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Here we go

› Forums › General Melanoma Community › Here we go

  • Post
    • September 14, 2016 at 3:35 pm
    JoshF
    Participant

    At airport waiting for flight to Houston, which of course is delayed. The blood test showed liver enzymes dropped significantly. That was great news…thank God. Bad news is I went in patient portal and read radiologist report from scan last week. Overall impression with out getting into details was "worsening metastatic disease". That hurt because with the 3rd and last ipi dose being 8/8, I have to assume I didn't respond 2nd time around after having great response in 2013/2014. I feel like though we tried hard in past couple months…nothing has stopped this dreaded crap and therefore nothing got done.

    So I do Ct scan tonight at MDA, see Doc Friday, Brain MRI Sunday and then get moving into treatment phase next week.

    Not that anyone has crystal ball but what are chances something shows up in brain a month after gamma knife? I've bothered Kyle with private messages for the past week with this stuff…symptoms to look for etc…Either way they will need to ask for PI override. I need the cells and see if I can start beating this back. I know others have been in far worse places but it feels like I'm trending there. Believe me I want to fight but I need the treatment to fight with me. Yes I'm starting to feel desperate. Anxious to get to Houston and get show on road. Not sure if I'll be posting, I'm tired of all the sadness and suffering I read here but know that I think of and pray daily for all of you. Much love, support and healing to my MPIP Family!

    Be well!!

    Josh

Viewing 56 reply threads
  • Replies
      • September 14, 2016 at 3:48 pm
      Julie in SoCal
      Participant

      Yea Josh!  It's happening!  I'm so glad to hear that your liver enzymes have gone down, but like you, not so happy to hear "worsening metastic disease".  That sucks!  

      Praying that this trial completely evicts Mel from everwhere it has taken up residence!

      Belessings,

      Julie

       

      • September 14, 2016 at 3:48 pm
      Julie in SoCal
      Participant

      Yea Josh!  It's happening!  I'm so glad to hear that your liver enzymes have gone down, but like you, not so happy to hear "worsening metastic disease".  That sucks!  

      Praying that this trial completely evicts Mel from everwhere it has taken up residence!

      Belessings,

      Julie

       

      • September 14, 2016 at 3:48 pm
      Julie in SoCal
      Participant

      Yea Josh!  It's happening!  I'm so glad to hear that your liver enzymes have gone down, but like you, not so happy to hear "worsening metastic disease".  That sucks!  

      Praying that this trial completely evicts Mel from everwhere it has taken up residence!

      Belessings,

      Julie

       

      • September 14, 2016 at 3:50 pm
      youngann
      Participant

      Wishing you the very best. ::hugs::

      • September 14, 2016 at 3:50 pm
      youngann
      Participant

      Wishing you the very best. ::hugs::

      • September 14, 2016 at 3:50 pm
      youngann
      Participant

      Wishing you the very best. ::hugs::

      • September 14, 2016 at 4:12 pm
      Casitas1
      Participant

      Best of luck Josh!
       

      Paul

      • September 14, 2016 at 4:12 pm
      Casitas1
      Participant

      Best of luck Josh!
       

      Paul

      • September 14, 2016 at 4:12 pm
      Casitas1
      Participant

      Best of luck Josh!
       

      Paul

      • September 14, 2016 at 4:24 pm
      rabbits68
      Participant
      Praying for you!
      • September 14, 2016 at 4:24 pm
      rabbits68
      Participant
      Praying for you!
      • September 14, 2016 at 4:24 pm
      rabbits68
      Participant
      Praying for you!
      • September 14, 2016 at 4:27 pm
      cf91
      Participant

      Josh, I wish you the best of luck and may God keep His Hands over you! I don't post here often, but have kept up with your story.  I too have  had set backs but we keep on fighting!  Good luck and I'm praying for you.

      • September 14, 2016 at 4:27 pm
      cf91
      Participant

      Josh, I wish you the best of luck and may God keep His Hands over you! I don't post here often, but have kept up with your story.  I too have  had set backs but we keep on fighting!  Good luck and I'm praying for you.

      • September 14, 2016 at 4:27 pm
      cf91
      Participant

      Josh, I wish you the best of luck and may God keep His Hands over you! I don't post here often, but have kept up with your story.  I too have  had set backs but we keep on fighting!  Good luck and I'm praying for you.

      • September 14, 2016 at 4:54 pm
      casagrayson
      Participant

      Josh,

      I wish you all the best at MDA.  I know this is discouraging, but please keep up the fight, my friend.  And even if you don't feel like sharing all the details, please give us an "I'm still here and kickin'" post every few days, okay?  We worry when we don't hear from you.

      • September 14, 2016 at 4:54 pm
      casagrayson
      Participant

      Josh,

      I wish you all the best at MDA.  I know this is discouraging, but please keep up the fight, my friend.  And even if you don't feel like sharing all the details, please give us an "I'm still here and kickin'" post every few days, okay?  We worry when we don't hear from you.

      • September 14, 2016 at 4:54 pm
      casagrayson
      Participant

      Josh,

      I wish you all the best at MDA.  I know this is discouraging, but please keep up the fight, my friend.  And even if you don't feel like sharing all the details, please give us an "I'm still here and kickin'" post every few days, okay?  We worry when we don't hear from you.

      • September 14, 2016 at 4:57 pm
      Mat
      Participant

      Josh, wishing you the best.  Regarding your question, not counting a tumor in my optic nerve in 2015, I've had 2 brain tumors (a year apart) and was asymptomatic both times.

      • September 14, 2016 at 4:57 pm
      Mat
      Participant

      Josh, wishing you the best.  Regarding your question, not counting a tumor in my optic nerve in 2015, I've had 2 brain tumors (a year apart) and was asymptomatic both times.

      • September 14, 2016 at 4:57 pm
      Mat
      Participant

      Josh, wishing you the best.  Regarding your question, not counting a tumor in my optic nerve in 2015, I've had 2 brain tumors (a year apart) and was asymptomatic both times.

      • September 14, 2016 at 5:19 pm
      debwray
      Participant

      Hi Josh,

      Glad liiver lab results improved. Hope your journey is better than expected and that all goes smoothly at the hospital. Was glad you posted and said how you were getting on…had Been wondering about you. I ended up with a surgery on Mon.. But it was not for melanoma and was less extensive than feared but still waiting for lab results before any chance of discharge.

      Wishing you well

      Deb

      • September 14, 2016 at 5:19 pm
      debwray
      Participant

      Hi Josh,

      Glad liiver lab results improved. Hope your journey is better than expected and that all goes smoothly at the hospital. Was glad you posted and said how you were getting on…had Been wondering about you. I ended up with a surgery on Mon.. But it was not for melanoma and was less extensive than feared but still waiting for lab results before any chance of discharge.

      Wishing you well

      Deb

      • September 14, 2016 at 5:19 pm
      debwray
      Participant

      Hi Josh,

      Glad liiver lab results improved. Hope your journey is better than expected and that all goes smoothly at the hospital. Was glad you posted and said how you were getting on…had Been wondering about you. I ended up with a surgery on Mon.. But it was not for melanoma and was less extensive than feared but still waiting for lab results before any chance of discharge.

      Wishing you well

      Deb

      • September 14, 2016 at 6:44 pm
      Patrisa
      Participant

      Dear Josh, will be thinking if you and praying everything goes smoothly and for great results!

      You are equiped with a great plan, excellent team, just focus on the ultimate goal and grind until you get there!

      Love,

       

      Patrisa

      • September 14, 2016 at 6:44 pm
      Patrisa
      Participant

      Dear Josh, will be thinking if you and praying everything goes smoothly and for great results!

      You are equiped with a great plan, excellent team, just focus on the ultimate goal and grind until you get there!

      Love,

       

      Patrisa

      • September 14, 2016 at 6:44 pm
      Patrisa
      Participant

      Dear Josh, will be thinking if you and praying everything goes smoothly and for great results!

      You are equiped with a great plan, excellent team, just focus on the ultimate goal and grind until you get there!

      Love,

       

      Patrisa

      • September 14, 2016 at 6:55 pm
      Yvette
      Participant

      Praying for you!!

      • September 14, 2016 at 6:55 pm
      Yvette
      Participant

      Praying for you!!

      • September 14, 2016 at 6:55 pm
      Yvette
      Participant

      Praying for you!!

      • September 14, 2016 at 7:16 pm
      jamieth29
      Participant
      I’m pulling for ya buddy…it’s gonna work!!
      • September 14, 2016 at 7:16 pm
      jamieth29
      Participant
      I’m pulling for ya buddy…it’s gonna work!!
      • September 14, 2016 at 7:16 pm
      jamieth29
      Participant
      I’m pulling for ya buddy…it’s gonna work!!
      • September 14, 2016 at 8:19 pm
      Gwen in Maine
      Participant

      We're with you, Josh! Best wishes and hope all goes smoothly.

      Holding you in my heart,

      Gwen

      • September 14, 2016 at 8:19 pm
      Gwen in Maine
      Participant

      We're with you, Josh! Best wishes and hope all goes smoothly.

      Holding you in my heart,

      Gwen

      • September 14, 2016 at 8:19 pm
      Gwen in Maine
      Participant

      We're with you, Josh! Best wishes and hope all goes smoothly.

      Holding you in my heart,

      Gwen

      • September 14, 2016 at 8:24 pm
      jbronicki
      Participant

      So glad the liver numbers came down Josh!  Also glad you are able to head to MDA.  I can confirm that the weather is still hot and humid here and unfortunately (or fortunately) you just missed the Texans vs. Bears game this past Sunday (I see you are a Bears fan) and the Astros played the Cubs as well.

      All kidding aside, please let us know if you need anything at all!  My husband can actually walk to MDA from his work at Baylor and I work only 10 minutes away.  I was just over there last month for lunch in the Rotary house.  It's a great place to hang out for patients and family.

      If you need books, food, transportation, MLB updates, anything, we'll gladly bring it over or if you just need a support group or a quick lunch with friends.  

      As most of us know, the world only gets smaller as we age.  My daugther had to see an Endriconologist last month and for some reason I brought up John's Melanoma.  It turns out she is Dr. Hwu's sister!  I told her I've read all his research papers!  He does a lot with ACT/TIL over at MDA, not sure if he is part of your team as well.

      As celeste says, all fingers and toes crossed on this one.  Don't hesitate to reach out. Many prayers.

      • September 14, 2016 at 8:24 pm
      jbronicki
      Participant

      So glad the liver numbers came down Josh!  Also glad you are able to head to MDA.  I can confirm that the weather is still hot and humid here and unfortunately (or fortunately) you just missed the Texans vs. Bears game this past Sunday (I see you are a Bears fan) and the Astros played the Cubs as well.

      All kidding aside, please let us know if you need anything at all!  My husband can actually walk to MDA from his work at Baylor and I work only 10 minutes away.  I was just over there last month for lunch in the Rotary house.  It's a great place to hang out for patients and family.

      If you need books, food, transportation, MLB updates, anything, we'll gladly bring it over or if you just need a support group or a quick lunch with friends.  

      As most of us know, the world only gets smaller as we age.  My daugther had to see an Endriconologist last month and for some reason I brought up John's Melanoma.  It turns out she is Dr. Hwu's sister!  I told her I've read all his research papers!  He does a lot with ACT/TIL over at MDA, not sure if he is part of your team as well.

      As celeste says, all fingers and toes crossed on this one.  Don't hesitate to reach out. Many prayers.

      • September 14, 2016 at 8:24 pm
      jbronicki
      Participant

      So glad the liver numbers came down Josh!  Also glad you are able to head to MDA.  I can confirm that the weather is still hot and humid here and unfortunately (or fortunately) you just missed the Texans vs. Bears game this past Sunday (I see you are a Bears fan) and the Astros played the Cubs as well.

      All kidding aside, please let us know if you need anything at all!  My husband can actually walk to MDA from his work at Baylor and I work only 10 minutes away.  I was just over there last month for lunch in the Rotary house.  It's a great place to hang out for patients and family.

      If you need books, food, transportation, MLB updates, anything, we'll gladly bring it over or if you just need a support group or a quick lunch with friends.  

      As most of us know, the world only gets smaller as we age.  My daugther had to see an Endriconologist last month and for some reason I brought up John's Melanoma.  It turns out she is Dr. Hwu's sister!  I told her I've read all his research papers!  He does a lot with ACT/TIL over at MDA, not sure if he is part of your team as well.

      As celeste says, all fingers and toes crossed on this one.  Don't hesitate to reach out. Many prayers.

      • September 14, 2016 at 8:55 pm
      jenny22
      Participant

      Hey Josh-

      Obviously happy to hear about decresasing liver enzymes, and not at all happy about other….

      Sending you good thoughts…..in massive quantities.

      Hoping for some good news after things get going at MDA.

      Thinking about you….

      Best,

      jenny

      • September 14, 2016 at 8:55 pm
      jenny22
      Participant

      Hey Josh-

      Obviously happy to hear about decresasing liver enzymes, and not at all happy about other….

      Sending you good thoughts…..in massive quantities.

      Hoping for some good news after things get going at MDA.

      Thinking about you….

      Best,

      jenny

      • September 14, 2016 at 8:55 pm
      jenny22
      Participant

      Hey Josh-

      Obviously happy to hear about decresasing liver enzymes, and not at all happy about other….

      Sending you good thoughts…..in massive quantities.

      Hoping for some good news after things get going at MDA.

      Thinking about you….

      Best,

      jenny

      • September 15, 2016 at 1:19 am
      BrianP
      Participant

      So glad to hear you are on your way Josh.  Prayers coming your way. 

      Brian

      • September 15, 2016 at 1:19 am
      BrianP
      Participant

      So glad to hear you are on your way Josh.  Prayers coming your way. 

      Brian

      • September 15, 2016 at 1:19 am
      BrianP
      Participant

      So glad to hear you are on your way Josh.  Prayers coming your way. 

      Brian

      • September 15, 2016 at 1:42 am
      Maria C
      Participant

      Josh, I'm going to hold on to the good news that your liver enzymes are way down and you are now solidly on track for your MDA trial. Wishing you only the best and truly believe this trial and you are meant to be. Please try to keep us posted!!

      • September 15, 2016 at 1:42 am
      Maria C
      Participant

      Josh, I'm going to hold on to the good news that your liver enzymes are way down and you are now solidly on track for your MDA trial. Wishing you only the best and truly believe this trial and you are meant to be. Please try to keep us posted!!

      • September 15, 2016 at 1:42 am
      Maria C
      Participant

      Josh, I'm going to hold on to the good news that your liver enzymes are way down and you are now solidly on track for your MDA trial. Wishing you only the best and truly believe this trial and you are meant to be. Please try to keep us posted!!

      • September 15, 2016 at 3:10 am
      Bubbles
      Participant

      Hey Joshie!

      What a ride. Keep plugging away. Glad to hear your LFT's were improved. Check! Now….I'm keeping fingers and toes crossed for good results on your remaining hoops! Keep hanging tough, love c

      • September 15, 2016 at 3:10 am
      Bubbles
      Participant

      Hey Joshie!

      What a ride. Keep plugging away. Glad to hear your LFT's were improved. Check! Now….I'm keeping fingers and toes crossed for good results on your remaining hoops! Keep hanging tough, love c

      • September 15, 2016 at 3:10 am
      Bubbles
      Participant

      Hey Joshie!

      What a ride. Keep plugging away. Glad to hear your LFT's were improved. Check! Now….I'm keeping fingers and toes crossed for good results on your remaining hoops! Keep hanging tough, love c

      • September 15, 2016 at 8:49 pm
      Jubes
      Participant

      Thanks for even taking the time to wish us all well with all you are going through! Another day another treatment and here's hoping this one has a lasting effect. Don't worry about the ipi not working…. For most of us it never worked. Please don't lose heart. All the very best

       

      anne-Louise 

      • September 15, 2016 at 8:49 pm
      Jubes
      Participant

      Thanks for even taking the time to wish us all well with all you are going through! Another day another treatment and here's hoping this one has a lasting effect. Don't worry about the ipi not working…. For most of us it never worked. Please don't lose heart. All the very best

       

      anne-Louise 

      • September 15, 2016 at 8:49 pm
      Jubes
      Participant

      Thanks for even taking the time to wish us all well with all you are going through! Another day another treatment and here's hoping this one has a lasting effect. Don't worry about the ipi not working…. For most of us it never worked. Please don't lose heart. All the very best

       

      anne-Louise 

      • September 22, 2016 at 1:57 am
      itsme.mimi
      Participant

      Praying for you to receive some good news, very soon. 

      • September 22, 2016 at 1:57 am
      itsme.mimi
      Participant

      Praying for you to receive some good news, very soon. 

      • September 22, 2016 at 1:57 am
      itsme.mimi
      Participant

      Praying for you to receive some good news, very soon. 

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