› Forums › General Melanoma Community › Final Testing Done….Surgery
- This topic has 63 replies, 15 voices, and was last updated 7 years, 11 months ago by
Momofjake.
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- May 23, 2016 at 11:22 pm
Ok MPIP Family…here's where I'm at.
CT Scan on Friday…no results but surgeon wanted better visual of liver in the event something is there that he needs to go after. As he said…he'll go cherry picking but he likes to know where to start. He also is going to do an intra op ultrasound.
I did colonoscopy today to see if tumor had invaded large intestine as it's basically pushing up against it. I wasn't expecting anything right after but as soon as I was "with it" they told me that everything looked healthy and no invasion. Though he said that tumor can be attached to outside…but this test wouldn't confirm that…surgery will. GI doc said, this surgical onc is very thorough.
So surgery is Friday. I'm nervous. It's a big tumor that grew in 6 months. That really scares the crap out of me…is this crap just running rampant through my body???? Anyway, so as I'm trying to compartementalize everything….I've been looking at options. It's funny how the docs now don;t want to tell me what they feel is best. Anyway my thought process is obviously getting a complete response but if not keeping at bay with the hopes that something better comes along for all of us…
I remember a long time ago Charile S (I hope you read this buddy) said that taking the easy path isn't the best option all the time. I believe he was referring to IL-2 which I did…22 of the 24 planned bags.
I've read conflicting info on this Adoptive Cell Therapy. Not TIL…it's similar in all aspects except they draw T Cells from blood vs. tumor. I have this option local….or I can try to get into NIH or go to MD Anderson….not easy but I tend to agree with Charlie, I'll take the tough path for results. Are there better options or variances out there that are better.
Ipi combo wth Cavatak. Our dear friend who I love dearly, Celeste posted info on this as well as other trials including TIL etc… My attraction to this is that I respinded to ipi in past. Are chances good that I will again?? Do I save this if ACT doesn't work?
Current ONC said Ipi/Nivo even though nivo didn;t work…could have synergistic effect but said this would be last option if nothing else worked.
Anything else out there??? What about this IL-15 I've heard about… Not getting ahead of myself…just preparing to jump into next compartment after Friday.Love you all!!!
Josh
- Replies
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- May 23, 2016 at 11:31 pm
Josh, I just wanted to say I've been reading all of your recent posts and, as with the other awesome folks on here, am keeping good thoughts for you. This is a wild ride and I agree that compartmentalizing things really does help us get through to the next step without totally losing it.
Wishing you all the best during your surgery Friday, sounds like you'll be in good hands.
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- May 23, 2016 at 11:31 pm
Josh, I just wanted to say I've been reading all of your recent posts and, as with the other awesome folks on here, am keeping good thoughts for you. This is a wild ride and I agree that compartmentalizing things really does help us get through to the next step without totally losing it.
Wishing you all the best during your surgery Friday, sounds like you'll be in good hands.
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- May 23, 2016 at 11:31 pm
Josh, I just wanted to say I've been reading all of your recent posts and, as with the other awesome folks on here, am keeping good thoughts for you. This is a wild ride and I agree that compartmentalizing things really does help us get through to the next step without totally losing it.
Wishing you all the best during your surgery Friday, sounds like you'll be in good hands.
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- May 24, 2016 at 4:13 am
Just wanted to say I am thinking of you and praying for the best.
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- May 24, 2016 at 4:13 am
Just wanted to say I am thinking of you and praying for the best.
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- May 24, 2016 at 4:13 am
Just wanted to say I am thinking of you and praying for the best.
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- May 24, 2016 at 4:13 am
Just wanted to say I am thinking of you and praying for the best.
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- May 24, 2016 at 4:13 am
Just wanted to say I am thinking of you and praying for the best.
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- May 24, 2016 at 4:13 am
Just wanted to say I am thinking of you and praying for the best.
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- May 24, 2016 at 4:13 am
Just wanted to say I am thinking of you and praying for the best.
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- May 24, 2016 at 4:13 am
Just wanted to say I am thinking of you and praying for the best.
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- May 24, 2016 at 4:13 am
Just wanted to say I am thinking of you and praying for the best.
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- May 24, 2016 at 4:13 am
Just wanted to say I am thinking of you and praying for the best.
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- May 24, 2016 at 4:13 am
Just wanted to say I am thinking of you and praying for the best.
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- May 24, 2016 at 4:13 am
Just wanted to say I am thinking of you and praying for the best.
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- May 24, 2016 at 5:57 am
Hi Josh,
Good to hear things are not any worse than feared. How about getting past this surgery before stressing too much on the next step? We are all sending positive energies for your big day on Friday, and the healing thereafter. As for those big tumors, I mentioned I too have those, and although they can grow with uncanny speed, they do tend to max out at about 10cm, and as far as I know, there is no reason to think its running rampant. As for your multitude of options, the thing that struck me was the idea of holding out for ipi-nivo combo as a last resort. You had response to ipi alone, and yes, there's a chance you could respond again. There is a proven synergy with the CTLA-4 and anti PD-1 combo (ipi/nivo) and I struggle to understand why you should delay a treatment that has a good chance of working, for experimental treatments. It would seem that would be a first choice, and participating in a trial as something later since FDA approved options would be exhausted should the combo fail. Hang tough, surrender, and let your faith and love of family bring you strength.
Gary
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- May 24, 2016 at 5:57 am
Hi Josh,
Good to hear things are not any worse than feared. How about getting past this surgery before stressing too much on the next step? We are all sending positive energies for your big day on Friday, and the healing thereafter. As for those big tumors, I mentioned I too have those, and although they can grow with uncanny speed, they do tend to max out at about 10cm, and as far as I know, there is no reason to think its running rampant. As for your multitude of options, the thing that struck me was the idea of holding out for ipi-nivo combo as a last resort. You had response to ipi alone, and yes, there's a chance you could respond again. There is a proven synergy with the CTLA-4 and anti PD-1 combo (ipi/nivo) and I struggle to understand why you should delay a treatment that has a good chance of working, for experimental treatments. It would seem that would be a first choice, and participating in a trial as something later since FDA approved options would be exhausted should the combo fail. Hang tough, surrender, and let your faith and love of family bring you strength.
Gary
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- May 24, 2016 at 5:57 am
Hi Josh,
Good to hear things are not any worse than feared. How about getting past this surgery before stressing too much on the next step? We are all sending positive energies for your big day on Friday, and the healing thereafter. As for those big tumors, I mentioned I too have those, and although they can grow with uncanny speed, they do tend to max out at about 10cm, and as far as I know, there is no reason to think its running rampant. As for your multitude of options, the thing that struck me was the idea of holding out for ipi-nivo combo as a last resort. You had response to ipi alone, and yes, there's a chance you could respond again. There is a proven synergy with the CTLA-4 and anti PD-1 combo (ipi/nivo) and I struggle to understand why you should delay a treatment that has a good chance of working, for experimental treatments. It would seem that would be a first choice, and participating in a trial as something later since FDA approved options would be exhausted should the combo fail. Hang tough, surrender, and let your faith and love of family bring you strength.
Gary
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- May 24, 2016 at 6:57 am
Dear Josh,
I have been reading you whenever you post and I trully admire you and your spirit! I am not educated on the matter so I can´t give you any worthy advice just keep focused on the ultimate goal – reaching NED. Baby steps make for a marathon in the long run!
I trully believe in this day and age we almost can´t run of options and if one thing fails, there are many more to choose from. ONE WILL WORK FOR YOU and my intuition tells me this is going to be the one for you.
I strongly believe in surgery, you will get rid of most of your tumor burden, and afterwards the meds will take care of the rest.
Will be thinking of you on Friday and sending you positive energy!!!
Love,
Patrisa
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- May 24, 2016 at 6:57 am
Dear Josh,
I have been reading you whenever you post and I trully admire you and your spirit! I am not educated on the matter so I can´t give you any worthy advice just keep focused on the ultimate goal – reaching NED. Baby steps make for a marathon in the long run!
I trully believe in this day and age we almost can´t run of options and if one thing fails, there are many more to choose from. ONE WILL WORK FOR YOU and my intuition tells me this is going to be the one for you.
I strongly believe in surgery, you will get rid of most of your tumor burden, and afterwards the meds will take care of the rest.
Will be thinking of you on Friday and sending you positive energy!!!
Love,
Patrisa
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- May 24, 2016 at 6:57 am
Dear Josh,
I have been reading you whenever you post and I trully admire you and your spirit! I am not educated on the matter so I can´t give you any worthy advice just keep focused on the ultimate goal – reaching NED. Baby steps make for a marathon in the long run!
I trully believe in this day and age we almost can´t run of options and if one thing fails, there are many more to choose from. ONE WILL WORK FOR YOU and my intuition tells me this is going to be the one for you.
I strongly believe in surgery, you will get rid of most of your tumor burden, and afterwards the meds will take care of the rest.
Will be thinking of you on Friday and sending you positive energy!!!
Love,
Patrisa
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- May 24, 2016 at 3:23 pm
Josh, I, too, have been following your posts closely. I have two, large (8 cm) abdominal tumors that continue to grow, even though the others are stable. My surgeon wouldn't take them out except for palliative care even though I just want them gone! So, I asked to irradiate one and then joined a phase 2 trial with an ERK inhibitor (Braf pathway). Latest scans were iffy, but they haven't booted me off yet. You're right — it is a bit disconcerting that the docs now offer options but are really careful about not to give too much of an opinion. At any rate, I will hold you in my thoughts on Friday and hope for the best possible outcome. You're a trooper!
Gwen
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- May 24, 2016 at 3:23 pm
Josh, I, too, have been following your posts closely. I have two, large (8 cm) abdominal tumors that continue to grow, even though the others are stable. My surgeon wouldn't take them out except for palliative care even though I just want them gone! So, I asked to irradiate one and then joined a phase 2 trial with an ERK inhibitor (Braf pathway). Latest scans were iffy, but they haven't booted me off yet. You're right — it is a bit disconcerting that the docs now offer options but are really careful about not to give too much of an opinion. At any rate, I will hold you in my thoughts on Friday and hope for the best possible outcome. You're a trooper!
Gwen
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- May 24, 2016 at 3:23 pm
Josh, I, too, have been following your posts closely. I have two, large (8 cm) abdominal tumors that continue to grow, even though the others are stable. My surgeon wouldn't take them out except for palliative care even though I just want them gone! So, I asked to irradiate one and then joined a phase 2 trial with an ERK inhibitor (Braf pathway). Latest scans were iffy, but they haven't booted me off yet. You're right — it is a bit disconcerting that the docs now offer options but are really careful about not to give too much of an opinion. At any rate, I will hold you in my thoughts on Friday and hope for the best possible outcome. You're a trooper!
Gwen
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- May 24, 2016 at 4:48 pm
Josh – Sounds like you have your hands full. Good luck in the surgery on Friday… one step at a time.
Kevin
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- May 24, 2016 at 4:48 pm
Josh – Sounds like you have your hands full. Good luck in the surgery on Friday… one step at a time.
Kevin
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- May 24, 2016 at 4:48 pm
Josh – Sounds like you have your hands full. Good luck in the surgery on Friday… one step at a time.
Kevin
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- May 24, 2016 at 9:25 pm
Hi Josh-
I continue to follow your story….the decisions we have to make are never easy, and for me at least, always hard to make one and then try not to look back …
It sounds like you have a solid plan, and one you can feel pretty good about.
So for now, I want to wish you well on Friday, and for some peace over the coming days.
As soon as you get past Fridays surgery you can start focusing on next steps.
Sending you warm thoughts, and and lots of good wishes in the hopes you can one day soon put this behind you!
Best,
jenny
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- May 24, 2016 at 9:25 pm
Hi Josh-
I continue to follow your story….the decisions we have to make are never easy, and for me at least, always hard to make one and then try not to look back …
It sounds like you have a solid plan, and one you can feel pretty good about.
So for now, I want to wish you well on Friday, and for some peace over the coming days.
As soon as you get past Fridays surgery you can start focusing on next steps.
Sending you warm thoughts, and and lots of good wishes in the hopes you can one day soon put this behind you!
Best,
jenny
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- May 24, 2016 at 9:25 pm
Hi Josh-
I continue to follow your story….the decisions we have to make are never easy, and for me at least, always hard to make one and then try not to look back …
It sounds like you have a solid plan, and one you can feel pretty good about.
So for now, I want to wish you well on Friday, and for some peace over the coming days.
As soon as you get past Fridays surgery you can start focusing on next steps.
Sending you warm thoughts, and and lots of good wishes in the hopes you can one day soon put this behind you!
Best,
jenny
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- May 25, 2016 at 11:11 am
Hey Josh,
So glad that is behind you and the colon was clear! Awesome! Testing done! BOOM!
There are lots of other options…IDO inhibitors, JAK inhibitors, HDAC6 inhibitor, IL 10 with anti-PD1….
I'm putting up abstracts from ASCO daily. Just posted one re factors that make CAVATK work better….one of which is a low tumor burden….which you will have come Friday! So….I'll just keep plowing through it all! Rest up and get ready. You got this! C
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- May 25, 2016 at 11:11 am
Hey Josh,
So glad that is behind you and the colon was clear! Awesome! Testing done! BOOM!
There are lots of other options…IDO inhibitors, JAK inhibitors, HDAC6 inhibitor, IL 10 with anti-PD1….
I'm putting up abstracts from ASCO daily. Just posted one re factors that make CAVATK work better….one of which is a low tumor burden….which you will have come Friday! So….I'll just keep plowing through it all! Rest up and get ready. You got this! C
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- May 25, 2016 at 11:11 am
Hey Josh,
So glad that is behind you and the colon was clear! Awesome! Testing done! BOOM!
There are lots of other options…IDO inhibitors, JAK inhibitors, HDAC6 inhibitor, IL 10 with anti-PD1….
I'm putting up abstracts from ASCO daily. Just posted one re factors that make CAVATK work better….one of which is a low tumor burden….which you will have come Friday! So….I'll just keep plowing through it all! Rest up and get ready. You got this! C
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- May 25, 2016 at 12:08 pm
Josh,
I know from my husband's surgeries that there is much nervousness before the surgery. We wish you the best and it seems like you have a great surgeon and you made a great decision. Get through the surgery and I'm sure Celeste and many others have great ideas for systemic treatments.
Let us know how things go. You are in our prayers and thoughts.
Maureen
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- May 25, 2016 at 12:08 pm
Josh,
I know from my husband's surgeries that there is much nervousness before the surgery. We wish you the best and it seems like you have a great surgeon and you made a great decision. Get through the surgery and I'm sure Celeste and many others have great ideas for systemic treatments.
Let us know how things go. You are in our prayers and thoughts.
Maureen
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- May 25, 2016 at 12:08 pm
Josh,
I know from my husband's surgeries that there is much nervousness before the surgery. We wish you the best and it seems like you have a great surgeon and you made a great decision. Get through the surgery and I'm sure Celeste and many others have great ideas for systemic treatments.
Let us know how things go. You are in our prayers and thoughts.
Maureen
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- May 25, 2016 at 3:12 pm
Thanks Celeste. I've been reading the blog and when you post stuff from ASCO. You're truly a blessing. I'm hoping something comes from ASCO that will help guide my decision. Seems like we need more patients in these studies but exclusion criteria sometimes gets in the way….I kind of get that but don't like it.
Love and Hugs to you!!!!
Josh
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- May 25, 2016 at 3:12 pm
Thanks Celeste. I've been reading the blog and when you post stuff from ASCO. You're truly a blessing. I'm hoping something comes from ASCO that will help guide my decision. Seems like we need more patients in these studies but exclusion criteria sometimes gets in the way….I kind of get that but don't like it.
Love and Hugs to you!!!!
Josh
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- May 25, 2016 at 3:12 pm
Thanks Celeste. I've been reading the blog and when you post stuff from ASCO. You're truly a blessing. I'm hoping something comes from ASCO that will help guide my decision. Seems like we need more patients in these studies but exclusion criteria sometimes gets in the way….I kind of get that but don't like it.
Love and Hugs to you!!!!
Josh
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- May 25, 2016 at 3:12 pm
Thanks Celeste. I've been reading the blog and when you post stuff from ASCO. You're truly a blessing. I'm hoping something comes from ASCO that will help guide my decision. Seems like we need more patients in these studies but exclusion criteria sometimes gets in the way….I kind of get that but don't like it.
Love and Hugs to you!!!!
Josh
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- May 25, 2016 at 3:12 pm
Thanks Celeste. I've been reading the blog and when you post stuff from ASCO. You're truly a blessing. I'm hoping something comes from ASCO that will help guide my decision. Seems like we need more patients in these studies but exclusion criteria sometimes gets in the way….I kind of get that but don't like it.
Love and Hugs to you!!!!
Josh
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- May 25, 2016 at 3:12 pm
Thanks Celeste. I've been reading the blog and when you post stuff from ASCO. You're truly a blessing. I'm hoping something comes from ASCO that will help guide my decision. Seems like we need more patients in these studies but exclusion criteria sometimes gets in the way….I kind of get that but don't like it.
Love and Hugs to you!!!!
Josh
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- May 25, 2016 at 3:19 pm
Thank you all….I'm getting anxious. I just really wanted to say how grateful I am to have my MPIP family. This is a safe place where people understand what comes with this horrible disease. I'm one who gets caught up in stats and being stage 4, I feel sometimes that hope is slipping away. This is a place where I know many of us…you continue to live through the worst diagnosis we could have as a stage 4 melanoma patient…I hold fast to my faith, trust and the inspiration that many of you provide. Yes I'm rattled but I will wrestle through it.
Peace and love to you all!!!
Josh
PS-Sorry for double post on response to Celeste…not sure what the heck happened there. Here's to hoping it doesn't happen with this reply 🙂
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- May 25, 2016 at 3:19 pm
Thank you all….I'm getting anxious. I just really wanted to say how grateful I am to have my MPIP family. This is a safe place where people understand what comes with this horrible disease. I'm one who gets caught up in stats and being stage 4, I feel sometimes that hope is slipping away. This is a place where I know many of us…you continue to live through the worst diagnosis we could have as a stage 4 melanoma patient…I hold fast to my faith, trust and the inspiration that many of you provide. Yes I'm rattled but I will wrestle through it.
Peace and love to you all!!!
Josh
PS-Sorry for double post on response to Celeste…not sure what the heck happened there. Here's to hoping it doesn't happen with this reply 🙂
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- May 25, 2016 at 3:19 pm
Thank you all….I'm getting anxious. I just really wanted to say how grateful I am to have my MPIP family. This is a safe place where people understand what comes with this horrible disease. I'm one who gets caught up in stats and being stage 4, I feel sometimes that hope is slipping away. This is a place where I know many of us…you continue to live through the worst diagnosis we could have as a stage 4 melanoma patient…I hold fast to my faith, trust and the inspiration that many of you provide. Yes I'm rattled but I will wrestle through it.
Peace and love to you all!!!
Josh
PS-Sorry for double post on response to Celeste…not sure what the heck happened there. Here's to hoping it doesn't happen with this reply 🙂
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- May 26, 2016 at 5:14 am
Thinking of you Josh and praying hard for a successful surgery and good recovery(I know that is hard). I really hate all the decisions and I get worn out trying to help Jake make them or him depending on me to know what to do next!! All I know is that I usually feel kind of pulled or led to what's next. You will know. It's scary. One thing is for sure, you are not alone. You have a whole crew right here who really gets it!
Love and prayers,
kerri
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- May 26, 2016 at 5:14 am
Thinking of you Josh and praying hard for a successful surgery and good recovery(I know that is hard). I really hate all the decisions and I get worn out trying to help Jake make them or him depending on me to know what to do next!! All I know is that I usually feel kind of pulled or led to what's next. You will know. It's scary. One thing is for sure, you are not alone. You have a whole crew right here who really gets it!
Love and prayers,
kerri
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- May 26, 2016 at 5:14 am
Thinking of you Josh and praying hard for a successful surgery and good recovery(I know that is hard). I really hate all the decisions and I get worn out trying to help Jake make them or him depending on me to know what to do next!! All I know is that I usually feel kind of pulled or led to what's next. You will know. It's scary. One thing is for sure, you are not alone. You have a whole crew right here who really gets it!
Love and prayers,
kerri
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