Advice Needed for Adriana Cooper

Patina, Thanks for you post here and the links you have provided. Thanks for all you have contributed to this site which we have been following for several years. Thanks to all of the others that are so knowledgeable and share that information here. I have read many of the past posts here on LMD and would be grateful to hear from any current or past caregivers or patients concerning the IL-2 treatment at MDA or elsewhere (if available) and especially anyone that has received any of the chemo treatments (successful or not) as it seems that what is going to be offered to Adriana. I have read here and general Google searches posts from joy, sstamps, Hanna Copeland, Leslie E Little, others.
In the reading I've done it seems the only reasonably successful treatment is the intrathecal IL-2 provided at MDA and I have found no success of any duration for intrathecal chemo drugs when it comes to melanoma. Is this a correct assessment?  If thinking about this logically it seems to make sense, given that it is known, as I understand, that melanoma solid tumors (as opposed to other cancers) tend to not respond to chemo (other than targeted therapies) yet seem to be responding to immunotherapies. If the intrathecal IL-2 is so much more successful, understanding that nothing is a cure or guarantee, why then is it only offered at MDA by one Dr. (or is this not the case?) Seattle, as well as other cities around the country have rather progressive cancer research centers, why wouldn't they offer it? Although we plan on investigating the possibility of treatment at MDA  treatment there at this time seems unlikely. In my reading I find that in addition to managing the LMD it is important to separately manage the systemic disease (which ultimately is the battle that most  people seem to loose even though the LMD is under control.) If managing the LMD with a chemotherapy, wouldn't managing the other part with an immunotherapy such as Keytruda be incompatible (ie chemo=kill immune system vs Keytruda=activate-increase immune system. Would this then limit her to BRAFi (which she has already used ad worked except allowed the brain tumor last year?)

Although Adriana  can still get around I can see  decline this past 2 weeks, needing to use a cane again and frequency of pain and a huge effect on her spirit which is breaking my heart. Honestly, I find myself focusing on completing some of her bucket list items now while she can enjoy them (going to see Dolly Parton tomorrow, although she has admitted she finds she is not as excited at she thought.) Given the grim prognosis I find myself distraught at the thought of the loss of the love of my life. 

Grateful for any words- good or bad. 

Rob

Patina, Thanks for you post here and the links you have provided. Thanks for all you have contributed to this site which we have been following for several years. Thanks to all of the others that are so knowledgeable and share that information here. I have read many of the past posts here on LMD and would be grateful to hear from any current or past caregivers or patients concerning the IL-2 treatment at MDA or elsewhere (if available) and especially anyone that has received any of the chemo treatments (successful or not) as it seems that what is going to be offered to Adriana. I have read here and general Google searches posts from joy, sstamps, Hanna Copeland, Leslie E Little, others.
In the reading I've done it seems the only reasonably successful treatment is the intrathecal IL-2 provided at MDA and I have found no success of any duration for intrathecal chemo drugs when it comes to melanoma. Is this a correct assessment?  If thinking about this logically it seems to make sense, given that it is known, as I understand, that melanoma solid tumors (as opposed to other cancers) tend to not respond to chemo (other than targeted therapies) yet seem to be responding to immunotherapies. If the intrathecal IL-2 is so much more successful, understanding that nothing is a cure or guarantee, why then is it only offered at MDA by one Dr. (or is this not the case?) Seattle, as well as other cities around the country have rather progressive cancer research centers, why wouldn't they offer it? Although we plan on investigating the possibility of treatment at MDA  treatment there at this time seems unlikely. In my reading I find that in addition to managing the LMD it is important to separately manage the systemic disease (which ultimately is the battle that most  people seem to loose even though the LMD is under control.) If managing the LMD with a chemotherapy, wouldn't managing the other part with an immunotherapy such as Keytruda be incompatible (ie chemo=kill immune system vs Keytruda=activate-increase immune system. Would this then limit her to BRAFi (which she has already used ad worked except allowed the brain tumor last year?)

Although Adriana  can still get around I can see  decline this past 2 weeks, needing to use a cane again and frequency of pain and a huge effect on her spirit which is breaking my heart. Honestly, I find myself focusing on completing some of her bucket list items now while she can enjoy them (going to see Dolly Parton tomorrow, although she has admitted she finds she is not as excited at she thought.) Given the grim prognosis I find myself distraught at the thought of the loss of the love of my life. 

Grateful for any words- good or bad. 

Rob

Patina, Thanks for you post here and the links you have provided. Thanks for all you have contributed to this site which we have been following for several years. Thanks to all of the others that are so knowledgeable and share that information here. I have read many of the past posts here on LMD and would be grateful to hear from any current or past caregivers or patients concerning the IL-2 treatment at MDA or elsewhere (if available) and especially anyone that has received any of the chemo treatments (successful or not) as it seems that what is going to be offered to Adriana. I have read here and general Google searches posts from joy, sstamps, Hanna Copeland, Leslie E Little, others.
In the reading I've done it seems the only reasonably successful treatment is the intrathecal IL-2 provided at MDA and I have found no success of any duration for intrathecal chemo drugs when it comes to melanoma. Is this a correct assessment?  If thinking about this logically it seems to make sense, given that it is known, as I understand, that melanoma solid tumors (as opposed to other cancers) tend to not respond to chemo (other than targeted therapies) yet seem to be responding to immunotherapies. If the intrathecal IL-2 is so much more successful, understanding that nothing is a cure or guarantee, why then is it only offered at MDA by one Dr. (or is this not the case?) Seattle, as well as other cities around the country have rather progressive cancer research centers, why wouldn't they offer it? Although we plan on investigating the possibility of treatment at MDA  treatment there at this time seems unlikely. In my reading I find that in addition to managing the LMD it is important to separately manage the systemic disease (which ultimately is the battle that most  people seem to loose even though the LMD is under control.) If managing the LMD with a chemotherapy, wouldn't managing the other part with an immunotherapy such as Keytruda be incompatible (ie chemo=kill immune system vs Keytruda=activate-increase immune system. Would this then limit her to BRAFi (which she has already used ad worked except allowed the brain tumor last year?)

Although Adriana  can still get around I can see  decline this past 2 weeks, needing to use a cane again and frequency of pain and a huge effect on her spirit which is breaking my heart. Honestly, I find myself focusing on completing some of her bucket list items now while she can enjoy them (going to see Dolly Parton tomorrow, although she has admitted she finds she is not as excited at she thought.) Given the grim prognosis I find myself distraught at the thought of the loss of the love of my life. 

Grateful for any words- good or bad. 

Rob

I am sorry for what you and Adriana are going through. Sadly, as you're more than well aware there are few optons for folks with leptomeningeal disease and what little there is has limited geographic distribution. I recently posted this link with some info about IT IL-2:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/intrathecal-il2-for-melanoma-patients.html

There is also this case study from a bit ago:

 http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/leptomeningeal-disease-case-study.html

I wish there were more and better options. Celeste

I am sorry for what you and Adriana are going through. Sadly, as you're more than well aware there are few optons for folks with leptomeningeal disease and what little there is has limited geographic distribution. I recently posted this link with some info about IT IL-2:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/intrathecal-il2-for-melanoma-patients.html

There is also this case study from a bit ago:

 http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/leptomeningeal-disease-case-study.html

I wish there were more and better options. Celeste

I am sorry for what you and Adriana are going through. Sadly, as you're more than well aware there are few optons for folks with leptomeningeal disease and what little there is has limited geographic distribution. I recently posted this link with some info about IT IL-2:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/intrathecal-il2-for-melanoma-patients.html

There is also this case study from a bit ago:

 http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/leptomeningeal-disease-case-study.html

I wish there were more and better options. Celeste

In 2016 MRF sponsored a paper I mentioned on a different message the other day, "Melanoma Central Nervous System Metastases: Current Approaches, Challenges, and Opportunities." It has a section on leptomeningeal disease (LMD). While including discouraging historical stats, it mentions a new recent trial for LMD patients, with the LMD arm getting intrathecal T-Cells / TIL + intrathecal IL-2. The trial info is at: https://clinicaltrials.gov/ct2/show/NCT00338377. The location is at MDA.

The MRF paper is here, with a link to read the full article: http://onlinelibrary.wiley.com/doi/10.1111/pcmr.12538/abstract

In 2016 MRF sponsored a paper I mentioned on a different message the other day, "Melanoma Central Nervous System Metastases: Current Approaches, Challenges, and Opportunities." It has a section on leptomeningeal disease (LMD). While including discouraging historical stats, it mentions a new recent trial for LMD patients, with the LMD arm getting intrathecal T-Cells / TIL + intrathecal IL-2. The trial info is at: https://clinicaltrials.gov/ct2/show/NCT00338377. The location is at MDA.

The MRF paper is here, with a link to read the full article: http://onlinelibrary.wiley.com/doi/10.1111/pcmr.12538/abstract

In 2016 MRF sponsored a paper I mentioned on a different message the other day, "Melanoma Central Nervous System Metastases: Current Approaches, Challenges, and Opportunities." It has a section on leptomeningeal disease (LMD). While including discouraging historical stats, it mentions a new recent trial for LMD patients, with the LMD arm getting intrathecal T-Cells / TIL + intrathecal IL-2. The trial info is at: https://clinicaltrials.gov/ct2/show/NCT00338377. The location is at MDA.

The MRF paper is here, with a link to read the full article: http://onlinelibrary.wiley.com/doi/10.1111/pcmr.12538/abstract