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?

Interested in more discussions like this? Go to the Lung Cancer Support Group.

Colleen Young, Connect Director | @colleenyoung | May 20, 2020

@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?

ina3 | @ina3 | May 20, 2020

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.

Merry, Alumni Mentor | @merpreb | May 21, 2020

@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?

shortshot80 | @shortshot80 | May 21, 2020

In reply to @merpreb "@ina3- Welcome back to Mayo Connect. What a tough time for you and your father. It..." + (show)

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

ina3 | @ina3 | May 22, 2020

In reply to @merpreb "@ina3- Welcome back to Mayo Connect. What a tough time for you and your father. It..." + (show)

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

Merry, Alumni Mentor | @merpreb | May 26, 2020

In reply to @ina3 "Yes, he did chemo too Carbo, Alimta and Zometa but stopped 6 months ago" + (show)

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

ina3 | @ina3 | Jun 13, 2020

In reply to @merpreb "@ina3- Hi. I'm checking in to see how things are going. Has your dad decided what..." + (show)

Thanks for asking. He finished WBR 2 days ago. He feels still weak and hardly walks due to numbness in his feet. He also did PET to check his lungs and other organs and we are waiting for the doctor to tell us the results and based on that will give us a new treatment i guess? For now he will add Avastin to Keytruda. Do u know if this feet numbness is due to WBR or LMD? Will it get better? From my side i am planning to send Fenben and Milk thistle even though doctors did not approve them but I have been readings lots of good results. I hope I am not making any mistake but I really want to help and do more. 🙏🏼

Merry, Alumni Mentor | @merpreb | Jun 14, 2020

@ina3- Radiation can cause all sorts of side effects. Also, LMD might be numbing part of his spinal cord. I would advise against sending him any herbs because they might interfere with his medications. I know that you really want to help but right now it's best that you let the medical side be handled by his oncologist, even if it's hard for you. I found this
Milk thistle may interfere with the following medications because both milk thistle and these medications are broken down by the same liver enzymes:

Allergy drugs. ...
Drugs for high cholesterol. ...
Anti-anxiety drugs. ...
Antiplatelet and anticoagulant drugs (blood thinners). ...
Some cancer drugs. ...
Drugs are broken down by the liver. (Milk thistle - Penn State Hershey Medical Center - Adam.com)

As for Fenben some countries only provide the drug to animals and not humans.

I know that it's particularly difficult for you not to be able to go to your dad because of COVID-19 right now. Also playing with herbs or other substances, if not peer-reviewed can be quite dangerous. Fenben is a dewormer for animals that has "some potential" for cancer treatment.
(https://www.cancertreatmentsresearch.com/fenbendazole/).

If you can perhaps you should advise your dad to not take these herbs?

Merry, Alumni Mentor | @merpreb | Jun 15, 2020

In reply to @ina3 "Hi everyone, Just wanted to give u an update. My dad finished 10 sessions of WBR..." + (show)

@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?

ina3 | @ina3 | Jun 15, 2020

Hi everyone,

Just wanted to give u an update. My dad finished 10 sessions of WBR this week. He is still feel weak and numb on his feet. Hope it will get better. PET results came and looks like everything else looks good. Tumor in lungs shrunk again. Yee. 🙏🏼 So at this point he will continue Keytruda and add Avastin 900 mg every 6 weeks. They did not add anything else. I worry a little bit, yes, Keytruda Has been doing a great job controlling the lungs tumor progression but it still sneaked up to brain in MLD form, so just adding Avastin would help? What are other options realistically in this case? We are planning to do liquid biopsy soon to see if there are any new mutations. Our doctor also agreed To take Silibinin.