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NSCLC with Leptomeningeal mets

Posted by ina3 @ina3, May 20, 2020

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 brain. WBRT.

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. Shall we do WBRT? At least rush to do it when physically he is doing ok for now. Read not encouraging things about WBRT and very confused what to do.

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.

Is there any possibility that I can get a second opinion here is US?

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ina3 | @ina3 | Jun 15, 2020
In reply to @merpreb "@ina3- Good morning. Because we are not medical professionals we can't help with realistic options for..." + (show)
@merpreb

@ina3- Good morning. Because we are not medical professionals we can't help with realistic options for your dad. I can't imagine how tough this is for you. Perhaps the biopsy will show a new direction for his doctors to take. It looks like they are moving ahead with an added chemical. Perhaps this will be the kick that is needed to defeat his cancer. Waiting is so hard. I'm so sorry that so many miles separate the 2 of you and that there are no easy answers. Cancer is hell. I hope that you are taking care of yourself. Does he have any family with him?

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Thanks you. Yes, my mom is there and other two sisters 😄 so that helps a lot. But i want to help from here as much as possible too, Especially I know that i can find more information here.

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Merry, Alumni Mentor | @merpreb | Jun 15, 2020
In reply to @ina3 "Thanks you. Yes, my mom is there and other two sisters 😄 so that helps a..." + (show)
@ina3

Thanks you. Yes, my mom is there and other two sisters 😄 so that helps a lot. But i want to help from here as much as possible too, Especially I know that i can find more information here.

Jump to this post

@ina3
- I know that you want to help. Please make sure that you get the best information from reliable, science-based sources.
https://pubmed.ncbi.nlm.nih.gov/30444051/
https://www.mayoclinic.org/diseases-conditions/lung-cancer/care-at-mayo-clinic/mac-20374633
https://www.massgeneral.org/cancer-center/treatments-and-services/thoracic-cancers/lung-cancer
American cancer society https://www.cancer.org/cancer/lung-cancer.html

I find that when I research I look to see if the word ad begins the site name. This means that they are selling something so skip that. I'm sure that you know this already. At this point waiting for the biopsy is the best. The best help is doing nothing if your information isn't helpful. I think that any kind of supplement at this time might not be the best for him.

ps- I'm so glad that your dad has family with him. This makes all the difference.

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