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- This topic has 21 replies, 7 voices, and was last updated 7 years, 10 months ago by
Gwen in Maine.
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- June 23, 2016 at 7:09 pm
Well things continue to creep along. I'm almost a month out post surgery. I've got a long week coming up at MD Anderson. I'm entering the Phase 2 trial of Adoptive Cell Theraphy combined with low dose IL-2 and ipi.
I found out today that my blood tested positive for HLA-A201. I had already knew I was HLA-A2 positive but needed a higher resolution blood test for the 01. I also tested positive for the Mart-1. So I'm scheduled to have CT Scan, do cardio work up, see doc and leukpheresis done on Thursday. I'm also going to see surgeon to have tumore harvested in hopes they can create TIL's in the event that I need it in future. I certainly hope not but after dealing with this for 5 years, you just never know. It's the damn roller coaster Maria talked about in earlier post. Not to mention that any ache or pain is related to the crap that lurks in my body. I'm praying this is another complete response for me that is DURABLE!!!! The key word that eludes so many of us.
Thank you to everyone who has chimed in with support, information and just genuinely caring for each other. It's difficult to relay to friends and family unless they've been in our shoes. You always hear….stay positive, stay strong etc… well that's another battle we all fight. Who doesn't fight to be positive or stay strong and fight through this…we all do but I'd be lying if I told you the darkness doesn't creep in. Everyone means well and I hold nothing against them but coming here I know everyone deals with much of the same so like I usually do, I give thanks for all of you. Be well.
Josh
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- June 23, 2016 at 10:39 pm
Hey Joshie!!!
So glad a treatment plan is in place and you have jumped through most of the hoops!!! That's great! So am I understanding correctly that for your most immediate plan they will be harvesting your TIL's through the leukophoresis? And then you will be administered those cells along with the IL2 and ipi??? And then you'll be seeing about collecting/growing TIL's via a tumor sample, if possible, for later if needed? Straighten me out if I've mixed it up…but I think that matches what I understood from before.
Have you ever had leukophoresis? It's a bit weird but not bad. I had to have it several times in the course of my trial for study purposes when they were looking at all our T cells and lord knows what else….cause they didn't share it with us! At any rate…it's kinda like donating platelets if you ever did that. For my process, they started an IV in both arms….drew blood out of one…ran it through a machine to collect the products they wanted…and reinfused the remainder back into me via the other arm. They had a time limit that they would run it. Sorry, I can't remember how long it was…not that it would necessarily be the same for you. Or…once the quantity of product they wanted to collect was sufficient…they would let you be done. Most of the time, I beat the clock so didn't have to be tied up for too long. I think how good an IV they get started is the key to speed!!!
I'll be thinking of you! Try to enjoy your weekend. Are you feeling healed up from your surgery? Hang in there. Love, c
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- June 23, 2016 at 10:39 pm
Hey Joshie!!!
So glad a treatment plan is in place and you have jumped through most of the hoops!!! That's great! So am I understanding correctly that for your most immediate plan they will be harvesting your TIL's through the leukophoresis? And then you will be administered those cells along with the IL2 and ipi??? And then you'll be seeing about collecting/growing TIL's via a tumor sample, if possible, for later if needed? Straighten me out if I've mixed it up…but I think that matches what I understood from before.
Have you ever had leukophoresis? It's a bit weird but not bad. I had to have it several times in the course of my trial for study purposes when they were looking at all our T cells and lord knows what else….cause they didn't share it with us! At any rate…it's kinda like donating platelets if you ever did that. For my process, they started an IV in both arms….drew blood out of one…ran it through a machine to collect the products they wanted…and reinfused the remainder back into me via the other arm. They had a time limit that they would run it. Sorry, I can't remember how long it was…not that it would necessarily be the same for you. Or…once the quantity of product they wanted to collect was sufficient…they would let you be done. Most of the time, I beat the clock so didn't have to be tied up for too long. I think how good an IV they get started is the key to speed!!!
I'll be thinking of you! Try to enjoy your weekend. Are you feeling healed up from your surgery? Hang in there. Love, c
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- June 23, 2016 at 10:39 pm
Hey Joshie!!!
So glad a treatment plan is in place and you have jumped through most of the hoops!!! That's great! So am I understanding correctly that for your most immediate plan they will be harvesting your TIL's through the leukophoresis? And then you will be administered those cells along with the IL2 and ipi??? And then you'll be seeing about collecting/growing TIL's via a tumor sample, if possible, for later if needed? Straighten me out if I've mixed it up…but I think that matches what I understood from before.
Have you ever had leukophoresis? It's a bit weird but not bad. I had to have it several times in the course of my trial for study purposes when they were looking at all our T cells and lord knows what else….cause they didn't share it with us! At any rate…it's kinda like donating platelets if you ever did that. For my process, they started an IV in both arms….drew blood out of one…ran it through a machine to collect the products they wanted…and reinfused the remainder back into me via the other arm. They had a time limit that they would run it. Sorry, I can't remember how long it was…not that it would necessarily be the same for you. Or…once the quantity of product they wanted to collect was sufficient…they would let you be done. Most of the time, I beat the clock so didn't have to be tied up for too long. I think how good an IV they get started is the key to speed!!!
I'll be thinking of you! Try to enjoy your weekend. Are you feeling healed up from your surgery? Hang in there. Love, c
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- June 23, 2016 at 11:41 pm
Hey Celeste!!!
You've got it all right! I was looking at the Loyola trial where they target tyrosinaise and HLA-A2. The MD Anderson is Mart-1 and HLA-A201 which is why I had to have the "higher resolution" HLA blood testing. My local oncologist liked the MD Anderson because it's phase 2 trial but also includes the ipi with the low dose IL-2. Loyola was just IL-2. I beat myself up over what is right option… I'm scared as heck. Every little pain, ache…I just want to run to ER. I'm freaking out about scans I have to have next week too….all the anxiety!!! I live in my head too much.
Yes, I'll be doing leukpheresis next week. The way you explained it is right on and how they explained it to me. Theywant those autologous CD 8+ cells I guess. They said it'd take about 4 hours and luckily I have good veins.
I will also be having a tumor harvested in the attempt to grow TIL's for future treatment option though I'd really like this to be it.
Since it takes about 8 weeks to grow cells they said I can pursue treatment and will let me know when to start wash out period. My local onc wants to try and get 2 rounds of ipi in. May have problem with insurance here because the MD Anderson trial doesn't pay for ipi…they bill insurance. Just more headaches….
I've healed up well from surgery and ready to go!!! I think I did tell you that in the past 2 weeksI've started getting vitiligo on my face. Nothing too crazy but it's there…around my mouth.
I'm off to Houston Sunday. I hate leaving my wife & kids but I've got to beat this for them….there are no other options. Thanks for checking in on me
XOXO
Josh
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- June 23, 2016 at 11:41 pm
Hey Celeste!!!
You've got it all right! I was looking at the Loyola trial where they target tyrosinaise and HLA-A2. The MD Anderson is Mart-1 and HLA-A201 which is why I had to have the "higher resolution" HLA blood testing. My local oncologist liked the MD Anderson because it's phase 2 trial but also includes the ipi with the low dose IL-2. Loyola was just IL-2. I beat myself up over what is right option… I'm scared as heck. Every little pain, ache…I just want to run to ER. I'm freaking out about scans I have to have next week too….all the anxiety!!! I live in my head too much.
Yes, I'll be doing leukpheresis next week. The way you explained it is right on and how they explained it to me. Theywant those autologous CD 8+ cells I guess. They said it'd take about 4 hours and luckily I have good veins.
I will also be having a tumor harvested in the attempt to grow TIL's for future treatment option though I'd really like this to be it.
Since it takes about 8 weeks to grow cells they said I can pursue treatment and will let me know when to start wash out period. My local onc wants to try and get 2 rounds of ipi in. May have problem with insurance here because the MD Anderson trial doesn't pay for ipi…they bill insurance. Just more headaches….
I've healed up well from surgery and ready to go!!! I think I did tell you that in the past 2 weeksI've started getting vitiligo on my face. Nothing too crazy but it's there…around my mouth.
I'm off to Houston Sunday. I hate leaving my wife & kids but I've got to beat this for them….there are no other options. Thanks for checking in on me
XOXO
Josh
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- June 23, 2016 at 11:41 pm
Hey Celeste!!!
You've got it all right! I was looking at the Loyola trial where they target tyrosinaise and HLA-A2. The MD Anderson is Mart-1 and HLA-A201 which is why I had to have the "higher resolution" HLA blood testing. My local oncologist liked the MD Anderson because it's phase 2 trial but also includes the ipi with the low dose IL-2. Loyola was just IL-2. I beat myself up over what is right option… I'm scared as heck. Every little pain, ache…I just want to run to ER. I'm freaking out about scans I have to have next week too….all the anxiety!!! I live in my head too much.
Yes, I'll be doing leukpheresis next week. The way you explained it is right on and how they explained it to me. Theywant those autologous CD 8+ cells I guess. They said it'd take about 4 hours and luckily I have good veins.
I will also be having a tumor harvested in the attempt to grow TIL's for future treatment option though I'd really like this to be it.
Since it takes about 8 weeks to grow cells they said I can pursue treatment and will let me know when to start wash out period. My local onc wants to try and get 2 rounds of ipi in. May have problem with insurance here because the MD Anderson trial doesn't pay for ipi…they bill insurance. Just more headaches….
I've healed up well from surgery and ready to go!!! I think I did tell you that in the past 2 weeksI've started getting vitiligo on my face. Nothing too crazy but it's there…around my mouth.
I'm off to Houston Sunday. I hate leaving my wife & kids but I've got to beat this for them….there are no other options. Thanks for checking in on me
XOXO
Josh
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- June 24, 2016 at 3:36 am
Hi Josh,
Wow, I am getting dizzy just trying to follow all they're doing for you (and to you!) at MD Anderson. I hope there's peace in knowing how many are rallying behind you to keep on keeping on.
I hear what you're saying about the "stay positive/stay strong" mantra everyone around you keeps on beating….always growing louder with each new scare (bad scan result). In my own world I can see how scared and shaken my loved ones are and it's so hard to watch them go through this.
Today I decided there could be only 2 outcomes, and they're both positive:
1. I beat the odds and become a Survivor.
2. I don't beat the odds, and my passing inspires my children to live their best lives in my honor.
Be well, tonight.
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- June 24, 2016 at 3:36 am
Hi Josh,
Wow, I am getting dizzy just trying to follow all they're doing for you (and to you!) at MD Anderson. I hope there's peace in knowing how many are rallying behind you to keep on keeping on.
I hear what you're saying about the "stay positive/stay strong" mantra everyone around you keeps on beating….always growing louder with each new scare (bad scan result). In my own world I can see how scared and shaken my loved ones are and it's so hard to watch them go through this.
Today I decided there could be only 2 outcomes, and they're both positive:
1. I beat the odds and become a Survivor.
2. I don't beat the odds, and my passing inspires my children to live their best lives in my honor.
Be well, tonight.
-
- June 24, 2016 at 3:36 am
Hi Josh,
Wow, I am getting dizzy just trying to follow all they're doing for you (and to you!) at MD Anderson. I hope there's peace in knowing how many are rallying behind you to keep on keeping on.
I hear what you're saying about the "stay positive/stay strong" mantra everyone around you keeps on beating….always growing louder with each new scare (bad scan result). In my own world I can see how scared and shaken my loved ones are and it's so hard to watch them go through this.
Today I decided there could be only 2 outcomes, and they're both positive:
1. I beat the odds and become a Survivor.
2. I don't beat the odds, and my passing inspires my children to live their best lives in my honor.
Be well, tonight.
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- June 24, 2016 at 10:50 am
Josh,
I think you made a great decision and I'm pulling for you to have great results!!! My husband has vitiligo too!! It started small with the Ipi /Nivo trial, but now it's almost all over his face. I'm sure on Celeste's blog there's an article on the positives of having it and I know she's shown pictures of herself having it. Please know that you and your family are in our prayers. Wishing you the very best!!!!
Maureen
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- June 24, 2016 at 10:50 am
Josh,
I think you made a great decision and I'm pulling for you to have great results!!! My husband has vitiligo too!! It started small with the Ipi /Nivo trial, but now it's almost all over his face. I'm sure on Celeste's blog there's an article on the positives of having it and I know she's shown pictures of herself having it. Please know that you and your family are in our prayers. Wishing you the very best!!!!
Maureen
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- June 24, 2016 at 10:50 am
Josh,
I think you made a great decision and I'm pulling for you to have great results!!! My husband has vitiligo too!! It started small with the Ipi /Nivo trial, but now it's almost all over his face. I'm sure on Celeste's blog there's an article on the positives of having it and I know she's shown pictures of herself having it. Please know that you and your family are in our prayers. Wishing you the very best!!!!
Maureen
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- June 24, 2016 at 4:05 pm
Josh,
I hope all goes smoothly next week at MDA. Like others here, I've felt so many of the emotions and worries that you post about and I really appreciate that you take time to write. Know that I am one of the many who will be sending positive thoughts your way.
Gwen
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- June 24, 2016 at 4:05 pm
Josh,
I hope all goes smoothly next week at MDA. Like others here, I've felt so many of the emotions and worries that you post about and I really appreciate that you take time to write. Know that I am one of the many who will be sending positive thoughts your way.
Gwen
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- June 24, 2016 at 4:05 pm
Josh,
I hope all goes smoothly next week at MDA. Like others here, I've felt so many of the emotions and worries that you post about and I really appreciate that you take time to write. Know that I am one of the many who will be sending positive thoughts your way.
Gwen
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