› Forums › General Melanoma Community › How you be, Joshie?????
- This topic has 57 replies, 16 voices, and was last updated 7 years, 8 months ago by
Jahendry12.
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- August 24, 2016 at 1:21 pm
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
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- August 24, 2016 at 1:39 pm
I was thinking the same thing. Hope you are well Josh
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- August 24, 2016 at 1:39 pm
I was thinking the same thing. Hope you are well Josh
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- August 24, 2016 at 1:39 pm
I was thinking the same thing. Hope you are well Josh
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- August 24, 2016 at 6:07 pm
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
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- August 24, 2016 at 10:14 pm
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..
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- August 24, 2016 at 10:14 pm
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..
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- August 24, 2016 at 10:14 pm
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..
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- August 24, 2016 at 10:10 pm
Thinking the same thing. How are you feeling?Annie
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- August 24, 2016 at 10:10 pm
Thinking the same thing. How are you feeling?Annie
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- August 24, 2016 at 10:10 pm
Thinking the same thing. How are you feeling?Annie
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- August 24, 2016 at 10:23 pm
Hey Josh congradulation on the fan club ( silent stalkers) this is a first!!! Melanoma has some benefits after all. Best Wishes!!!Ed
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- August 24, 2016 at 10:23 pm
Hey Josh congradulation on the fan club ( silent stalkers) this is a first!!! Melanoma has some benefits after all. Best Wishes!!!Ed
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- August 24, 2016 at 10:23 pm
Hey Josh congradulation on the fan club ( silent stalkers) this is a first!!! Melanoma has some benefits after all. Best Wishes!!!Ed
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- August 25, 2016 at 2:11 am
Same here Josh. Hope to get an update soon, my friend
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- August 25, 2016 at 4:37 pm
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
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- August 25, 2016 at 4:37 pm
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
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- August 25, 2016 at 4:37 pm
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
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- August 26, 2016 at 2:56 am
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
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- August 26, 2016 at 2:56 am
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
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- August 26, 2016 at 2:56 am
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
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- August 26, 2016 at 3:53 am
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
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- August 26, 2016 at 3:53 am
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
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- August 26, 2016 at 3:53 am
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
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- August 26, 2016 at 1:11 pm
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…
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- August 26, 2016 at 1:11 pm
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…
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- August 26, 2016 at 1:11 pm
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…
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- August 26, 2016 at 5:31 pm
You're truly inspirational, Josh! Thanks for posting.
Gwen
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- August 26, 2016 at 5:31 pm
You're truly inspirational, Josh! Thanks for posting.
Gwen
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- August 26, 2016 at 5:31 pm
You're truly inspirational, Josh! Thanks for posting.
Gwen
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- August 30, 2016 at 1:47 pm
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!
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- August 30, 2016 at 1:47 pm
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!
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- August 30, 2016 at 1:47 pm
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!
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- August 26, 2016 at 2:00 pm
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
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- August 26, 2016 at 2:00 pm
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
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- August 26, 2016 at 2:00 pm
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
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