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Here we go

Forums General Melanoma Community Here we go

  • Post
    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
        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

           

          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

             

            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

               

              youngann
              Participant

                Wishing you the very best. ::hugs::

                youngann
                Participant

                  Wishing you the very best. ::hugs::

                  youngann
                  Participant

                    Wishing you the very best. ::hugs::

                    Casitas1
                    Participant

                      Best of luck Josh!
                       

                      Paul

                      Casitas1
                      Participant

                        Best of luck Josh!
                         

                        Paul

                        Casitas1
                        Participant

                          Best of luck Josh!
                           

                          Paul

                          rabbits68
                          Participant
                            Praying for you!
                            rabbits68
                            Participant
                              Praying for you!
                              rabbits68
                              Participant
                                Praying for you!
                                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.

                                  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.

                                    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.

                                      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.

                                        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.

                                          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.

                                            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.

                                              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.

                                                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.

                                                  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

                                                    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

                                                      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

                                                        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

                                                          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

                                                            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

                                                              Yvette
                                                              Participant

                                                                Praying for you!!

                                                                Yvette
                                                                Participant

                                                                  Praying for you!!

                                                                  Yvette
                                                                  Participant

                                                                    Praying for you!!

                                                                    jamieth29
                                                                    Participant
                                                                      I’m pulling for ya buddy…it’s gonna work!!
                                                                      jamieth29
                                                                      Participant
                                                                        I’m pulling for ya buddy…it’s gonna work!!
                                                                        jamieth29
                                                                        Participant
                                                                          I’m pulling for ya buddy…it’s gonna work!!
                                                                          Gwen in Maine
                                                                          Participant

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

                                                                            Holding you in my heart,

                                                                            Gwen

                                                                            Gwen in Maine
                                                                            Participant

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

                                                                              Holding you in my heart,

                                                                              Gwen

                                                                              Gwen in Maine
                                                                              Participant

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

                                                                                Holding you in my heart,

                                                                                Gwen

                                                                                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.

                                                                                  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.

                                                                                    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.

                                                                                      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

                                                                                        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

                                                                                          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

                                                                                            BrianP
                                                                                            Participant

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

                                                                                              Brian

                                                                                              BrianP
                                                                                              Participant

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

                                                                                                Brian

                                                                                                BrianP
                                                                                                Participant

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

                                                                                                  Brian

                                                                                                  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!!

                                                                                                    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!!

                                                                                                      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!!

                                                                                                        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

                                                                                                          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

                                                                                                            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

                                                                                                              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 

                                                                                                                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 

                                                                                                                  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 

                                                                                                                    itsme.mimi
                                                                                                                    Participant

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

                                                                                                                      itsme.mimi
                                                                                                                      Participant

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

                                                                                                                        itsme.mimi
                                                                                                                        Participant

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

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