NSCLC with Leptomeningeal mets

Posted by ina3 @ina3, 6 days ago

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?

@ina3, COVID-19 certainly complicates out of country travel for medical treatment. Major medical centers have had to re-think the delivery of care and more and more we're seeing innovative use of virtual consults. It may be possible for US cancer specialists to confer with your father's cancer team in Turkey. I don't know this for sure, but it is worth calling around to top cancer facilities to find out. Here is the contact information for International Services at Mayo Clinic https://www.mayoclinic.org/departments-centers/international

You may also be interested in this discussion about Whole Brain Radiation Treatment (WBRT), albeit for breast cancer:
– Metastatic Breast Cancer: Whole brain radiation side effects https://connect.mayoclinic.org/discussion/whole-brain-radiation-side-effects/

What options are being offered if your father chooses not to do WBRT?

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Colleen , thank you for the response. They did not offer any other alternative. That is why i wanted to find out the second opinion to see what options do we have.

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@ina3– Welcome back to Mayo Connect. What a tough time for you and your father. It really is scary and frustrating when medicines stop working. I had SBRT- for lung cancer. I have met one person who has had WBRT and he did great for it. I also found this
https://clinicaltrials.gov/ct2/show/NCT04233021
Did your dad have any other treatments before he was on Keytruda?

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@merpreb

@ina3– Welcome back to Mayo Connect. What a tough time for you and your father. It really is scary and frustrating when medicines stop working. I had SBRT- for lung cancer. I have met one person who has had WBRT and he did great for it. I also found this
https://clinicaltrials.gov/ct2/show/NCT04233021
Did your dad have any other treatments before he was on Keytruda?

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no neverr had what you had….. I have Mesothelioma in my left lung and plain old carcinoma in my right lung. I have had chemo that I was allergic to and immune therapy which made my body ache bad and radiation for the carcinoma in my right lung. nothing to be done for my left lung except to drain the fluid off several times. It keeps coming back and so needs to be drained ,more often. that doesn't hurt. sure feels better after draining and I can breathe a little better. Am on oxygen at night. Nancy

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@merpreb

@ina3– Welcome back to Mayo Connect. What a tough time for you and your father. It really is scary and frustrating when medicines stop working. I had SBRT- for lung cancer. I have met one person who has had WBRT and he did great for it. I also found this
https://clinicaltrials.gov/ct2/show/NCT04233021
Did your dad have any other treatments before he was on Keytruda?

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Yes, he did chemo too Carbo, Alimta and Zometa but stopped 6 months ago

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@ina3

Yes, he did chemo too Carbo, Alimta and Zometa but stopped 6 months ago

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@ina3– Hi. I'm checking in to see how things are going. Has your dad decided what he is going to do?

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