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Melanoma Stage 4 with Leptomeningeal Thickening of the spine

This topic has 2 replies, 2 voices, and was last updated 8 years ago by AussieGuy.

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- February 22, 2018 at 4:59 am
- Quote
AussieGuy
Participant

Hi All.

I'm looking for some information for a relative that has been diagnosed with the above. A brief history is as follows:

1. 34 year old female, 3 Years ago diagnosed with Melanoma Stage 1, and had this removed. No further complications or checks done.

2. January 2018 – Had trouble breathing, sent for a scan and diagnosed with Melanoma Stage 4 on her lung.

3. Doctors told her she could start a free trial of Nivolumab if she waited till March.

4. She had back pain for a while, but it was manageable and thought to just be Sciatica. 2 days ago pain became unbearable. MRI returned that she has Leptomeningeal Thickening of the spine.

5. She has been put on dabrafenib and trametinib, but told she cant now go on the free trial of Nivolumab. She is prepared to pay for it but her doctors are saying that the Leptomeningeal Thickening must shrink before she can have Nivolumab. So they hope the dabrafenib and trametinib will accomplish this in 4 weeks.

6. Once shrunk, she will stop taking Trametinib, but stay on the Dabrafenib along with Nivolumab + Ipilimumab

Does this sound correct? Should she start Nivolumab immediately or wait like her doctors have suggested?

Any other treatments, experimental or otherwise anyone would recommend?

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- - February 24, 2018 at 12:06 am
  - Quote
  Bubbles
  Participant
  
  I'm not sure what to tell you, but I didn't want to leave you hanging with no answers….cause that sucks!!! So…LMD is very difficult. You can put that in the search bubble on my blog and see the posts I have made about it. The best I can tell you is this:
  
  1. The docs should do a spinal tap to look for melanoma cells in the cerebral spinal fluid if they suspect leptomeningeal disease.
  
  2. A BRAF/MEK inhibitor combo can work quickly (in brain, body, spinal fluid) for those who are BRAFpositive. So starting your person on that is good.
  
  3. Immunotherapy can have a more durable response. Responses to the BRAF/MEK combo cease at about 6-9 months for most as melanoma tumors learn to work around to treatment. So…adding or starting immunotherapy before the response to BRAF/MEK is diminished makes sense. Delaying the addition of immunotherapy? Not sure about that.
  
  Here's a basic primer to melanoma care that I put together: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
  
  Hope this helps. I wish you and yours my best. Ask more questions as you need. Celeste
  - February 25, 2018 at 11:35 pm
    
    Quote
    AussieGuy
    Participant
    
    Thank you for your reply, ill post again if I have more questions. Cheers

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