HELP! Mom diagnosed with leptomeningeal disease after one year on Tagrisso.

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samdig1
HELP! Mom diagnosed with leptomeningeal disease after one year on Tagrisso.

My mom has been on her second line treatment, Tagrisso, for over a year. Recently we got a PET/CT scan and a MRI. The PET/CT showed mostly stable disease but two lymph nodes and a bone spot that are showing activity again. The MRI (brain scan) showed 3 suspicious lesions which will be radiated with cyberkife. The problem is, the MRI also showed early signs of leptomeningeal disease (LMD). Obviously this is a very serious situation. Since my mom already had whole brain radiation two years ago, it is not an option. Cyberknife is also not an option for LMD either. Our oncologist is suggesting doubling her dose of Tagrisso from 80mg to 160mg but I am skeptical of this method. She's been on Tagrisso for over a year and up to this point, it has been holding things in the brain at bay. I don't see how doubling it will suddenly make it more effective.

I've read studies and heard of people adding Avastin (bevacizumab) to Tagrisso when LMD shows at progression. This approach makes more sense to me. However, I was hoping to find people on this thread who have been on Tagrisso 80mg then doubled it at the sign of brain progression to 160mg and had success. I know many people have taken 160mg as their starting dose because they had LMD prior to starting Tagrisso, but I am hoping to find people on here who have tried doubling it at the sign of LMD after having success on a normal 80mg. Would also love to hear from people who tried adding Avastin or doing some other therapy that helped them. Thank you!

Jim C Forum Mod...
Jim C Forum Moderator's picture
leptomeningeal disease after one year on Tagrisso

Hi samdig1,

 

I'm sorry to hear of the progression of your mom's disease. The rationale behind raising the dose of Tagrisso is to increase the amount of the drug which crosses the blood-brain barrier to treat the cancer present there. Systemic treatments tend to cross that barrier in varying degrees, but not necessarily in sufficient concentrations to be therapeutic. In the case of LMD, targeted therapies are often pulsed...the standard dose may be increased but administered at longer intervals. For example, Tarceva is often given at four times the standard dose, but every four days. In that way, if  only 25% of the drug crosses the barrier, the full concentration will reach the brain every four days.

 

I hope your mom gets a good response to the higher dose.

 

Jim C Forum Moderator 

 

Jim C Forum Mod...
Jim C Forum Moderator's picture
Treatment options for LMD

Hi samdig1,

 

If you haven't seen it already, this paper discusses the various treatment options for LMD, including pulsed targeted therapies and adding Avastin to such therapies.

 

Jim C Forum Moderator