Friday, May 20, 2016

beating the blood brain barrier

Ouch! My writing muscle hurts! I realized this week that I have not blogged since March 23. I have so much I want to say that I don't know where to start, so it feels a little overwhelming. 

About 10 days ago, I had an Ommaya Reservoir, installed in my brain. Compared to my other brain surgeries it was a walk in the park but I'm still dealing with all kinds of fallout from the anesthetic, pain and healing. I had my staples out yesterday, though, so the end of the tunnel must be in sight (although my head hurts as I type this).

You can see my incision and the staples here. It's in a semi-circle at the front, slightly to the right.

The good news is that we have decided to try something that is still pretty experimental: injecting Herceptin (also called trastuzumab, to which I have been a super responder. I have been on the drug for 9.5 years and since since going into remission, have no detectable cancer below the neck) directly into my brain, thus getting past the issue of the blood-brain barrierThis is known as Intrathecal (or IT) Herceptin. There is currently a trial happening in Montreal (and a resident who works on it was just in Ottawa, working with my oncologist) and there are stories of people going through the process in the Western US. I will be the first in Ottawa. I'm told that everyone in the hospital is very excited.

By artwork by Patrick J. Lynch, Kuebi = Armin K├╝belbeck - own work, the brain is taken from Image:Skull_and_brain_sagittal.svg made by Patrick L. Lynch. Made with InkScape., Public Domain,

IT trastuzumab was effective in targeting extramedullary (LM) metastases. This resulted in the prolonged survival of our patient for 46 months, compared to a median life expectancy of 3–4 months for breast cancer patients following the diagnosis of LM without treatment []. Given that IV trastuzumab does not cross the blood–brain barrier or blood CSF barrier, IT trastuzumab offers a direct approach to the leptomeninges. (from: "Intrathecal trastuzumab: immunotherapy improves the prognosis of leptomeningeal metastases in HER-2+ breast cancer patient", US National Library of Medicine)

The decision to go this route is the first time I have felt hopeful in a while. My oncologist is nervous about side effects and finding the right dose. I had a very intense reaction to Herceptin when I started and because this kind of treament is still experimental there are potentially some very serious side effects (even death). There is also little clarity as to what dose would be both safe and effective.

Anecdotally, and in trials in Montreal (and elsewhere) the response has been very positive, over all. I'm glad my oncologist has been convinced to give it a go. Additionally, my latest MRI has revealed that the three tumours in the brain lining are all stable, so we are feeling less urgency. This is also good news, although I am keen to get started.

The bubble wrap is called a "Bear Hugger" and it's warm and lovely.
The drugs probably helped with that feeling.


Chris said...

Well, I'm excited for you too. In that special way one can only get excited about a brain catheter. You amaze me as always.

Anonymous said...

All the best Laurie! From a stage IV BC patient in the UK.

Sweet Camden Lass said...

I'm terribly excited by the brain catheter too. It sounds like an utterly awesome trial (I do love trials, and will sign up whenever I can, as I like to be useful).

laurie said...

It's both good and bad that I am not actually in a trial. It gives my doctor more freedom to do what he thinks is right, as opposed to what is prescribed by the trial. It also means there are fewer supports, which is kind of scary.

deb said...

love love love you.

LaVerne said...

I'm so glad you posted, Laurie. I've been wondering about you. I'm glad you took the time to post aboit this very interesting procedure. I hope it works well for you. And I hope your family is well.