). I too have to drop off now as my husband is doing ok right now until the next scans and sometimes the forum is overwhelming and not sure if I'm doing more good for the cause or more psychological stress, not because of the people, but because of the very condensed and intense nature of the struggle. I'm dropping off now, but please reach out if you need anything at all in Houston, our offer of help and support always stand. It stands for anyone that needs to visit MD Anderson, we have room at our place any time. Many hugs to you and your amazing family Josh! I'll post again in summer with any updates.
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- March 11, 2017 at 1:07 pm
I was looking for you. Praying for those cells to do the job! I will post a Jake update! He is good:) It made its way to his brain…but his body is better. Win some lose some. He feels so good. SRS next week:) Stay strong! You give us so much hope! Prayers Josh!!
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