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

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3/12/2018 5:57pm
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Replies: 14

Hello everyone. My wife has just been diagnosed with a very aggressive form of melanoma following the birth of our son three months ago. She had no symptoms at all and went to the ER for acute abdominal pain last week. It was the shock of our lives when advanced melanoma was found on her ovary, liver and brain.

Just two days after the diagnosis, we received news of leptomeningeal metastases. From everything I've read this carries a dismal prognosis (and portends only days to weeks to live).

I am an utter wreck. I need some kind of hope--there has to be some kind of new treatment out there that could cure her or at least prolong her life? Does anyone have success in treating this? I can take her anywhere at all for treatment. Thank you so much.

I'm refreshing this page every three seconds. Please, if anyone has any information, I will be eternally grateful. 

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 

Stage IV metastatic melanoma diagnosed May 2017. Treated at Sloan Kettering Cancer Center (New York). Immunotherapy (Keytruda) and targeted therapy (BRAF+) TAF/MEK combo. Leptomeningeal Disease (LMD) — cancer cells in spinal fluid. 

"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...

I'm sorry you all are dealing with this. It's terrible, but there is always hope. Please go to the search option for this forum and type in Bubbles Primer. A wonderful woman named Celeste has put this together and it should give you some useful information. She also has her own blog where you can search for more information if it is not covered in the primer. There is hope!!

Sorry to see that you and your wife are going through this.  Don’t panic,  I have this as well as lung mets, and was diagnosed 18 months ago.  I held stable on Taf/Mek (not sure if your wife is BRAF positive) and actually had an over 25% reduction on Keytruda and a little radiation on one lung met.  I can’t have gamma knife radiation as it’s not in a safe location.

my advice would be to make sure you’re consulting with an experienced melanoma specialist, who is not going to give up. Others here will have more and better info, but I wanted to make sure you knew some of us have outlived the dire predictions!




Sorry you are dealing with this.  Where is your wife being treated?  To me the most important thing at this point would be to get in front of the best of the best melanoma oncologists.  Where you are located may help us give recommendations but certainly Sloan Kettering in NY and MD Anderson in Houston are two that come to mind, though there are others.  Is she on any treatment currently?  Do you know if her tumors have been tested for mutations?  

There are others that are more knowledgeable that will chime in but if you have more information it would be helpful.

Don't give up hope with this ever.  There's lots of us that have survived tumors just about everywhere.  Keep in mind that what you are reading is outdated.  Though I do think getting good care and quickly is very important 

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

My heart goes out to you ... But as others have noted above, there is hope. Where are you located so that group members can advise on the nearest melanoma institutes in your area? ~ Carol

Hey sweetie, 

Sorry for your desperation.  I understand.  Melanoma doesn't play and leptomeningeal disease is very serious.  Others have given you important info.

1.  There is hope.

2. Get to a melanoma specialist ASAP.

3.  You need to know your wife's BRAF status.  A dear one of mine found some respite by taking BRAF inhibitors combined with MEK inhibitors.  However, this is only effective if the melanoma tumor is BRAF positive. You can review posts by "adriana cooper" on this forum if you are interested in that.

4.  Intrathecal infusions (where medicine is injected directly into the spinal fluid like when you have an epidural for delivering a baby...sort of) can be a way of getting needed treatement to the source in leptomeningeal disease.  Here is a recent report on that:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/02/leptomeningeal-disease-in-melanoma-bit.html  

5.  I know this is a lot all of a sudden.  Ask more questions as you have the need.

6.  Rob, Adriana's husband still checks in periodically...so he may be able to provide additional information

Hang in there.  I wish you my best.  Celeste

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/...

as well as my post to Carrie aka doxiemom here https://www.melanoma.org/find-support/patient-community/mpip-melanoma-pa...

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 harborhits@gmail.com 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

I do not come onto the forum much these days but my heart turned over when I read this post.  I am so sorry you are going through this.

my husband, Juan, was also diagnosed with LMD in his final months.  He had already been through so much and was not in a position to do the treatment offered at MDA but I agree with Rob, you need to get in to see Dr Glitza at MDA as soon as possible.  If there are no symptoms of the LMD yet (brain/spine impairment) then the potential for the treatment to work is much higher as I understand it.  A year ago, MDA was the only place offering treatment I believe and Dr Glitza was running the programme.  Hope you can get a plan together very quickly.