A question regarding Tagrisso - 1289633

Hi Arial,

Welcome to Grace. I'm so sorry to know of your diagnosis and need for almost constant treatment. Here are a few thoughts to get you started.

Tagrisso may not be as difficult to take and you won't know until you try.

Cancer cells are found in the spinal meninges known as leptomeningial carcinomatosis. Unfortunately it's not been shown to be very treatable. One of the most effective treatments has been found in the few with EGFR mutation so you seem to be one of those who have benefited. The treatment in the case of lepto in those egfr+ is called "pulsed" where the dose taken is high but less often (such as a normal 4 days of doses taken at once but just once ever 4 days).

There isn't as much known about taking pulsed tagrisso for lepto because lepto is fairly rare and tagrisso is new. However nsclc specialists are making the easy transition to tagrisso for those who have lepto and are t790m +.

The main question you're asking is whether you should start now or can you wait. I think most oncologists would be hesitant to wait given the chance. However if you need a break and are not having symptoms and if you are watched very closely and are ready with pills at hand a break is reasonable.

MRI shows collections of lepto at a fairly early stage but these scans are done after symptoms show up. Another conversation with your onc about having tagrisso on hand and waiting until symptoms begin to show up would be reasonable, especially if that is what you want. Your wants/needs are the most important while your oncs needs/wants are for you to get what you need when you need it. I think the beauty of working as a team is so that these very discussions can be had in the planning process.

I hope this helps a little.

All the very best,
Janine

Hi Kim,

I'm so sorry to know of Ariel's progression. There's not any good evidence that cancer in the form of lepto can be cured. Waiting to see is essentially waiting for it to return. The problem with waiting as you saw before is that symptoms can show up quickly but can't always to tamped down. I imagine radiation in that area would be difficult or impossible to do safely a 2nd time. There's no where that says he can't start tagrisso then stop if side effects are too toxic. His oncologist is rightly worried that he may miss his opportunity to benefit from tagrisso but it's ultimately up to Ariel. I wish I could give you a more direct answer.

I hope Ariel does well.
All best,
Janine

Hi Kim,

Those symptoms certainly sound like the typical effects of steroid withdrawal, but Ariel's doctors would best be able to determine the cause, since they have full information on all of his symptoms, blood tests and clinical examinations. Each patient has a different rate of steroid taper that works well for him, so even a gradual taper may not have been slow enough for him. Perhaps you can ask his doctors whether they feel this may be an issue.

I hope he's feeling better soon.

JimC
Forum moderator