Next Step

Is this the one, Paul?

https://www.youtube.com/watch?v=FtQJQhQE3dQ

Is this the one, Paul?

https://www.youtube.com/watch?v=FtQJQhQE3dQ

Is this the one, Paul?

https://www.youtube.com/watch?v=FtQJQhQE3dQ

Is this the one, Paul?

https://www.youtube.com/watch?v=FtQJQhQE3dQ

Is this the one, Paul?

https://www.youtube.com/watch?v=FtQJQhQE3dQ

Is this the one, Paul?

https://www.youtube.com/watch?v=FtQJQhQE3dQ

Hi Paul,

I hear what you are saying re the lower number than hoped for TILs and the lower number of IL2 treatments.  The stats only give us the likely odds- and it may just be that you will fall the other side of the line rather than the one you currently expect.

This gives a list of the early stage trials in the states. https://clinicaltrials.gov/ct2/results?term=melanoma&recr=Open&cntry1=NA%3AUS&age=1&phase=04&pg=2

Not sure if there might be anything that is worth looking in to ?

Have also heard a bit about tumour sequencing in the lab then bench testing other cancer drugs to check for response before deciding on personalised prescribing for an individual- sort of shortening the odds of getting a better hit rate.

Not sure if this is the video link you were looking for… but it is Dr Hamid and goes into some detail but is a bit old now as 2014 https://www.youtube.com/watch?v=UKwuLmhT3Is.. but it might let you surf to something more relevant. to your current position.

Bet you find that the docs are reluctant to have too detailed a conversation about the future- I think it may be because  they deal with a wide range of rates of disease progression and because so many factors come in to play…you might be able to pin them down on what might be a rapid progression window with little response to the TIL treatment  or an average type response…  Wouldn't be suprised if they said we will be able to have a better conversation after the scan..but like you say that is six precious weeks away.

best wishes

Deb

Hi Paul,

I hear what you are saying re the lower number than hoped for TILs and the lower number of IL2 treatments.  The stats only give us the likely odds- and it may just be that you will fall the other side of the line rather than the one you currently expect.

This gives a list of the early stage trials in the states. https://clinicaltrials.gov/ct2/results?term=melanoma&recr=Open&cntry1=NA%3AUS&age=1&phase=04&pg=2

Not sure if there might be anything that is worth looking in to ?

Have also heard a bit about tumour sequencing in the lab then bench testing other cancer drugs to check for response before deciding on personalised prescribing for an individual- sort of shortening the odds of getting a better hit rate.

Not sure if this is the video link you were looking for… but it is Dr Hamid and goes into some detail but is a bit old now as 2014 https://www.youtube.com/watch?v=UKwuLmhT3Is.. but it might let you surf to something more relevant. to your current position.

Bet you find that the docs are reluctant to have too detailed a conversation about the future- I think it may be because  they deal with a wide range of rates of disease progression and because so many factors come in to play…you might be able to pin them down on what might be a rapid progression window with little response to the TIL treatment  or an average type response…  Wouldn't be suprised if they said we will be able to have a better conversation after the scan..but like you say that is six precious weeks away.

best wishes

Deb

Hi Paul,

I hear what you are saying re the lower number than hoped for TILs and the lower number of IL2 treatments.  The stats only give us the likely odds- and it may just be that you will fall the other side of the line rather than the one you currently expect.

This gives a list of the early stage trials in the states. https://clinicaltrials.gov/ct2/results?term=melanoma&recr=Open&cntry1=NA%3AUS&age=1&phase=04&pg=2

Not sure if there might be anything that is worth looking in to ?

Have also heard a bit about tumour sequencing in the lab then bench testing other cancer drugs to check for response before deciding on personalised prescribing for an individual- sort of shortening the odds of getting a better hit rate.

Not sure if this is the video link you were looking for… but it is Dr Hamid and goes into some detail but is a bit old now as 2014 https://www.youtube.com/watch?v=UKwuLmhT3Is.. but it might let you surf to something more relevant. to your current position.

Bet you find that the docs are reluctant to have too detailed a conversation about the future- I think it may be because  they deal with a wide range of rates of disease progression and because so many factors come in to play…you might be able to pin them down on what might be a rapid progression window with little response to the TIL treatment  or an average type response…  Wouldn't be suprised if they said we will be able to have a better conversation after the scan..but like you say that is six precious weeks away.

best wishes

Deb

Hi Paul, here is a link to the Angeles Clinic where dr. Omid Hamid works out of with a list of trials that are going on there.http://www.theangelesclinic.org/Home/ResearchClinicalTrials/ClinicalTrialList/tabid/19278/Default.aspx

There are two companies that have new drugs in the pipeline that might be of some help. Genentech and Incyte. https://www.gene.com/medical-professionals/pipeline and second link http://www.incyte.com/ir/press-releases.aspx look at press releases with incyte home page and what we do drop down box, then click on develop. Best Wishes!!!Ed

Hi Paul, here is a link to the Angeles Clinic where dr. Omid Hamid works out of with a list of trials that are going on there.http://www.theangelesclinic.org/Home/ResearchClinicalTrials/ClinicalTrialList/tabid/19278/Default.aspx

There are two companies that have new drugs in the pipeline that might be of some help. Genentech and Incyte. https://www.gene.com/medical-professionals/pipeline and second link http://www.incyte.com/ir/press-releases.aspx look at press releases with incyte home page and what we do drop down box, then click on develop. Best Wishes!!!Ed

Hi Paul, here is a link to the Angeles Clinic where dr. Omid Hamid works out of with a list of trials that are going on there.http://www.theangelesclinic.org/Home/ResearchClinicalTrials/ClinicalTrialList/tabid/19278/Default.aspx

There are two companies that have new drugs in the pipeline that might be of some help. Genentech and Incyte. https://www.gene.com/medical-professionals/pipeline and second link http://www.incyte.com/ir/press-releases.aspx look at press releases with incyte home page and what we do drop down box, then click on develop. Best Wishes!!!Ed

You need a expert.

You need a expert.

You need a expert.

Hey Paul,

I just want you to know you're in my thoughts and prayers.  Hoping that something will work out asap. 

Terrie

Hey Paul,

I just want you to know you're in my thoughts and prayers.  Hoping that something will work out asap. 

Terrie

Hey Paul,

I just want you to know you're in my thoughts and prayers.  Hoping that something will work out asap. 

Terrie

I am sure Celeste will chime in here with some great thoughts.  I am such a newbie to all of this, I don't have much to offer.  I to was wondering if radiation was an option?  What about chemo?  Or have you done that?  

I feel so heartbroken for those of you that are fighting so hard and reaching dead ends.  I think about Josh and you every day.  Please keep fighting, you never know what is going to work.

xo Jen

I am sure Celeste will chime in here with some great thoughts.  I am such a newbie to all of this, I don't have much to offer.  I to was wondering if radiation was an option?  What about chemo?  Or have you done that?  

I feel so heartbroken for those of you that are fighting so hard and reaching dead ends.  I think about Josh and you every day.  Please keep fighting, you never know what is going to work.

xo Jen

I am sure Celeste will chime in here with some great thoughts.  I am such a newbie to all of this, I don't have much to offer.  I to was wondering if radiation was an option?  What about chemo?  Or have you done that?  

I feel so heartbroken for those of you that are fighting so hard and reaching dead ends.  I think about Josh and you every day.  Please keep fighting, you never know what is going to work.

xo Jen

Hi Paul,

Is there an option to do some low-dose IL-2 for a couple of weeks.  When my husband did TIL it was part of a trial with a high-dose arm and a low–dose arm for the IL-2 part.  Typically high dose has been used with TIL but they are hoping to get good evidence that the low dose is effective and this is much more tolerable.  It was a daily injection done at home for second week.  The IL-2 is supposed to help the T-cells multiply etc as far as I understand it.  Our big challenge was that there were only 4 billion T-cells produced for my husband, very unlucky, but I still think the whole process bought us time and held back further new mets, etc.

Also, T-cells take their time to work, it is a gradual response and if you could get going on something else then it may all contribute together to helping you.  I know you have lots of great advice on possible next steps.  We are going to be needing something new also.

Thinking of you 

Maria

Hi Paul,

Is there an option to do some low-dose IL-2 for a couple of weeks.  When my husband did TIL it was part of a trial with a high-dose arm and a low–dose arm for the IL-2 part.  Typically high dose has been used with TIL but they are hoping to get good evidence that the low dose is effective and this is much more tolerable.  It was a daily injection done at home for second week.  The IL-2 is supposed to help the T-cells multiply etc as far as I understand it.  Our big challenge was that there were only 4 billion T-cells produced for my husband, very unlucky, but I still think the whole process bought us time and held back further new mets, etc.

Also, T-cells take their time to work, it is a gradual response and if you could get going on something else then it may all contribute together to helping you.  I know you have lots of great advice on possible next steps.  We are going to be needing something new also.

Thinking of you 

Maria

Hi Paul,

Is there an option to do some low-dose IL-2 for a couple of weeks.  When my husband did TIL it was part of a trial with a high-dose arm and a low–dose arm for the IL-2 part.  Typically high dose has been used with TIL but they are hoping to get good evidence that the low dose is effective and this is much more tolerable.  It was a daily injection done at home for second week.  The IL-2 is supposed to help the T-cells multiply etc as far as I understand it.  Our big challenge was that there were only 4 billion T-cells produced for my husband, very unlucky, but I still think the whole process bought us time and held back further new mets, etc.

Also, T-cells take their time to work, it is a gradual response and if you could get going on something else then it may all contribute together to helping you.  I know you have lots of great advice on possible next steps.  We are going to be needing something new also.

Thinking of you 

Maria

Hey Paul,

I've been quickly reading up on the CTLA-4 pathway and I know IPI wasn't successful for you so I ran across this from Dr. Hodi at Dana-Farber.  I'm still trying to wrap my brain around all this so take anything I say with a "research grain of salt".  And this has been mentioned several times in the last couple of months which is Avastin as an add-on (there are even studies with Avastin and IL-2 together):  From Dr. Hodi "In 2014 he published a study showing that patients with high blood levels of the protein VEGF tend to have a poor response to ipilimumab. The findings suggest that such patients may benefit from regimens that combine checkpoint inhibitors like ipilimumab with VEGF-blocking agents such as bevacizumab (Avastin®). Hodi’s team has launched a clinical trial of this combination in patients with advanced melanoma."  I'm trying to find out more on bevacizumab as therapy alone since you've done IPI.  But thought maybe in the interim as you are figuring out Plan B.  I wish I had more!  Many hugs.  

I know you aren't a huge fan of clinical speak so I'm pasting one conclusion from one of the studies regarding Avastin:  Conclusion "Bevacizumab monotherapy demonstrated promising clinical efficacy in patients with metastatic melanoma with disease control in 31% of the patients. Induced early hypertension was a marker for clinical efficacy of bevacizumab."  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3376108/

It can maybe be added on??

I'll let others chime in since I'm not sure of any of this is relavant.  

Here was an earlier discussion on the board about it last year:

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/avastin-and-yervoy

Hey Paul,

I've been quickly reading up on the CTLA-4 pathway and I know IPI wasn't successful for you so I ran across this from Dr. Hodi at Dana-Farber.  I'm still trying to wrap my brain around all this so take anything I say with a "research grain of salt".  And this has been mentioned several times in the last couple of months which is Avastin as an add-on (there are even studies with Avastin and IL-2 together):  From Dr. Hodi "In 2014 he published a study showing that patients with high blood levels of the protein VEGF tend to have a poor response to ipilimumab. The findings suggest that such patients may benefit from regimens that combine checkpoint inhibitors like ipilimumab with VEGF-blocking agents such as bevacizumab (Avastin®). Hodi’s team has launched a clinical trial of this combination in patients with advanced melanoma."  I'm trying to find out more on bevacizumab as therapy alone since you've done IPI.  But thought maybe in the interim as you are figuring out Plan B.  I wish I had more!  Many hugs.  

I know you aren't a huge fan of clinical speak so I'm pasting one conclusion from one of the studies regarding Avastin:  Conclusion "Bevacizumab monotherapy demonstrated promising clinical efficacy in patients with metastatic melanoma with disease control in 31% of the patients. Induced early hypertension was a marker for clinical efficacy of bevacizumab."  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3376108/

It can maybe be added on??

I'll let others chime in since I'm not sure of any of this is relavant.  

Here was an earlier discussion on the board about it last year:

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/avastin-and-yervoy

Hey Paul,

I've been quickly reading up on the CTLA-4 pathway and I know IPI wasn't successful for you so I ran across this from Dr. Hodi at Dana-Farber.  I'm still trying to wrap my brain around all this so take anything I say with a "research grain of salt".  And this has been mentioned several times in the last couple of months which is Avastin as an add-on (there are even studies with Avastin and IL-2 together):  From Dr. Hodi "In 2014 he published a study showing that patients with high blood levels of the protein VEGF tend to have a poor response to ipilimumab. The findings suggest that such patients may benefit from regimens that combine checkpoint inhibitors like ipilimumab with VEGF-blocking agents such as bevacizumab (Avastin®). Hodi’s team has launched a clinical trial of this combination in patients with advanced melanoma."  I'm trying to find out more on bevacizumab as therapy alone since you've done IPI.  But thought maybe in the interim as you are figuring out Plan B.  I wish I had more!  Many hugs.  

I know you aren't a huge fan of clinical speak so I'm pasting one conclusion from one of the studies regarding Avastin:  Conclusion "Bevacizumab monotherapy demonstrated promising clinical efficacy in patients with metastatic melanoma with disease control in 31% of the patients. Induced early hypertension was a marker for clinical efficacy of bevacizumab."  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3376108/

It can maybe be added on??

I'll let others chime in since I'm not sure of any of this is relavant.  

Here was an earlier discussion on the board about it last year:

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/avastin-and-yervoy

Hey Paulster!!  

I don't blame you for being very forward thinking.  I pretty much put all my current eggs in the basket of this post (includes a link within to my prior list, as well as one in which Weber talks about future combo's in melanoma, and a report that includes info on VISTA):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/12/more-trial-options-for-those-who-have.html

If I were in your shoes I would certainly be giving the combo of PD-L1, PD-L2 and VISTA antagonists a hard look (it's being offered in San Fran!!!!)  as well as the NCI match trial where they test your tumor for anything and everything it might respond to, like meds typically used to treat breast cancer and such.

Dr Hamid is certainly a melanoma Big Dog with a great reputation.  Additionally, from all reports that I have heard, an incredible human.

Hang in there.  Keep pushing.  Much love, c

Hey Paulster!!  

I don't blame you for being very forward thinking.  I pretty much put all my current eggs in the basket of this post (includes a link within to my prior list, as well as one in which Weber talks about future combo's in melanoma, and a report that includes info on VISTA):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/12/more-trial-options-for-those-who-have.html

If I were in your shoes I would certainly be giving the combo of PD-L1, PD-L2 and VISTA antagonists a hard look (it's being offered in San Fran!!!!)  as well as the NCI match trial where they test your tumor for anything and everything it might respond to, like meds typically used to treat breast cancer and such.

Dr Hamid is certainly a melanoma Big Dog with a great reputation.  Additionally, from all reports that I have heard, an incredible human.

Hang in there.  Keep pushing.  Much love, c

Hey Paulster!!  

I don't blame you for being very forward thinking.  I pretty much put all my current eggs in the basket of this post (includes a link within to my prior list, as well as one in which Weber talks about future combo's in melanoma, and a report that includes info on VISTA):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/12/more-trial-options-for-those-who-have.html

If I were in your shoes I would certainly be giving the combo of PD-L1, PD-L2 and VISTA antagonists a hard look (it's being offered in San Fran!!!!)  as well as the NCI match trial where they test your tumor for anything and everything it might respond to, like meds typically used to treat breast cancer and such.

Dr Hamid is certainly a melanoma Big Dog with a great reputation.  Additionally, from all reports that I have heard, an incredible human.

Hang in there.  Keep pushing.  Much love, c

Dear Paul,

I am from the pray and support team here, don't know anything really about treatments available, but know that you are on our minds, we pray and believe in you getting better!

You are strong and smart and full of life, you will find something great and beat this thing…

Love, 

Patrisa

Dear Paul,

I am from the pray and support team here, don't know anything really about treatments available, but know that you are on our minds, we pray and believe in you getting better!

You are strong and smart and full of life, you will find something great and beat this thing…

Love, 

Patrisa

Dear Paul,

I am from the pray and support team here, don't know anything really about treatments available, but know that you are on our minds, we pray and believe in you getting better!

You are strong and smart and full of life, you will find something great and beat this thing…

Love, 

Patrisa

Paul, first, I'm sorry to hear about the status of your TIL treatment.  My thoughts–when I was at MDA in 2015, I was looking at a trial combining TIL with pembro.  (I never got to the trial because my TIL cells didn't grow (they used a radiated tumor, so we knew the odds were low).)  The theory of the trial is that PD-1 will help unmask the melanoma for the new TIL cells.  Not sure what kind of results they are getting (they had only enrolled 1 patient as of November 2015).  In any case, I wonder if you would benefit from adding PD-1.  I don't think that I would assume that you're pre-and-post TIL immune systems are the "same".  You may get some clinical benefit from PD-1.  It may be too much (for your body) to also add ipi and chemo is probably counterproductive for the new TIL cells.  

Paul, first, I'm sorry to hear about the status of your TIL treatment.  My thoughts–when I was at MDA in 2015, I was looking at a trial combining TIL with pembro.  (I never got to the trial because my TIL cells didn't grow (they used a radiated tumor, so we knew the odds were low).)  The theory of the trial is that PD-1 will help unmask the melanoma for the new TIL cells.  Not sure what kind of results they are getting (they had only enrolled 1 patient as of November 2015).  In any case, I wonder if you would benefit from adding PD-1.  I don't think that I would assume that you're pre-and-post TIL immune systems are the "same".  You may get some clinical benefit from PD-1.  It may be too much (for your body) to also add ipi and chemo is probably counterproductive for the new TIL cells.  

Paul, first, I'm sorry to hear about the status of your TIL treatment.  My thoughts–when I was at MDA in 2015, I was looking at a trial combining TIL with pembro.  (I never got to the trial because my TIL cells didn't grow (they used a radiated tumor, so we knew the odds were low).)  The theory of the trial is that PD-1 will help unmask the melanoma for the new TIL cells.  Not sure what kind of results they are getting (they had only enrolled 1 patient as of November 2015).  In any case, I wonder if you would benefit from adding PD-1.  I don't think that I would assume that you're pre-and-post TIL immune systems are the "same".  You may get some clinical benefit from PD-1.  It may be too much (for your body) to also add ipi and chemo is probably counterproductive for the new TIL cells.