Scan & Update

Hey Josh,

First and foremost, we are happy, and relieved, to have you check-in.  So many here are thinking of you daily and we understand it's hard sometimes to muster up the spirit to post.  Glad the news was not all bad.  The roller-coaster ride can be so difficult.  One moment you are riding high, and the next holding on for dear life and trying not to puke.  You have proven to be strong, and you will be ready for the next ride no matter how steep and sharp the turns.  You are in to win it.

Gary

Hey Josh,

First and foremost, we are happy, and relieved, to have you check-in.  So many here are thinking of you daily and we understand it's hard sometimes to muster up the spirit to post.  Glad the news was not all bad.  The roller-coaster ride can be so difficult.  One moment you are riding high, and the next holding on for dear life and trying not to puke.  You have proven to be strong, and you will be ready for the next ride no matter how steep and sharp the turns.  You are in to win it.

Gary

Hey Josh,

First and foremost, we are happy, and relieved, to have you check-in.  So many here are thinking of you daily and we understand it's hard sometimes to muster up the spirit to post.  Glad the news was not all bad.  The roller-coaster ride can be so difficult.  One moment you are riding high, and the next holding on for dear life and trying not to puke.  You have proven to be strong, and you will be ready for the next ride no matter how steep and sharp the turns.  You are in to win it.

Gary

Dear Josh,

thank you so much for posting, we were all  waiting to hear from you…

I think you had a good response, with only one dose, your LDH dropped from 10 000, right? That to me reads that something good is going on… Also, if the pain diminished, that too is good…

Will be hoping you get TIL, but would not write off keytruda just yet… 

I won't say be brave and patient, this stuff is beyond scary, but trust that one treatment (why not keytruda) will work!!!!  

Hugs and prayers for you and your family!

Love,

Patrisa

Dear Josh,

thank you so much for posting, we were all  waiting to hear from you…

I think you had a good response, with only one dose, your LDH dropped from 10 000, right? That to me reads that something good is going on… Also, if the pain diminished, that too is good…

Will be hoping you get TIL, but would not write off keytruda just yet… 

I won't say be brave and patient, this stuff is beyond scary, but trust that one treatment (why not keytruda) will work!!!!  

Hugs and prayers for you and your family!

Love,

Patrisa

Dear Josh,

thank you so much for posting, we were all  waiting to hear from you…

I think you had a good response, with only one dose, your LDH dropped from 10 000, right? That to me reads that something good is going on… Also, if the pain diminished, that too is good…

Will be hoping you get TIL, but would not write off keytruda just yet… 

I won't say be brave and patient, this stuff is beyond scary, but trust that one treatment (why not keytruda) will work!!!!  

Hugs and prayers for you and your family!

Love,

Patrisa

Hey Josh,

I hear you loud and clear. Was pretty cut up when taken off Pembro v placebo stage 3 trial after delay in treatment whilst they diagnosed and treated infected scar from earlier surgeries on knee relpacement leg.

Thought I was on treatment due to rash and chills,  first week , increasing joint pain, anemia loss of weight and appetite etc. It looked like this could then have screwed treatment with PD1 drug as had previously been given drugs- but unblinding had me on placebo arm – and think Docs were all a bit shocked..

Am now on ipi nivo trial looking at management of side effects by experienced team and feel that trial protocol may be wagging treatment dog…. Liver enzymes were raised Dec 12- so treatment on hold -roughly two weeks at50mg pred and on taper but if don't have treatment Mon 23/1 then off trial again and last Wed liver tests still not back to grade 1. Might get ipi nivo via UK NHS but England is messing with the approvals and saying only for population where drugs were trialled- so brain scan re headaches 21/1 to work out if hypophysitis- but if brain met then guess I need to stay on that trial ….and here I lose my driving licence for two years if a brain met found.  

It feels frustrating enough to be dealing with disease and all the uncertainties that brings without being afraid that what feels like crazy restrictions may exclude me from what the docs think is in my best interests. 

Ok- so liver is main concern- when they do resections they are prepared to leave only 30% to regenerate- so that does buy some time for the TIL or Abraxene Combo to work..  

Lots of anecdotal stuff on things getting to work if patient feels better., so feeling decent last couple of days sounds good.Have a huge internet hug from the UK and will cross fingers and toes that all goes well for you, and everyone else dealing with tough times at the moment.

Best wishes

Deb

Hey Josh,

I hear you loud and clear. Was pretty cut up when taken off Pembro v placebo stage 3 trial after delay in treatment whilst they diagnosed and treated infected scar from earlier surgeries on knee relpacement leg.

Thought I was on treatment due to rash and chills,  first week , increasing joint pain, anemia loss of weight and appetite etc. It looked like this could then have screwed treatment with PD1 drug as had previously been given drugs- but unblinding had me on placebo arm – and think Docs were all a bit shocked..

Am now on ipi nivo trial looking at management of side effects by experienced team and feel that trial protocol may be wagging treatment dog…. Liver enzymes were raised Dec 12- so treatment on hold -roughly two weeks at50mg pred and on taper but if don't have treatment Mon 23/1 then off trial again and last Wed liver tests still not back to grade 1. Might get ipi nivo via UK NHS but England is messing with the approvals and saying only for population where drugs were trialled- so brain scan re headaches 21/1 to work out if hypophysitis- but if brain met then guess I need to stay on that trial ….and here I lose my driving licence for two years if a brain met found.  

It feels frustrating enough to be dealing with disease and all the uncertainties that brings without being afraid that what feels like crazy restrictions may exclude me from what the docs think is in my best interests. 

Ok- so liver is main concern- when they do resections they are prepared to leave only 30% to regenerate- so that does buy some time for the TIL or Abraxene Combo to work..  

Lots of anecdotal stuff on things getting to work if patient feels better., so feeling decent last couple of days sounds good.Have a huge internet hug from the UK and will cross fingers and toes that all goes well for you, and everyone else dealing with tough times at the moment.

Best wishes

Deb

Hey Josh,

I hear you loud and clear. Was pretty cut up when taken off Pembro v placebo stage 3 trial after delay in treatment whilst they diagnosed and treated infected scar from earlier surgeries on knee relpacement leg.

Thought I was on treatment due to rash and chills,  first week , increasing joint pain, anemia loss of weight and appetite etc. It looked like this could then have screwed treatment with PD1 drug as had previously been given drugs- but unblinding had me on placebo arm – and think Docs were all a bit shocked..

Am now on ipi nivo trial looking at management of side effects by experienced team and feel that trial protocol may be wagging treatment dog…. Liver enzymes were raised Dec 12- so treatment on hold -roughly two weeks at50mg pred and on taper but if don't have treatment Mon 23/1 then off trial again and last Wed liver tests still not back to grade 1. Might get ipi nivo via UK NHS but England is messing with the approvals and saying only for population where drugs were trialled- so brain scan re headaches 21/1 to work out if hypophysitis- but if brain met then guess I need to stay on that trial ….and here I lose my driving licence for two years if a brain met found.  

It feels frustrating enough to be dealing with disease and all the uncertainties that brings without being afraid that what feels like crazy restrictions may exclude me from what the docs think is in my best interests. 

Ok- so liver is main concern- when they do resections they are prepared to leave only 30% to regenerate- so that does buy some time for the TIL or Abraxene Combo to work..  

Lots of anecdotal stuff on things getting to work if patient feels better., so feeling decent last couple of days sounds good.Have a huge internet hug from the UK and will cross fingers and toes that all goes well for you, and everyone else dealing with tough times at the moment.

Best wishes

Deb

Hey Joshie,

Have been and will continue to hold you and yours in my heart daily.  Take what positive energy you can from the good parts of your scans and from each of us.  Hang in there.  You are much loved.  I understand every ounce of frustration you have with the current treatment and trial system.  Many of us are working hard to fix it….though I know that is small consolation and our chance of success is less than small.  But…if it matters…you are an inspiration…and there are many of us who will not stop screaming as long as we have breath.  

Just to show you part of what I mean…I wrote this:  (Seriously, you don't have to read the longwinded mess….others may want to…just wanted you to know it was there….)  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/01/the-trial-of-trials.html

You are precious my friend.  Fingers remain crossed for you and yours.  Love, c

Hey Joshie,

Have been and will continue to hold you and yours in my heart daily.  Take what positive energy you can from the good parts of your scans and from each of us.  Hang in there.  You are much loved.  I understand every ounce of frustration you have with the current treatment and trial system.  Many of us are working hard to fix it….though I know that is small consolation and our chance of success is less than small.  But…if it matters…you are an inspiration…and there are many of us who will not stop screaming as long as we have breath.  

Just to show you part of what I mean…I wrote this:  (Seriously, you don't have to read the longwinded mess….others may want to…just wanted you to know it was there….)  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/01/the-trial-of-trials.html

You are precious my friend.  Fingers remain crossed for you and yours.  Love, c

Hey Joshie,

Have been and will continue to hold you and yours in my heart daily.  Take what positive energy you can from the good parts of your scans and from each of us.  Hang in there.  You are much loved.  I understand every ounce of frustration you have with the current treatment and trial system.  Many of us are working hard to fix it….though I know that is small consolation and our chance of success is less than small.  But…if it matters…you are an inspiration…and there are many of us who will not stop screaming as long as we have breath.  

Just to show you part of what I mean…I wrote this:  (Seriously, you don't have to read the longwinded mess….others may want to…just wanted you to know it was there….)  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/01/the-trial-of-trials.html

You are precious my friend.  Fingers remain crossed for you and yours.  Love, c

So happy to see your post up on the board this morning.  It seems like a lot on here are having such miserable complicatons right now.  I was in the ER with my Dad unitl 2 am.  We thought he had a cold, but it started getting worse and worse.  Turns out that he has the Flu, he is so miserable.  Blood shows platelets are even lower than a few days ago, so doesn't look like he will be able to start back on his infusions for a bit, which is disheartening.

Like others have brought out, it does sound like not all is negative in your report.  I can only imagine your frustration with "the system".  I think of your daily and am always holding you close in my thoughts. Hang in there my cyber friend, we are all rooting for you big time!!!!  

xo Jen

So happy to see your post up on the board this morning.  It seems like a lot on here are having such miserable complicatons right now.  I was in the ER with my Dad unitl 2 am.  We thought he had a cold, but it started getting worse and worse.  Turns out that he has the Flu, he is so miserable.  Blood shows platelets are even lower than a few days ago, so doesn't look like he will be able to start back on his infusions for a bit, which is disheartening.

Like others have brought out, it does sound like not all is negative in your report.  I can only imagine your frustration with "the system".  I think of your daily and am always holding you close in my thoughts. Hang in there my cyber friend, we are all rooting for you big time!!!!  

xo Jen

So happy to see your post up on the board this morning.  It seems like a lot on here are having such miserable complicatons right now.  I was in the ER with my Dad unitl 2 am.  We thought he had a cold, but it started getting worse and worse.  Turns out that he has the Flu, he is so miserable.  Blood shows platelets are even lower than a few days ago, so doesn't look like he will be able to start back on his infusions for a bit, which is disheartening.

Like others have brought out, it does sound like not all is negative in your report.  I can only imagine your frustration with "the system".  I think of your daily and am always holding you close in my thoughts. Hang in there my cyber friend, we are all rooting for you big time!!!!  

xo Jen

Damn Josh. What a meat grinder. I know you still have to reach stability with your brain mets, but you are so close to the TIL! 16 more days. There is a high in this roller coaster ride coming your way. You will be looking back at this later my friend. This may just sound like more words, but I believe we are both going to win our respective battles.

– Paul

Damn Josh. What a meat grinder. I know you still have to reach stability with your brain mets, but you are so close to the TIL! 16 more days. There is a high in this roller coaster ride coming your way. You will be looking back at this later my friend. This may just sound like more words, but I believe we are both going to win our respective battles.

– Paul

Damn Josh. What a meat grinder. I know you still have to reach stability with your brain mets, but you are so close to the TIL! 16 more days. There is a high in this roller coaster ride coming your way. You will be looking back at this later my friend. This may just sound like more words, but I believe we are both going to win our respective battles.

– Paul

Josh,

PLEASE read this and respond.  I've mentioned this in a few posts, but don't know if you have talked to someone about it.

I am cheering you on. Don't give up. And get a second opinion on the SBRT.

What about Stereotactic radiation therapy for liver metastases: factors affecting local control and survival Body Radiotherapy (SBRT)

Stereotactic body radiotherapy (SBRT) for liver cancer? Approximately 80 liver tumor patients are treated annually at the University of Michigan using stereotactic body radiotherapy (SBRT), a treatment with the ability to focus a high dose of radiation, delivered with high precision, to a tumor while sparing the healthy tissues nearby. Sometimes called 'radiosurgery' or 'CyberKnife' (a brand of equipment), it is a non-invasive therapy, rather than a type of surgery. The University of Michigan Health System is the premier location in North America for delivering radiation treatments for liver cancer.

—- The above is just a description. I don't know where the BEST  SBRT Liver radiation oncologist is. You need to find that person.

A Single Arm Phase 2 Study of Individualized Proton-Based Stereotactic Body Radiation Therapy (P-SBRT) of Liver Metastases

…The 1-year Local Control was 77%, with a mOS of 18 months (95% CI = 14–21) and mPFS of 4 months (95% CI = 3–8). For colorectal patients 1-yr LC was 60%, with a mOS of 18 mo (95% CI = 13–32).

Stereotactic radiation therapy for liver metastases: factors affecting local control and survival

Median local recurrence-free interval was 23 months with a local control rate of 74.7%, 48.3% and 48.3% after 1, 2 and 3 years. Only minimum biologically effective dose (BED) to gross tumor volume (GTV) remained as independent significant factor for local control in multivariate analysis. No local recurrences were observed in lesions (n = 12) which received a minimal BED to the GTV of 120 Gy. Including 26 local recurrences, 67 patients (91%) showed disease progression after SBRT with a median time of 5 months. Median overall survival was 27 months with survival rates of 77%, 30% and 27% at 1, 3 and 5 years. On multivariate analysis only GTV volume remained as independent significant prognostic factor for overall survival (p = 0.002). No grade 3 to 5 acute toxicity and no grade 4 or 5 late toxicity occurred.

Stereotactic body radiation therapy for liver metastases

The best candidates for SBRT are oligometastatic patients with a good performance status (Eastern Cooperative Oncology Group 0-1 or Karfnosky >70), controlled or absent extra-hepatic disease, number of hepatic lesions ≤3, size lesions ≤3 cm, lesion distance from organs at risk (OARs) >8 mm, good liver function (Childs A) and healthy liver volume >1,000 cc. In patients with 4 liver metastases, diameter ranging from 3 to 6 cm, OARs distance between 5 and 8 mm, moderate liver function (Child B) and healthy liver volume ranging from 700 to 1,000 cc, the use of SBRT must be evaluated with caution. Patients with ≥5 hepatic lesions, diameter greater than 6 cm, OARs distance less than 5 mm, inadequate liver function (Child C) and healthy live< volume <700 cc, are unsuitable for SBRT.

Josh,

PLEASE read this and respond.  I've mentioned this in a few posts, but don't know if you have talked to someone about it.

I am cheering you on. Don't give up. And get a second opinion on the SBRT.

What about Stereotactic radiation therapy for liver metastases: factors affecting local control and survival Body Radiotherapy (SBRT)

Stereotactic body radiotherapy (SBRT) for liver cancer? Approximately 80 liver tumor patients are treated annually at the University of Michigan using stereotactic body radiotherapy (SBRT), a treatment with the ability to focus a high dose of radiation, delivered with high precision, to a tumor while sparing the healthy tissues nearby. Sometimes called 'radiosurgery' or 'CyberKnife' (a brand of equipment), it is a non-invasive therapy, rather than a type of surgery. The University of Michigan Health System is the premier location in North America for delivering radiation treatments for liver cancer.

—- The above is just a description. I don't know where the BEST  SBRT Liver radiation oncologist is. You need to find that person.

A Single Arm Phase 2 Study of Individualized Proton-Based Stereotactic Body Radiation Therapy (P-SBRT) of Liver Metastases

…The 1-year Local Control was 77%, with a mOS of 18 months (95% CI = 14–21) and mPFS of 4 months (95% CI = 3–8). For colorectal patients 1-yr LC was 60%, with a mOS of 18 mo (95% CI = 13–32).

Stereotactic radiation therapy for liver metastases: factors affecting local control and survival

Median local recurrence-free interval was 23 months with a local control rate of 74.7%, 48.3% and 48.3% after 1, 2 and 3 years. Only minimum biologically effective dose (BED) to gross tumor volume (GTV) remained as independent significant factor for local control in multivariate analysis. No local recurrences were observed in lesions (n = 12) which received a minimal BED to the GTV of 120 Gy. Including 26 local recurrences, 67 patients (91%) showed disease progression after SBRT with a median time of 5 months. Median overall survival was 27 months with survival rates of 77%, 30% and 27% at 1, 3 and 5 years. On multivariate analysis only GTV volume remained as independent significant prognostic factor for overall survival (p = 0.002). No grade 3 to 5 acute toxicity and no grade 4 or 5 late toxicity occurred.

Stereotactic body radiation therapy for liver metastases

The best candidates for SBRT are oligometastatic patients with a good performance status (Eastern Cooperative Oncology Group 0-1 or Karfnosky >70), controlled or absent extra-hepatic disease, number of hepatic lesions ≤3, size lesions ≤3 cm, lesion distance from organs at risk (OARs) >8 mm, good liver function (Childs A) and healthy liver volume >1,000 cc. In patients with 4 liver metastases, diameter ranging from 3 to 6 cm, OARs distance between 5 and 8 mm, moderate liver function (Child B) and healthy liver volume ranging from 700 to 1,000 cc, the use of SBRT must be evaluated with caution. Patients with ≥5 hepatic lesions, diameter greater than 6 cm, OARs distance less than 5 mm, inadequate liver function (Child C) and healthy live< volume <700 cc, are unsuitable for SBRT.

Josh,

PLEASE read this and respond.  I've mentioned this in a few posts, but don't know if you have talked to someone about it.

I am cheering you on. Don't give up. And get a second opinion on the SBRT.

What about Stereotactic radiation therapy for liver metastases: factors affecting local control and survival Body Radiotherapy (SBRT)

Stereotactic body radiotherapy (SBRT) for liver cancer? Approximately 80 liver tumor patients are treated annually at the University of Michigan using stereotactic body radiotherapy (SBRT), a treatment with the ability to focus a high dose of radiation, delivered with high precision, to a tumor while sparing the healthy tissues nearby. Sometimes called 'radiosurgery' or 'CyberKnife' (a brand of equipment), it is a non-invasive therapy, rather than a type of surgery. The University of Michigan Health System is the premier location in North America for delivering radiation treatments for liver cancer.

—- The above is just a description. I don't know where the BEST  SBRT Liver radiation oncologist is. You need to find that person.

A Single Arm Phase 2 Study of Individualized Proton-Based Stereotactic Body Radiation Therapy (P-SBRT) of Liver Metastases

…The 1-year Local Control was 77%, with a mOS of 18 months (95% CI = 14–21) and mPFS of 4 months (95% CI = 3–8). For colorectal patients 1-yr LC was 60%, with a mOS of 18 mo (95% CI = 13–32).

Stereotactic radiation therapy for liver metastases: factors affecting local control and survival

Median local recurrence-free interval was 23 months with a local control rate of 74.7%, 48.3% and 48.3% after 1, 2 and 3 years. Only minimum biologically effective dose (BED) to gross tumor volume (GTV) remained as independent significant factor for local control in multivariate analysis. No local recurrences were observed in lesions (n = 12) which received a minimal BED to the GTV of 120 Gy. Including 26 local recurrences, 67 patients (91%) showed disease progression after SBRT with a median time of 5 months. Median overall survival was 27 months with survival rates of 77%, 30% and 27% at 1, 3 and 5 years. On multivariate analysis only GTV volume remained as independent significant prognostic factor for overall survival (p = 0.002). No grade 3 to 5 acute toxicity and no grade 4 or 5 late toxicity occurred.

Stereotactic body radiation therapy for liver metastases

The best candidates for SBRT are oligometastatic patients with a good performance status (Eastern Cooperative Oncology Group 0-1 or Karfnosky >70), controlled or absent extra-hepatic disease, number of hepatic lesions ≤3, size lesions ≤3 cm, lesion distance from organs at risk (OARs) >8 mm, good liver function (Childs A) and healthy liver volume >1,000 cc. In patients with 4 liver metastases, diameter ranging from 3 to 6 cm, OARs distance between 5 and 8 mm, moderate liver function (Child B) and healthy liver volume ranging from 700 to 1,000 cc, the use of SBRT must be evaluated with caution. Patients with ≥5 hepatic lesions, diameter greater than 6 cm, OARs distance less than 5 mm, inadequate liver function (Child C) and healthy live< volume <700 cc, are unsuitable for SBRT.

Josh, thanks for letting us know how things are going.  I can hear the frustration in your words, and I'm so sorry that there always seems to be unhappy news along with the good.  We're all here, being prayer warriors and/or cheerleaders for you.  Just stay positive and do this one day at a time.

Josh, thanks for letting us know how things are going.  I can hear the frustration in your words, and I'm so sorry that there always seems to be unhappy news along with the good.  We're all here, being prayer warriors and/or cheerleaders for you.  Just stay positive and do this one day at a time.

Josh, thanks for letting us know how things are going.  I can hear the frustration in your words, and I'm so sorry that there always seems to be unhappy news along with the good.  We're all here, being prayer warriors and/or cheerleaders for you.  Just stay positive and do this one day at a time.

Josh, am happy to see you back and posting and replying to others. Will keep praying and hoping that the keytruda will work and that you will get the TIL and that readings (i hate these) will come down. Good luck Mark

Josh, am happy to see you back and posting and replying to others. Will keep praying and hoping that the keytruda will work and that you will get the TIL and that readings (i hate these) will come down. Good luck Mark

Josh, am happy to see you back and posting and replying to others. Will keep praying and hoping that the keytruda will work and that you will get the TIL and that readings (i hate these) will come down. Good luck Mark

Cancer is exhausting. Just want you to know my heart is with you. 

Kerri

Cancer is exhausting. Just want you to know my heart is with you. 

Kerri

Cancer is exhausting. Just want you to know my heart is with you. 

Kerri

Hi Josh,

Firstly, that LDH has come down, so something good has happened.

Hope you can read this.  In July, Juan was also at about 50% good liver left.  Numerous mets and some very large ones.  He had Y-90 spheres radioembolization done by Dr Mahvesh at MDA in August and second lobe 6 weeks later in September.

Scans this week showed continued shrinkage in liver with liver enzymes and LDH all in line now.  We were unfortunately focussed on discussing the latest LMD diagnosis, brain and bone progression from MRI's and I have not seen a copy yet of the scan to see extent of liver shrinkage but I had a message that Dr Mahvesh was pleased.  I also heard more melanoma patients are starting to get this liver treatment as it is seems to be working well.  Dr Mahvesh had previously told us it takes a year for the complete effects.

i have no idea if you could do this and still be able to do TIL afterwards with maybe a 3 month delay.  You could keep going with Keytruda through it.  It may position your TIL to have the best chance possible to work. We did all this after TIL and the issue with our TIL was not enough T-cells harvested.

i think what I am saying is if the other disease can be controlled for now and your biggest issue is the liver then this may be a solution to harness in the liver a bit and then get on with the systematic solution,

After being in a dire situation with Juan's liver, the ironic thing is we do seem to have got that sorted but now face an even more difficult situation.

So there is HOPE.  You can get through this.

Thinking of you and your family.

 Maria

Hi Josh,

Firstly, that LDH has come down, so something good has happened.

Hope you can read this.  In July, Juan was also at about 50% good liver left.  Numerous mets and some very large ones.  He had Y-90 spheres radioembolization done by Dr Mahvesh at MDA in August and second lobe 6 weeks later in September.

Scans this week showed continued shrinkage in liver with liver enzymes and LDH all in line now.  We were unfortunately focussed on discussing the latest LMD diagnosis, brain and bone progression from MRI's and I have not seen a copy yet of the scan to see extent of liver shrinkage but I had a message that Dr Mahvesh was pleased.  I also heard more melanoma patients are starting to get this liver treatment as it is seems to be working well.  Dr Mahvesh had previously told us it takes a year for the complete effects.

i have no idea if you could do this and still be able to do TIL afterwards with maybe a 3 month delay.  You could keep going with Keytruda through it.  It may position your TIL to have the best chance possible to work. We did all this after TIL and the issue with our TIL was not enough T-cells harvested.

i think what I am saying is if the other disease can be controlled for now and your biggest issue is the liver then this may be a solution to harness in the liver a bit and then get on with the systematic solution,

After being in a dire situation with Juan's liver, the ironic thing is we do seem to have got that sorted but now face an even more difficult situation.

So there is HOPE.  You can get through this.

Thinking of you and your family.

 Maria

Hi Josh,

Firstly, that LDH has come down, so something good has happened.

Hope you can read this.  In July, Juan was also at about 50% good liver left.  Numerous mets and some very large ones.  He had Y-90 spheres radioembolization done by Dr Mahvesh at MDA in August and second lobe 6 weeks later in September.

Scans this week showed continued shrinkage in liver with liver enzymes and LDH all in line now.  We were unfortunately focussed on discussing the latest LMD diagnosis, brain and bone progression from MRI's and I have not seen a copy yet of the scan to see extent of liver shrinkage but I had a message that Dr Mahvesh was pleased.  I also heard more melanoma patients are starting to get this liver treatment as it is seems to be working well.  Dr Mahvesh had previously told us it takes a year for the complete effects.

i have no idea if you could do this and still be able to do TIL afterwards with maybe a 3 month delay.  You could keep going with Keytruda through it.  It may position your TIL to have the best chance possible to work. We did all this after TIL and the issue with our TIL was not enough T-cells harvested.

i think what I am saying is if the other disease can be controlled for now and your biggest issue is the liver then this may be a solution to harness in the liver a bit and then get on with the systematic solution,

After being in a dire situation with Juan's liver, the ironic thing is we do seem to have got that sorted but now face an even more difficult situation.

So there is HOPE.  You can get through this.

Thinking of you and your family.

 Maria

Hey Josh-

As everyone else has said, I was SOOOO happy to see your post….I had been checking since thursday.

Now I am hoping that all goes well and you can start TIL on the 31st with no other bumps in the road between now and then.

Tough road for sure, and your frustration with the system is understandable……but for now justhoping TIL will happen and is YOUR magic bullet.

Sending good thoughts, and lots of hope!!

best,

jenny

Hey Josh-

As everyone else has said, I was SOOOO happy to see your post….I had been checking since thursday.

Now I am hoping that all goes well and you can start TIL on the 31st with no other bumps in the road between now and then.

Tough road for sure, and your frustration with the system is understandable……but for now justhoping TIL will happen and is YOUR magic bullet.

Sending good thoughts, and lots of hope!!

best,

jenny

Hey Josh-

As everyone else has said, I was SOOOO happy to see your post….I had been checking since thursday.

Now I am hoping that all goes well and you can start TIL on the 31st with no other bumps in the road between now and then.

Tough road for sure, and your frustration with the system is understandable……but for now justhoping TIL will happen and is YOUR magic bullet.

Sending good thoughts, and lots of hope!!

best,

jenny

Josh, it sounds like you have a plan.  Not to jump on the latest post, but consider making an appt with Hamid for a few weeks out as a second option.  You can always cancel the appt.  it is so refreshing to hear of an onc willing to work with advanced patients.  It reminds me of two visits I had in NY last January.  Both were with well known melanoma rock stars.  One left me with a plan and a hopeful feeling (he turned out to be correct, at least for the moment) and the other offered no plan or hope.  Hamid is obviously in the former category.  Keep fighting and planning, and rest when you need to.

Josh, it sounds like you have a plan.  Not to jump on the latest post, but consider making an appt with Hamid for a few weeks out as a second option.  You can always cancel the appt.  it is so refreshing to hear of an onc willing to work with advanced patients.  It reminds me of two visits I had in NY last January.  Both were with well known melanoma rock stars.  One left me with a plan and a hopeful feeling (he turned out to be correct, at least for the moment) and the other offered no plan or hope.  Hamid is obviously in the former category.  Keep fighting and planning, and rest when you need to.

Josh, it sounds like you have a plan.  Not to jump on the latest post, but consider making an appt with Hamid for a few weeks out as a second option.  You can always cancel the appt.  it is so refreshing to hear of an onc willing to work with advanced patients.  It reminds me of two visits I had in NY last January.  Both were with well known melanoma rock stars.  One left me with a plan and a hopeful feeling (he turned out to be correct, at least for the moment) and the other offered no plan or hope.  Hamid is obviously in the former category.  Keep fighting and planning, and rest when you need to.