Dropping In
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Dropping In

› Forums › General Melanoma Community › Dropping In

  • Post
    • March 23, 2017 at 8:24 pm
    JoshF
    Participant

    Thought I'd drop in and say hello as it's been awhile. I hope everyone is doing well. I'm still trying to recover from TIL and have been very weak & lethargic. I was actually supposed to go to MDA this week for the Keytruda portion of the trial but too weak. I'm going to withdraw and do Keytruda at home. I've never been so physically impacted by this disease and the treatment. I had one sub-q shrink to nothing but that's it. It's been about 6 weeks since TIL infusion so I'm still holding on to hope this works. Not sure with performance status that I'd have many options left. I hope everyone is well, I saw Brian good news, saw Jake is doing good but having SRS…I didn't look past 1st page but I think of you all often. Blessings 

    Josh

Viewing 19 reply threads
  • Replies
      • March 23, 2017 at 8:27 pm
      Hukill
      Participant

      So happy to hear from you.

      • March 23, 2017 at 8:28 pm
      Hukill
      Participant

      Forgot to mention I had good news also. Scan last week had 1 met left in my lungs at less than 2mm in size.

      • March 23, 2017 at 8:29 pm
      Jahendry12
      Participant

      So great to hear from you Josh.  I think of you often and have been wondering you have been doing with the TIL.  Keeping you in my prayers and hoping the TIL will do its thing.

      • March 23, 2017 at 8:30 pm
      jennunicorn
      Participant

      Always happy to hear from you Josh. Hope you start to get some strength back soon.

      • March 23, 2017 at 8:35 pm
      jenny22
      Participant

      Hey Josh- so glad you "dropped in"……sorry  to hear you've been and so sorry you've been so knocked out…hoping its doing soem good on the insudes and that soon you'll have some strength back!!!!!!

      Always great to hear from you.

      best,

      jenny 

      • March 23, 2017 at 8:51 pm
      momof4boys
      Participant
      It’s so, so good to hear from you! Praying for better days to come.
      • March 23, 2017 at 9:41 pm
      Scooby123
      Participant

      Hi Josh,

      every time I have been on I have hoped for you to check in. So lovely to hear from you . Hoping Till kicks in soon for you Hun big hugs and keep strong.

      Scooby❤️❤️

      • March 23, 2017 at 10:27 pm
      Bubbles
      Participant

      Hey Joshie!  Sorry you have been feeling so badly and sorry for the limited response so far.  I am holding out big hopes for you and your treatment and ever so many other things for you and yours with all my strength.  And…I am not alone in that!!  So if you need to rest and take a break….we got you!  All of our energies are focused on your behalf!  That's what we're here for.  Rest up.  Get better.  Hang in there. Love you bunches, c

      • March 23, 2017 at 10:37 pm
      casagrayson
      Participant

      I got a bit smile on my face when I opened the site and saw you had posted.  It's SO good to hear from.  I'm sorry that the TIL has wiped you out so much, but praying that it is still doing its job.  Your cheerleading squad is still here and keeping up the momentum for you!!

        • March 23, 2017 at 10:43 pm
        casagrayson
        Participant

        Ugh.  Sorry about the typos.  Can't seem to edit.

         

      • March 23, 2017 at 10:48 pm
      BrianP
      Participant

      Great to hear from you Josh.  Hope that one sub-Q is a sign of things to come. Hang in there.

      Brian

        • March 23, 2017 at 11:54 pm
        vivian
        Participant

        Hey Josh!

        Great to hear from you but sorry you feel so icky.  I just wanted to tell you that almost 14 years ago I had a stem cell transplant for myelodysplastic syndrome.  An allogenic transplant is very similar to TIL, in that they smack down your immune system to nothing and then transplant good cells.  For the first month or two, I was so wiped out that after I walked to the front door of my house to answer the door, I almost always had to lie down on the foyer floor to rest up, before being able to return from whence I came!  They warned me I would be weak, but seriously, I had no idea… Now, all these many years later, I feel pretty awesome, despite the pesky, recurrent melanoma mets in my left lung.  You are way younger and stronger than I was at the time, so I have great hope that you will soon feel better!

        Holding you in the light,
        Lear

      • March 23, 2017 at 11:41 pm
      SABKLYN
      Participant

      Great to hear from you – hopefully the one vanishng sub-q is just the start!  All the best

       

      • March 23, 2017 at 11:50 pm
      Mark_DC
      Participant

      Josh, is great to see your smiling face again. Am really hoping the others will respond too. And that your strength will return, give it time. Good luck, prayers too, Mark

      • March 24, 2017 at 12:37 am
      snow white
      Participant

      so happy to see your post.  I am sure you are exhausted from TIL, it wreaks havoc on your system, but you are still ALIVE!!!  Wooohoooo!!!  i always have to in my heart and mind, keep plugging away.  Hoping your energy returns soon!!

      xo Jen

      • March 24, 2017 at 1:17 am
      Corinne
      Participant

      Josh, your update made my day!!! My Randy is still stable but I check this site almost everyday hoping to see an update from you. So many people share their courageous stories and I am always so inspired. Sorry you feel like poo right now. I am praying you get your strength back day by day and that the cancer will retreat more and more. What stories you are gonna have to inspire your grandkids someday.Love to you and yours, Corinne

      • March 24, 2017 at 3:23 am
      Momofjake
      Participant

      Oh thank you Josh!! I know it's not always easy to drop in. We appreciate it so much. This is a tough group who brings a lot of strength, love and prayer to your world. Just hang in there. That one sub-q is saying something. Just relax and let it work its magic! Get your keytruda wherever. Know we are all praying hard and sending all good thoughts everyday to you!! Jake is home from SRS today. He is good. Oh josh, I want you to be better too. So badly. The sick days are so hard. 

      Love and prayers,

      kerri and Jake 

      • March 24, 2017 at 11:03 am
      debwray
      Participant

      Hi Josh 

      Your fan club is cheerleading for you again…

      Hope you are feeling brighter every day

      Love from Deb x

      • March 24, 2017 at 11:15 am
      tschmith
      Participant

      It's good to hear from you, Josh!  I was wondering how you are doing.  I had a TIL type of therapy at NIH and I felt exactly like you.  It takes time. Around the 6 week mark, I took very short walks outside which seemed to perk me up a little but I had no energy, didn't sleep much at all, and had zero appetite.  Don't know if you have those additional problems, but Remeron helped immensely.  I started Keytruda about 2 1/2 months after TIL and it worked like magic!!!!!  TIL didn't really do the trick on its own but combined with Keytruda…I saw results quickly.  I pray that happens to you too!!!!!!!!!  I'm now in remission.  

      We're all rooting for you!!!

      Terrie

      • March 24, 2017 at 2:02 pm
      cancersnewnormal
      Participant

      Always good to hear from you! You're kind of celeb status here, you tough son of a gun! 😉  Shrinking subQ is a good sign…. yes?  Thanks for taking the time to stop in! Hopefully you'll start getting some strength back sooner, rather than later! 

      • March 24, 2017 at 4:13 pm
      Mat
      Participant

      Josh, glad to hear about the sub-Q.  Get your rest–your strength will return.

      • March 26, 2017 at 1:27 am
      rabbits68
      Participant
      Praying for you as you wait for strength and good reports. I know you are glad it’s behind you, keep striving to get stronger!
        • April 14, 2017 at 4:41 pm
        jbronicki
        Participant

        Always hoping and praying for you Josh! Each time I check in I'm hoping to hear great news and recovery of your strength 🙂 

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