My 18 day journey to MDA
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My 18 day journey to MDA

› Forums › General Melanoma Community › My 18 day journey to MDA

  • Post
    • October 8, 2016 at 1:53 am
    JoshF
    Participant

    Hi everyone! It's been a bit since I posted. August and beginning of Sept was rough. Liver all out of whack, bunch more tumors. Needless to say, I made it down to Houston and did all the baseline scans and qualified for trial. Thank you God!! Unfortunately my disease didn't slow down. It's upsetting because I had such a stretch of years with low tumor burden. None of the docs can explain it. Anyway I have days of feeling good and days like today where I can't get out of bed and believe this crap is killing me. My heart is broken because I know realize how ugly this can be. Just hate people suffering. Enough of that!

    i received 22.4B cells back into my body. Everything went well with that. A couple hours later I started on low dose IL-2 injections. Finished my 28th and final dose yesterday. Thinking this is part of why I feel crappy…at least hoping. The next night I received 1st dose of ipi. So apparently my cells tested well against Mart-1 positive melanoma tumor. How the pertri dish translates to body will tell that story. But basically, the PI said the cells are the army, Ipi is a weapon we give the army and the IL-2 is for cell proliferation. My concern was doing ipi again since I responded once and clearly not this last time. Cells are primed so hopefully ipi is useful army!!! Amazing research down there…fighting to be optimistic but feeling crappy. It was nice to personally meet Brian! Hope everyone is well! 

    Josh

Viewing 38 reply threads
  • Replies
      • October 8, 2016 at 2:14 am
      Momofjake
      Participant

      Josh!!!!!

      I check in everyday looking for you, then say a little prayer in my heart for you! So happy you posted! I am sorry you are so sick. Treatments are hard to get excited about when you are in the thick of them.  They are grueling but you know better than most, they can work!! You can do it Josh! One day at a time. Let those cells fight for you and kill it again!! 

      Thinking about you all the time, hang in friend!!

      Kerri

      • October 8, 2016 at 2:14 am
      Momofjake
      Participant

      Josh!!!!!

      I check in everyday looking for you, then say a little prayer in my heart for you! So happy you posted! I am sorry you are so sick. Treatments are hard to get excited about when you are in the thick of them.  They are grueling but you know better than most, they can work!! You can do it Josh! One day at a time. Let those cells fight for you and kill it again!! 

      Thinking about you all the time, hang in friend!!

      Kerri

        • October 8, 2016 at 1:06 pm
        JoshF
        Participant

        Thank you Kerri! I'm really praying this works! All the feeling crappy and being miserable would be a small price to pay if this does work. Let's pray that it does!! I appreciate you checking in on me!! I hope Jake is doing great!!!

        Josh

        • October 8, 2016 at 1:06 pm
        JoshF
        Participant

        Thank you Kerri! I'm really praying this works! All the feeling crappy and being miserable would be a small price to pay if this does work. Let's pray that it does!! I appreciate you checking in on me!! I hope Jake is doing great!!!

        Josh

        • October 8, 2016 at 1:06 pm
        JoshF
        Participant

        Thank you Kerri! I'm really praying this works! All the feeling crappy and being miserable would be a small price to pay if this does work. Let's pray that it does!! I appreciate you checking in on me!! I hope Jake is doing great!!!

        Josh

      • October 8, 2016 at 2:14 am
      Momofjake
      Participant

      Josh!!!!!

      I check in everyday looking for you, then say a little prayer in my heart for you! So happy you posted! I am sorry you are so sick. Treatments are hard to get excited about when you are in the thick of them.  They are grueling but you know better than most, they can work!! You can do it Josh! One day at a time. Let those cells fight for you and kill it again!! 

      Thinking about you all the time, hang in friend!!

      Kerri

      • October 8, 2016 at 11:10 am
      Bubbles
      Participant

      Hey Joshie!

      I know you have been put through an emotional wringer with the progression and complications – and most certainly a physical one with the treatment – cell infusion, IL2, AND ipi! I'd be in a corner sniveling! (Think Loki after being pounded by Thor in The Avengers!) You, on the otherhand, are one tough dude! Hang in there, sweetie. Try to rest up from your ordeal. When is your next ipi infusion? You and Brian P are certainly awesome ratties leading the way for all of us with this trial! Love, c

      • October 8, 2016 at 11:10 am
      Bubbles
      Participant

      Hey Joshie!

      I know you have been put through an emotional wringer with the progression and complications – and most certainly a physical one with the treatment – cell infusion, IL2, AND ipi! I'd be in a corner sniveling! (Think Loki after being pounded by Thor in The Avengers!) You, on the otherhand, are one tough dude! Hang in there, sweetie. Try to rest up from your ordeal. When is your next ipi infusion? You and Brian P are certainly awesome ratties leading the way for all of us with this trial! Love, c

      • October 8, 2016 at 11:10 am
      Bubbles
      Participant

      Hey Joshie!

      I know you have been put through an emotional wringer with the progression and complications – and most certainly a physical one with the treatment – cell infusion, IL2, AND ipi! I'd be in a corner sniveling! (Think Loki after being pounded by Thor in The Avengers!) You, on the otherhand, are one tough dude! Hang in there, sweetie. Try to rest up from your ordeal. When is your next ipi infusion? You and Brian P are certainly awesome ratties leading the way for all of us with this trial! Love, c

        • October 8, 2016 at 11:13 am
        Bubbles
        Participant

        I should have said the Hulk! Hard to keep superheros straight when you're right there, Josh! Hee hee! C

        • October 8, 2016 at 11:13 am
        Bubbles
        Participant

        I should have said the Hulk! Hard to keep superheros straight when you're right there, Josh! Hee hee! C

        • October 8, 2016 at 11:13 am
        Bubbles
        Participant

        I should have said the Hulk! Hard to keep superheros straight when you're right there, Josh! Hee hee! C

        • October 8, 2016 at 1:04 pm
        JoshF
        Participant

        Thanks Celeste!! Next week is #2 ipi infusion. Then back in 3 weeks for scans and #3 infusion. They said to give it time to work. Trying to be patient and real optimistic because I think TIL would be next…yikes!! I appreciate the love & support!!!

        Joshie

        • October 8, 2016 at 1:04 pm
        JoshF
        Participant

        Thanks Celeste!! Next week is #2 ipi infusion. Then back in 3 weeks for scans and #3 infusion. They said to give it time to work. Trying to be patient and real optimistic because I think TIL would be next…yikes!! I appreciate the love & support!!!

        Joshie

        • October 8, 2016 at 1:04 pm
        JoshF
        Participant

        Thanks Celeste!! Next week is #2 ipi infusion. Then back in 3 weeks for scans and #3 infusion. They said to give it time to work. Trying to be patient and real optimistic because I think TIL would be next…yikes!! I appreciate the love & support!!!

        Joshie

      • October 8, 2016 at 1:20 pm
      Maria C
      Participant

      So good to hear from you Josh and glad to know you're at least feeling well enough to post!! I joined a cancer support group recently and visualization is part of the group think. Here's hoping you find a visualation that works for you when you're not feeling so well (army-weapons, superheroes, white lights or…??)

      • October 8, 2016 at 1:20 pm
      Maria C
      Participant

      So good to hear from you Josh and glad to know you're at least feeling well enough to post!! I joined a cancer support group recently and visualization is part of the group think. Here's hoping you find a visualation that works for you when you're not feeling so well (army-weapons, superheroes, white lights or…??)

      • October 8, 2016 at 1:20 pm
      Maria C
      Participant

      So good to hear from you Josh and glad to know you're at least feeling well enough to post!! I joined a cancer support group recently and visualization is part of the group think. Here's hoping you find a visualation that works for you when you're not feeling so well (army-weapons, superheroes, white lights or…??)

      • October 8, 2016 at 2:14 pm
      debwray
      Participant

      Hi Josh,

      Good to hear from you in person. It was also good to get news via Brian that you were getting treatment as inclusion in the trial did sound scarily precarious.

      Thank you for letting us follow the various twists and turns..it helps more than you may know to see new treatments in action and how the process might go, roadblocks and everything . 

      Wishing you all the very best of luck with the TIl treatment combo package and that the side effects are minimal. Lots of goodwill coming your way over the net….

      Deb

       

       

       

      • October 8, 2016 at 2:14 pm
      debwray
      Participant

      Hi Josh,

      Good to hear from you in person. It was also good to get news via Brian that you were getting treatment as inclusion in the trial did sound scarily precarious.

      Thank you for letting us follow the various twists and turns..it helps more than you may know to see new treatments in action and how the process might go, roadblocks and everything . 

      Wishing you all the very best of luck with the TIl treatment combo package and that the side effects are minimal. Lots of goodwill coming your way over the net….

      Deb

       

       

       

      • October 8, 2016 at 2:14 pm
      debwray
      Participant

      Hi Josh,

      Good to hear from you in person. It was also good to get news via Brian that you were getting treatment as inclusion in the trial did sound scarily precarious.

      Thank you for letting us follow the various twists and turns..it helps more than you may know to see new treatments in action and how the process might go, roadblocks and everything . 

      Wishing you all the very best of luck with the TIl treatment combo package and that the side effects are minimal. Lots of goodwill coming your way over the net….

      Deb

       

       

       

      • October 8, 2016 at 4:01 pm
      Patrisa
      Participant

      Dear Josh,

      You are paving the way for many other patients and i can't even begin to express my gratitude and admiration towards you!

      Your are such a brave, smart and beautiful person, from the bottom of my heart i wish for your treatment to be the winner for you!

      I  am sure your little warriors will kick mels ass, ipi was a winner for you in the past, and my gut feeling is that those two in combo will be something to celebrate in the near future…

      Sending lots of love and prayers your way from Slovenia!

      Patrisa

       

      • October 8, 2016 at 4:01 pm
      Patrisa
      Participant

      Dear Josh,

      You are paving the way for many other patients and i can't even begin to express my gratitude and admiration towards you!

      Your are such a brave, smart and beautiful person, from the bottom of my heart i wish for your treatment to be the winner for you!

      I  am sure your little warriors will kick mels ass, ipi was a winner for you in the past, and my gut feeling is that those two in combo will be something to celebrate in the near future…

      Sending lots of love and prayers your way from Slovenia!

      Patrisa

       

      • October 8, 2016 at 4:01 pm
      Patrisa
      Participant

      Dear Josh,

      You are paving the way for many other patients and i can't even begin to express my gratitude and admiration towards you!

      Your are such a brave, smart and beautiful person, from the bottom of my heart i wish for your treatment to be the winner for you!

      I  am sure your little warriors will kick mels ass, ipi was a winner for you in the past, and my gut feeling is that those two in combo will be something to celebrate in the near future…

      Sending lots of love and prayers your way from Slovenia!

      Patrisa

       

      • October 8, 2016 at 10:26 pm
      WithinMySkin
      Participant

      Hey Josh! I'm so sorry to hear you're not feeling well. Keep your head and spirits up…your body is a war zone right now with your army of cells going on the attack. Rest, pray, and visualize those cells doing their thing ninja style! Sneak attack with those melanoma cells getting sliced and diced! We're all rooting for you!

      Lauren

      • October 8, 2016 at 10:26 pm
      WithinMySkin
      Participant

      Hey Josh! I'm so sorry to hear you're not feeling well. Keep your head and spirits up…your body is a war zone right now with your army of cells going on the attack. Rest, pray, and visualize those cells doing their thing ninja style! Sneak attack with those melanoma cells getting sliced and diced! We're all rooting for you!

      Lauren

      • October 8, 2016 at 10:26 pm
      WithinMySkin
      Participant

      Hey Josh! I'm so sorry to hear you're not feeling well. Keep your head and spirits up…your body is a war zone right now with your army of cells going on the attack. Rest, pray, and visualize those cells doing their thing ninja style! Sneak attack with those melanoma cells getting sliced and diced! We're all rooting for you!

      Lauren

      • October 9, 2016 at 10:11 pm
      Corinne
      Participant

      Josh,

      Randy and I are rooting for you and have been watching for your post. Thank-you for sharing the good, the bad, and the ugly. I just believe you will rise out of the trenches very soon! 

      Still praying, and believing.

      Corinne and Randy

      • October 9, 2016 at 10:11 pm
      Corinne
      Participant

      Josh,

      Randy and I are rooting for you and have been watching for your post. Thank-you for sharing the good, the bad, and the ugly. I just believe you will rise out of the trenches very soon! 

      Still praying, and believing.

      Corinne and Randy

      • October 9, 2016 at 10:11 pm
      Corinne
      Participant

      Josh,

      Randy and I are rooting for you and have been watching for your post. Thank-you for sharing the good, the bad, and the ugly. I just believe you will rise out of the trenches very soon! 

      Still praying, and believing.

      Corinne and Randy

      • October 10, 2016 at 12:41 am
      triciad
      Participant

      Team Josh…all the way!

      Josh, keep that optimistic attitude.  We are all praying for you!  I hope you feel better soon, and pray this treatment is your silver bullet. 

      Hugs,

      Triciad

      • October 10, 2016 at 12:41 am
      triciad
      Participant

      Team Josh…all the way!

      Josh, keep that optimistic attitude.  We are all praying for you!  I hope you feel better soon, and pray this treatment is your silver bullet. 

      Hugs,

      Triciad

      • October 10, 2016 at 12:41 am
      triciad
      Participant

      Team Josh…all the way!

      Josh, keep that optimistic attitude.  We are all praying for you!  I hope you feel better soon, and pray this treatment is your silver bullet. 

      Hugs,

      Triciad

      • October 10, 2016 at 1:42 am
      jennunicorn
      Participant

      Hope you start feeling better soon Josh! You've got a lot of folks rooting for you! 

      Sending positive vibes and hugs your way,

      • October 10, 2016 at 1:42 am
      jennunicorn
      Participant

      Hope you start feeling better soon Josh! You've got a lot of folks rooting for you! 

      Sending positive vibes and hugs your way,

      • October 10, 2016 at 1:42 am
      jennunicorn
      Participant

      Hope you start feeling better soon Josh! You've got a lot of folks rooting for you! 

      Sending positive vibes and hugs your way,

      • October 11, 2016 at 1:57 am
      kylez
      Participant

      Hi Josh,

      Good luck to you, and good luck to your armies. One thing's for sure, your body's never seen an army quite like this. I hope today's an up day.

      -Kyle

      • October 11, 2016 at 1:57 am
      kylez
      Participant

      Hi Josh,

      Good luck to you, and good luck to your armies. One thing's for sure, your body's never seen an army quite like this. I hope today's an up day.

      -Kyle

      • October 11, 2016 at 1:57 am
      kylez
      Participant

      Hi Josh,

      Good luck to you, and good luck to your armies. One thing's for sure, your body's never seen an army quite like this. I hope today's an up day.

      -Kyle

      • October 11, 2016 at 2:54 am
      Mark_DC
      Participant

      Josh,

      am rooting for you too (and have been for months!)

      appreciate your great advice and help for others on this board too

      good luck and go for it

      • October 11, 2016 at 2:54 am
      Mark_DC
      Participant

      Josh,

      am rooting for you too (and have been for months!)

      appreciate your great advice and help for others on this board too

      good luck and go for it

      • October 11, 2016 at 2:54 am
      Mark_DC
      Participant

      Josh,

      am rooting for you too (and have been for months!)

      appreciate your great advice and help for others on this board too

      good luck and go for it

      • October 11, 2016 at 11:54 am
      SABKLYN
      Participant

      Great t hear fom you Josh.  Between the TIL and ipi though, I'd imagine that could be expected.  As another responder to this post mentioned, this triggered a battle in your body.  The entire arsenal is deployed on your behalf.  Between that and the prayers of your family and the MRF family, you have a great shot at the desired outcome.  

      All the best,

      Stan

      • October 11, 2016 at 11:54 am
      SABKLYN
      Participant

      Great t hear fom you Josh.  Between the TIL and ipi though, I'd imagine that could be expected.  As another responder to this post mentioned, this triggered a battle in your body.  The entire arsenal is deployed on your behalf.  Between that and the prayers of your family and the MRF family, you have a great shot at the desired outcome.  

      All the best,

      Stan

      • October 11, 2016 at 11:54 am
      SABKLYN
      Participant

      Great t hear fom you Josh.  Between the TIL and ipi though, I'd imagine that could be expected.  As another responder to this post mentioned, this triggered a battle in your body.  The entire arsenal is deployed on your behalf.  Between that and the prayers of your family and the MRF family, you have a great shot at the desired outcome.  

      All the best,

      Stan

      • October 12, 2016 at 1:26 am
      JoshF
      Participant

      Thank you all so much, I appreciate all the love, prayers and support I get from MPIP family. I'm truly a blessed man. I'm appreciative and grateful to you all! The toughest, most sincere and loving people. I pray that treatments are soon outpacing this terrible disease we deal with. Love and blessings to you all!

      Josh

      • October 12, 2016 at 1:26 am
      JoshF
      Participant

      Thank you all so much, I appreciate all the love, prayers and support I get from MPIP family. I'm truly a blessed man. I'm appreciative and grateful to you all! The toughest, most sincere and loving people. I pray that treatments are soon outpacing this terrible disease we deal with. Love and blessings to you all!

      Josh

      • October 12, 2016 at 1:26 am
      JoshF
      Participant

      Thank you all so much, I appreciate all the love, prayers and support I get from MPIP family. I'm truly a blessed man. I'm appreciative and grateful to you all! The toughest, most sincere and loving people. I pray that treatments are soon outpacing this terrible disease we deal with. Love and blessings to you all!

      Josh

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