The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

How you be, Joshie?????

Forums General Melanoma Community How you be, Joshie?????

  • Post
    Bubbles
    Participant

    Hey Buddy,

    Just wanted you to know I've been thinking about you (and I'm sure I'm not alone!!!)!  Sent you a message via email/MPIP…but clearly that doesn't work because I didn't even get the copy I sent myself.  Oh well….  Hope you and your holy head (that's what I call mine!!!) is healing well.  Hang in there!! love, c

    PS ~ It may not seem like it just now….but there will come a day when you can have fun with this….though sometimes it will be at your own peril.  For instance, when I put an order incorrectly into the computer at work and nurses are confused, questioning, etc….I'm like, "Oops!  Sorry!  That's what happens when you have holes in your head!!!"  Of course, depending on the nurse, I may get a questioning look, a smirk, one who tries to knock another hole in it, or…"Oh, H#LL NO!!!! You're not playing that one, sister!!!"  Yeah, sympathy is not really one of the options!!!!  Love you!!!!  c

Viewing 23 reply threads
  • Replies
      Lee Parlier
      Participant

      I was thinking the same thing. Hope you are well Josh

      Lee Parlier
      Participant

      I was thinking the same thing. Hope you are well Josh

      Lee Parlier
      Participant

      I was thinking the same thing. Hope you are well Josh

      blessd4x
      Participant

      Im one of the quiet stalkers that look for guidence and hope among you all.   I was wondering the same thing.  I think of you and pray for you often Josh.  I think we all hope to hear from you soon.

      R

      blessd4x
      Participant

      Im one of the quiet stalkers that look for guidence and hope among you all.   I was wondering the same thing.  I think of you and pray for you often Josh.  I think we all hope to hear from you soon.

      R

      blessd4x
      Participant

      Im one of the quiet stalkers that look for guidence and hope among you all.   I was wondering the same thing.  I think of you and pray for you often Josh.  I think we all hope to hear from you soon.

      R

        KeepHeadUp
        Participant

        Thinking of you and your family too, Josh.  Guess I am a quiet stalker too…(smile) never referred to myself as that before…that sounds super creepy!   Sending prayers and healing your way.  I am sure you are way to busy kicking melanoma in the *** to post.  Thinking of you..

         

        KeepHeadUp
        Participant

        Thinking of you and your family too, Josh.  Guess I am a quiet stalker too…(smile) never referred to myself as that before…that sounds super creepy!   Sending prayers and healing your way.  I am sure you are way to busy kicking melanoma in the *** to post.  Thinking of you..

         

        KeepHeadUp
        Participant

        Thinking of you and your family too, Josh.  Guess I am a quiet stalker too…(smile) never referred to myself as that before…that sounds super creepy!   Sending prayers and healing your way.  I am sure you are way to busy kicking melanoma in the *** to post.  Thinking of you..

         

      keepthefaith11
      Participant
      Thinking the same thing. How are you feeling?

      Annie

      keepthefaith11
      Participant
      Thinking the same thing. How are you feeling?

      Annie

      keepthefaith11
      Participant
      Thinking the same thing. How are you feeling?

      Annie

      ed williams
      Participant

      Hey Josh congradulation on the fan club ( silent stalkers) this is a first!!! Melanoma has some benefits after all. Best Wishes!!!Ed

      ed williams
      Participant

      Hey Josh congradulation on the fan club ( silent stalkers) this is a first!!! Melanoma has some benefits after all. Best Wishes!!!Ed

      ed williams
      Participant

      Hey Josh congradulation on the fan club ( silent stalkers) this is a first!!! Melanoma has some benefits after all. Best Wishes!!!Ed

      SABKLYN
      Participant

      Same here Josh.  Hope to get an update soon, my friend 

        jbronicki
        Participant

        Ditto, hope to hear an update as well!  Fingers crossed!

         

        jbronicki
        Participant

        Ditto, hope to hear an update as well!  Fingers crossed!

         

        jbronicki
        Participant

        Ditto, hope to hear an update as well!  Fingers crossed!

         

      SABKLYN
      Participant

      Same here Josh.  Hope to get an update soon, my friend 

      SABKLYN
      Participant

      Same here Josh.  Hope to get an update soon, my friend 

      Polymath
      Participant

      Yo Josh,

      Another fan, wishing you a speedy and successful recovery from treatment.  Just was reading an article about CAR-T which is very similar to what you are doing, and there is a real ass-kicking phase to the treatment, but the light is shining on the other end of the tunnel.  We wait to hear from you soon.  

      Gary

      Polymath
      Participant

      Yo Josh,

      Another fan, wishing you a speedy and successful recovery from treatment.  Just was reading an article about CAR-T which is very similar to what you are doing, and there is a real ass-kicking phase to the treatment, but the light is shining on the other end of the tunnel.  We wait to hear from you soon.  

      Gary

      Polymath
      Participant

      Yo Josh,

      Another fan, wishing you a speedy and successful recovery from treatment.  Just was reading an article about CAR-T which is very similar to what you are doing, and there is a real ass-kicking phase to the treatment, but the light is shining on the other end of the tunnel.  We wait to hear from you soon.  

      Gary

      JoshF
      Participant

      Ok…I'm aggravated. I typed out this long response only to have it disappear on me 🙁 So what probably better that I make it short, sweet and to the point. And yes Celeste I don't think private message always works so well…at  least not for me….I'm not computer illiterate!!!!

      I really appreciate everyone checking in on me!!! And it's nice to be stalked by Anon's 😉

      Gamma Knife was quite an experience….the halo or harness…whatever they screw into your head….yikes!!!! Yes I have the holes in the head and oh baby my head/scalp is still numb. Eyes swelled up real nice but getting better daily. The neurosurgeon, radiation onc and medical physicist were great. They went through the MRI and how detailed they are with the 1mm slice…3-D…all of the above. They treated 4 spots…a 7-8mm and 3 others that were 2-3 mm. They were very optimistic and said treatment is very effective. They said hopefully this is it but this is a treatment option in the future if needed, they've treated many folks multiple times….I say to this crap….stay out of my head!!!! Nice to know it's an option though

      So this delays my trial at MDA by 2 weeks. Infusion was to be Sept 8 but will now be Sept 22nd. I'm bummed as I have a good batch of cells down there that tested very strongly for killing ability against melanoma….I need them back!!!! They were also able to grow TIL from tumors they took out at the end of June so there's another option. My local onc and Dr. Davies at MDA have decided that I would skip last dose of ipi, don't want to risk side effects which made me go to ER in first place and ultimately find brain mets. I go for stomach issues…find brain mets. Needless to say, I haven't had gastro isssues or anything of significance….think it was something I ate and I panicked. My issues with ipi this time have been mostly low grade fevers that come & go,mild chills at times. . Onc says not unusual as it's inflammatory response to ipi. It's what can happen when immune system tries to kick in. I did have a sub-q about 5mm near left pec/shoulder area that is gone. I had nodule cut off left ribcage and that came back necrotic tissue…didn't stain positive or test positive for melanoma. The scalp was re-excised to get clear margins…got the all good there. So it's been an interesting few weeks but I'm glad I'm kicking and screaming.

      And since I'm trying to be proactive as possible, I went to see Dr. Jason Luke at U of Chicago to reestablish relationship and he was talking about combo trials with molecules and so on. He also mentioned a trial that was starting and described it as a smart bomb chemo. I googled it and found some info but didn't dig too deep…hard to see out of slits in my eyes :). Seriously, anyone hear anything about this? He said there's a lot in pipeline and hopefully things that will provide benefit for patients….especially understanding the mechanisms of why people don't respond or do and then progress. I just said you all need to hurry up…I only like reading good stories here. I don't like my heart broken by seeing people struggle. So I probably made this post longer than the original…yes I'm just a nut!! I love you all and so appreciate you reaching out; especially you Celeste!!!

      Joshie

      JoshF
      Participant

      Ok…I'm aggravated. I typed out this long response only to have it disappear on me 🙁 So what probably better that I make it short, sweet and to the point. And yes Celeste I don't think private message always works so well…at  least not for me….I'm not computer illiterate!!!!

      I really appreciate everyone checking in on me!!! And it's nice to be stalked by Anon's 😉

      Gamma Knife was quite an experience….the halo or harness…whatever they screw into your head….yikes!!!! Yes I have the holes in the head and oh baby my head/scalp is still numb. Eyes swelled up real nice but getting better daily. The neurosurgeon, radiation onc and medical physicist were great. They went through the MRI and how detailed they are with the 1mm slice…3-D…all of the above. They treated 4 spots…a 7-8mm and 3 others that were 2-3 mm. They were very optimistic and said treatment is very effective. They said hopefully this is it but this is a treatment option in the future if needed, they've treated many folks multiple times….I say to this crap….stay out of my head!!!! Nice to know it's an option though

      So this delays my trial at MDA by 2 weeks. Infusion was to be Sept 8 but will now be Sept 22nd. I'm bummed as I have a good batch of cells down there that tested very strongly for killing ability against melanoma….I need them back!!!! They were also able to grow TIL from tumors they took out at the end of June so there's another option. My local onc and Dr. Davies at MDA have decided that I would skip last dose of ipi, don't want to risk side effects which made me go to ER in first place and ultimately find brain mets. I go for stomach issues…find brain mets. Needless to say, I haven't had gastro isssues or anything of significance….think it was something I ate and I panicked. My issues with ipi this time have been mostly low grade fevers that come & go,mild chills at times. . Onc says not unusual as it's inflammatory response to ipi. It's what can happen when immune system tries to kick in. I did have a sub-q about 5mm near left pec/shoulder area that is gone. I had nodule cut off left ribcage and that came back necrotic tissue…didn't stain positive or test positive for melanoma. The scalp was re-excised to get clear margins…got the all good there. So it's been an interesting few weeks but I'm glad I'm kicking and screaming.

      And since I'm trying to be proactive as possible, I went to see Dr. Jason Luke at U of Chicago to reestablish relationship and he was talking about combo trials with molecules and so on. He also mentioned a trial that was starting and described it as a smart bomb chemo. I googled it and found some info but didn't dig too deep…hard to see out of slits in my eyes :). Seriously, anyone hear anything about this? He said there's a lot in pipeline and hopefully things that will provide benefit for patients….especially understanding the mechanisms of why people don't respond or do and then progress. I just said you all need to hurry up…I only like reading good stories here. I don't like my heart broken by seeing people struggle. So I probably made this post longer than the original…yes I'm just a nut!! I love you all and so appreciate you reaching out; especially you Celeste!!!

      Joshie

      JoshF
      Participant

      Ok…I'm aggravated. I typed out this long response only to have it disappear on me 🙁 So what probably better that I make it short, sweet and to the point. And yes Celeste I don't think private message always works so well…at  least not for me….I'm not computer illiterate!!!!

      I really appreciate everyone checking in on me!!! And it's nice to be stalked by Anon's 😉

      Gamma Knife was quite an experience….the halo or harness…whatever they screw into your head….yikes!!!! Yes I have the holes in the head and oh baby my head/scalp is still numb. Eyes swelled up real nice but getting better daily. The neurosurgeon, radiation onc and medical physicist were great. They went through the MRI and how detailed they are with the 1mm slice…3-D…all of the above. They treated 4 spots…a 7-8mm and 3 others that were 2-3 mm. They were very optimistic and said treatment is very effective. They said hopefully this is it but this is a treatment option in the future if needed, they've treated many folks multiple times….I say to this crap….stay out of my head!!!! Nice to know it's an option though

      So this delays my trial at MDA by 2 weeks. Infusion was to be Sept 8 but will now be Sept 22nd. I'm bummed as I have a good batch of cells down there that tested very strongly for killing ability against melanoma….I need them back!!!! They were also able to grow TIL from tumors they took out at the end of June so there's another option. My local onc and Dr. Davies at MDA have decided that I would skip last dose of ipi, don't want to risk side effects which made me go to ER in first place and ultimately find brain mets. I go for stomach issues…find brain mets. Needless to say, I haven't had gastro isssues or anything of significance….think it was something I ate and I panicked. My issues with ipi this time have been mostly low grade fevers that come & go,mild chills at times. . Onc says not unusual as it's inflammatory response to ipi. It's what can happen when immune system tries to kick in. I did have a sub-q about 5mm near left pec/shoulder area that is gone. I had nodule cut off left ribcage and that came back necrotic tissue…didn't stain positive or test positive for melanoma. The scalp was re-excised to get clear margins…got the all good there. So it's been an interesting few weeks but I'm glad I'm kicking and screaming.

      And since I'm trying to be proactive as possible, I went to see Dr. Jason Luke at U of Chicago to reestablish relationship and he was talking about combo trials with molecules and so on. He also mentioned a trial that was starting and described it as a smart bomb chemo. I googled it and found some info but didn't dig too deep…hard to see out of slits in my eyes :). Seriously, anyone hear anything about this? He said there's a lot in pipeline and hopefully things that will provide benefit for patients….especially understanding the mechanisms of why people don't respond or do and then progress. I just said you all need to hurry up…I only like reading good stories here. I don't like my heart broken by seeing people struggle. So I probably made this post longer than the original…yes I'm just a nut!! I love you all and so appreciate you reaching out; especially you Celeste!!!

      Joshie

        Bubbles
        Participant

        Oh, Joshie! So good to hear from you! Sorry for everything. I can relate to your personal description….I thought I looked like  a shar pei after my zappage! The halo part is the worst! Anyhow…you're done with that now! Rest up! Shrink down! Hang on a bit longer and get your super cells. Your Chicago doc was right. Lot's of good stuff in process. Hopefully, not anything you're gonna need…but we'll figure it out as we go! Keep us posted. Love, c

        Bubbles
        Participant

        Oh, Joshie! So good to hear from you! Sorry for everything. I can relate to your personal description….I thought I looked like  a shar pei after my zappage! The halo part is the worst! Anyhow…you're done with that now! Rest up! Shrink down! Hang on a bit longer and get your super cells. Your Chicago doc was right. Lot's of good stuff in process. Hopefully, not anything you're gonna need…but we'll figure it out as we go! Keep us posted. Love, c

        Bubbles
        Participant

        Oh, Joshie! So good to hear from you! Sorry for everything. I can relate to your personal description….I thought I looked like  a shar pei after my zappage! The halo part is the worst! Anyhow…you're done with that now! Rest up! Shrink down! Hang on a bit longer and get your super cells. Your Chicago doc was right. Lot's of good stuff in process. Hopefully, not anything you're gonna need…but we'll figure it out as we go! Keep us posted. Love, c

        Mat
        Participant

        Josh, glad to hear that you're doing well and have promising treatment options and a good plan.

        Mat
        Participant

        Josh, glad to hear that you're doing well and have promising treatment options and a good plan.

        Mat
        Participant

        Josh, glad to hear that you're doing well and have promising treatment options and a good plan.

        Maria C
        Participant

        Oh Josh, I've been following your story, had this page up last night and feeling a bit dismayed that you hadn't responded, then refreshed it just now when I woke up and there you are!!! Thrilled to hear from you and so grateful for your persistence in responding (I know what it's like to write a long, thoughtful response just to have it wiped away by some cyber-witch!}. And grateful to Celeste for checking in on you because I think we were all worried that we hadn't heard…

        So sorry for all this crap you're going through (my husband stepped barefoot in dog crap yesterday coming up the stairs with his coffee – you should have heard him holler & curse – I should kick & scream that much every time I pull off my head scarf and see what immunotherapy, surgery & radiation have done to my head of curls!!). But I can't help thinking the stomach issues you had were a blessing in disguise because they led to the discovery of the brain mets EARLY when it's easily treatable. Now you'll be on strict MRI surveillance so if anything else pesky happens up there they'll continue to catch things early.

        Sounds like you have an incredible medical team that have all their swords up, protecting you with all they've got in this latest battle. But we all believe you WILL win the war!! 

        So good to hear from you!

        P.S. Hours have passed since I started writing this – that mischevous  cyberwitch again…

         

        Maria C
        Participant

        Oh Josh, I've been following your story, had this page up last night and feeling a bit dismayed that you hadn't responded, then refreshed it just now when I woke up and there you are!!! Thrilled to hear from you and so grateful for your persistence in responding (I know what it's like to write a long, thoughtful response just to have it wiped away by some cyber-witch!}. And grateful to Celeste for checking in on you because I think we were all worried that we hadn't heard…

        So sorry for all this crap you're going through (my husband stepped barefoot in dog crap yesterday coming up the stairs with his coffee – you should have heard him holler & curse – I should kick & scream that much every time I pull off my head scarf and see what immunotherapy, surgery & radiation have done to my head of curls!!). But I can't help thinking the stomach issues you had were a blessing in disguise because they led to the discovery of the brain mets EARLY when it's easily treatable. Now you'll be on strict MRI surveillance so if anything else pesky happens up there they'll continue to catch things early.

        Sounds like you have an incredible medical team that have all their swords up, protecting you with all they've got in this latest battle. But we all believe you WILL win the war!! 

        So good to hear from you!

        P.S. Hours have passed since I started writing this – that mischevous  cyberwitch again…

         

        Maria C
        Participant

        Oh Josh, I've been following your story, had this page up last night and feeling a bit dismayed that you hadn't responded, then refreshed it just now when I woke up and there you are!!! Thrilled to hear from you and so grateful for your persistence in responding (I know what it's like to write a long, thoughtful response just to have it wiped away by some cyber-witch!}. And grateful to Celeste for checking in on you because I think we were all worried that we hadn't heard…

        So sorry for all this crap you're going through (my husband stepped barefoot in dog crap yesterday coming up the stairs with his coffee – you should have heard him holler & curse – I should kick & scream that much every time I pull off my head scarf and see what immunotherapy, surgery & radiation have done to my head of curls!!). But I can't help thinking the stomach issues you had were a blessing in disguise because they led to the discovery of the brain mets EARLY when it's easily treatable. Now you'll be on strict MRI surveillance so if anything else pesky happens up there they'll continue to catch things early.

        Sounds like you have an incredible medical team that have all their swords up, protecting you with all they've got in this latest battle. But we all believe you WILL win the war!! 

        So good to hear from you!

        P.S. Hours have passed since I started writing this – that mischevous  cyberwitch again…

         

        SABKLYN
        Participant

        Good to hear from you!  Looking forward to you hitting MDA and plugging into those Rocky Balboa cells they've been training!

        SABKLYN
        Participant

        Good to hear from you!  Looking forward to you hitting MDA and plugging into those Rocky Balboa cells they've been training!

        SABKLYN
        Participant

        Good to hear from you!  Looking forward to you hitting MDA and plugging into those Rocky Balboa cells they've been training!

        Gwen in Maine
        Participant

        You're truly inspirational, Josh! Thanks for posting.

        Gwen

        Gwen in Maine
        Participant

        You're truly inspirational, Josh! Thanks for posting.

        Gwen

        Gwen in Maine
        Participant

        You're truly inspirational, Josh! Thanks for posting.

        Gwen

        BrianP
        Participant

        Thanks for the update Josh.  Glad to hear you are still keeping on. 

        Brian

        BrianP
        Participant

        Thanks for the update Josh.  Glad to hear you are still keeping on. 

        Brian

        BrianP
        Participant

        Thanks for the update Josh.  Glad to hear you are still keeping on. 

        Brian

        Jahendry12
        Participant

        Great to hear from you Josh.  Thanks for giving us an update.  We all keep praying for more treatment options as well as success stories.  Hang in there!

        Just fyi that my husband has been a patient of Dr. Lukes for 2 years now and he is awesome!

        Jahendry12
        Participant

        Great to hear from you Josh.  Thanks for giving us an update.  We all keep praying for more treatment options as well as success stories.  Hang in there!

        Just fyi that my husband has been a patient of Dr. Lukes for 2 years now and he is awesome!

        Jahendry12
        Participant

        Great to hear from you Josh.  Thanks for giving us an update.  We all keep praying for more treatment options as well as success stories.  Hang in there!

        Just fyi that my husband has been a patient of Dr. Lukes for 2 years now and he is awesome!

      ed williams
      Participant

      Hi Josh, take a look at the links with Dr. Omid Hamid, the second link at about the 17min mark gets into Antibody Drug Conjugates, I think this is what you might be looking for! It is from a couple of years ago. Best wishes!!!Ed   https://www.youtube.com/watch?v=10nUgi5R9UE     https://www.youtube.com/watch?v=cv7LaNBlghU

      ed williams
      Participant

      Hi Josh, take a look at the links with Dr. Omid Hamid, the second link at about the 17min mark gets into Antibody Drug Conjugates, I think this is what you might be looking for! It is from a couple of years ago. Best wishes!!!Ed   https://www.youtube.com/watch?v=10nUgi5R9UE     https://www.youtube.com/watch?v=cv7LaNBlghU

      ed williams
      Participant

      Hi Josh, take a look at the links with Dr. Omid Hamid, the second link at about the 17min mark gets into Antibody Drug Conjugates, I think this is what you might be looking for! It is from a couple of years ago. Best wishes!!!Ed   https://www.youtube.com/watch?v=10nUgi5R9UE     https://www.youtube.com/watch?v=cv7LaNBlghU

        JoshF
        Participant

        Just a wealth of info Ed…appreciate it. I actually considered going to see Hamid, never heard back from their online clinical trial inquiry which is fine. I just need my current plan to go through; see what we can do with that.

        Josh

        JoshF
        Participant

        Just a wealth of info Ed…appreciate it. I actually considered going to see Hamid, never heard back from their online clinical trial inquiry which is fine. I just need my current plan to go through; see what we can do with that.

        Josh

        jamieth29
        Participant
        Glad your doing good Josh. Sounds like you have a good plan and good reasons to be optimistic it will work.
        jamieth29
        Participant
        Glad your doing good Josh. Sounds like you have a good plan and good reasons to be optimistic it will work.
        jamieth29
        Participant
        Glad your doing good Josh. Sounds like you have a good plan and good reasons to be optimistic it will work.
        JoshF
        Participant

        Just a wealth of info Ed…appreciate it. I actually considered going to see Hamid, never heard back from their online clinical trial inquiry which is fine. I just need my current plan to go through; see what we can do with that.

        Josh

Viewing 23 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.