Leptomeningeal metastases–any hope??? (Desperate!)

I am being treated for leptomeningeal disease by Michael Postow at Sloan Kettering. My metastatic melanoma presented in my breasts (May 2017). I went on Keytruda (immunotherapy) from May until August when MRI showed disease progression to spinal fluid. I am BRAF positive, so was able to go on target therapy combo meds. They were successful in containing the disease, but I couldn’t tolerate the drugs (fevers/rash). I have had radiation and will likely restart meds, but at lower doses. The survival stats you noted are based on pre-immunotherapy treatments. (Melanoma never responded well to chemo.) Best, Carrie 

"Prolonged survival has also been reported for immunotherapy approaches, including intrathecal IL-2, adoptive cell therapies with tumor-infiltrating lymphocytes and cytotoxic T lymphocytes, and immune checkpoint inhibitors, compared with historic medians.[54] A single-center study of 38 patients with melanoma leptomeningeal disease who were treated with intrathecal IL-2 reported a median survival of 9.1 months, and the best-responding 15% of patients reached a median survival of over 24 months.[56] Ongoing survival of over 18 months in a patient with melanoma leptomeningeal disease was reported with WBRT followed by ipilimumab; in this case, treatment with ipilimumab resulted in a complete radiologic response.[57] A phase II trial of combination immunotherapy with ipilimumab and nivolumab in melanoma leptomeningeal disease (ClinicalTrials.gov identifier: NCT02939300) has recently opened to accrual. In summary, early data suggest that both targeted therapy and immunotherapy have efficacy in melanoma leptomeningeal disease and can result in durable responses lasting well over a year. Upcoming trials using newer therapies to address melanoma leptomeningeal disease will likely yield significantly improved survival data over the next decade."

Full article: http://www.cancernetwork.com/melanoma/changing-treatment-paradigms-brain-metastases-melanomapart-2-when-and-how-use-new-systemic-agents

I would also advise you to contact md anderson.  As a patient, I have been under the care of melanoma specialists Diab, Davies, Patel, Tawbi, and Wong. There seems to be one of these on staff 24/7.  I met with Dr Wong Sunday while he was making the rounds and believe this is his specialty

Celeste, Your Feb. Post provides some great "new" information and results of the work they have been doing at MDA, thanks. I'm not sure if I will ever understand why no place else is willing to give it a try. Moving to Houston long term puts that treatment option out of reach for many. It is curious why concurrent use of BRAFi does less well??

Mr. Sarahsmiles1207, I am sorry your wife has received this diagnosis. I hate to hear of anyone with this diagnosis but it pains me more so for a new mother. 

I would recommend reviewing Adriana's story here https://www.melanoma.org/find-support/patient-community/patient-stories/adriana-cooper

as well as my post to Carrie aka doxiemom here https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/spread-spinal-fluid#comment-112201

In short if she is in early stage with few deficits I would try and get in to MDA with Dr. Glitza TOMORROW for a consult if moving to Houston for relatively long term is not off the table with an understanding that daily IT-IL2 is no picnic and that that treatment is far from a guarantee from a cure and that the time you spend there may be no different or even more challenging than if you were to stay home. 

Treatment  early is her best hope for any long term success. The choices are difficult and different for each individual based on the circumstances of their life. 

Please understand that this is only my opinion based on my research during our experience and my communication with other LMD patients and caregivers this past year. I am not a medical professional so please take or leave any of this as you want but it is from my heart.

I am happy to answer any questions or provide any support I can for you here or by email [email protected] or phone

Sincerely, Rob Murphy

Being without my wife and best friend is a challenge every day. I miss you Adriana.

BTW Ed and Celeste since you "apparently are working for big pharma"  could you ask your "bosses" to start some research (and publish) and trials on IT pembro/nivo for LMD. It seems to my uneducated mind that it would have a better chance with less side effects. Do you or any other sciency folks have any thoughts on this. I know it risky with runaway immune system potential.

Thanks, Rob 

Hi, my mom also had LMD at the end, and Rob sent me a lot of information about available treatments.  Unfortunately, she passed about exactly 4-6 weeks after her LMD diagnosis.  If we were in any position to go to Houston for intrathecal IL-2, we would have done so.  However, my mom was rapidly declining at the point of her diagnosis and couldn't walk or urinate properly (this may ahve also been due to the brain mets).  I agree with Rob that you will need to move fast.  LMD is really terrible and I'm so sorry you're in this position. Prayers to you and your family.

Sadly, I fear my "bosses" don't listen to me!!  But…here are my sciency thoughts.  Just thoughts mind you…cause I don't really KNOW!!! Here goes:  I don't think that an IT injection of anti-PD-1 into the CSF would be as effective as you would hope, because it doesn't recruit white cells to the area.  Meaning, anti-PD-1 works by allowing white cells that are already there to be more effective.  Oddly enough IL2 is a cytokine which means that it can attract white cells to the site.  I think a good combo would be to give IL-2 intrathecally while giving anti-PD-1 via IV systemically.  I'm sure that is clear as mud. But, those are my thoughts.  Love you mucho!!  c