Leptomeningeal mets

[Ina3]

Hi everyone. Wanted to find out any success stories on stage IV with Leptomeningeal mets.

My dad who was doing very good , being on Keytruda for 18 months , last PET in January showed no brain mets, shrinking tumor in Lungs, they even decided to do scans every 6 months instead of 3 but last week he did MRI and we were told that he has LEPTO.. and we were told that he needs to do a radiation on the entire head.

I was soo happy when he was doing so good and don’t understand if 6 months ago there was nothing , how come that quickly it spreaded again?

Any advice is appreciated. My dad is in country Georgia, i am trying to help him from US as much as I can but with Covid situation its even harder. He usually does his treatments in Istanbul, Turkey but now don’t even know what is he gonna do.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Ina3,

I am very sorry to hear that your dad has leptomeningeal mets, this must be a very difficult time for you, made even worse with the current covid-19 pandemic. All over the world different hospitals and clinics are having to adjust treatment regimes and amend what therapies are offered to patients. For accurate information on Radiotherapy availability in Istanbul it would be best to directly contact the center where your dad is due to have his treatment, they can then advise on the best course of action.

Kind regards

The Roy Castle Support Team

[Ina3 in reply to RoyCastleHelpline]

Thank you for your response. I want to find out if we should pursue with WBRT or not? I don’t read encouraging things about WBRT and wondering if we don't need to rush it? My dad is doing ok now physically, he complains about numbness in the feet and sometimes balancing problem but but what is after WBRT it will deteriorate? I read many people avoid doing it and find other options. Are there other options at this time? 🙏🏼

[juliepoolie01]

Hiya, my Mum was diagnosed with Stage 4 lung cancer with lepto 3.5 years ago, she did really well for a long time but the lepto spread and grew after 2.5 years. She had gamma knife radiation to the areas of lepto just over a year ago and has remained stable since. mild symptoms but still living independently. Lepto can be very difficult to see even on MRI and in my experience it could have already been there and not obvious or has spread to the lining since. Gamma Knife is far less intrusive and from what i understand more effective however it does depend on size and area of spread. i also dont know if Gamma Knife is an option where your Dad is.

It is a really difficult and stressful time and although prognosis isnt great there are people who manage fairly well for some years with this complication.

I wish your Dad and you all the best and sending lots of love xxxx

[juliepoolie01]

I also understand WBR radiation is a last option with Lepto, we are in the UK and would only be suggested if no other options are available, Mum was still well when Gamma Knife was suggested but in the UK there are only 2 NHS hospitals that offer the treatment and is not wide spread. Decisions to use are based on size, how many legions, life expectancy to be beyond 6 months, good health etc... Mum has done remarkably well with treatment and has stayed active and well throughout, her legions from lepto were small enough to treat with Gamma Knife and the decision was made based on the above.

It is a very difficult decision as lepto can spread pretty quickly in many incidences, hence the choice to put him forward. As we have the NHS here the treatment is pretty much decided by Oncologist, of course treatment can be refused however we don't get to choose as i am aware some systems allow. i don't know if your Dads treatment is based on insurance with options or restrictions but i would certainly ask about Gamma Knife as its precision, high level radiation with very few or no side affects.

I hope this helps xx

[Ina3 in reply to juliepoolie01]

Thank you Julie very much.

Did your mom took any other medications?

[juliepoolie01 in reply to Ina3]

Yes, she has remained on Keytruda throughout as she has excellent disease control everywhere else x