A Pioneer's Experience

Blazing a Trail

HALLELUJAH!!!!!!!

Experimental intrathecal (monoclonal antibody protocol) treatment has begun!

Last week, I received the first of planned weekly injections into the Ommaya reservoir in my head/brain ventricle. Although we are using a monoclonal antibody that has been found in all studies to be nontoxic, there remains a big risk of infection in the cerebrospinal fluid (causing meningitis) simply from having to puncture the reservoir and risk carrying in a tagalong virus or bacterium.

Doctors don't usually give injections, you know? But because of the need for the sterile field and risk of infection, the doctor gets to do the injection into the reservoir instead of the nurses. So with the able help of two oncology RNs, they established the sterile field and slowly filled the reservoir.

I just lay as still as I could. All I could feel was the sting of the needle in the scalp, then nothing until I could feel the cap of the reservoir become more rigid and push against the scalp as it grew convex from the fluid going in.

What was actually occurring was that CSF was first removed from the reservoir and saved for cytological testing. Then, a saline flush was done of the line, and a mere 5 mg of the monoclonal antibody was slowly injected into the reservoir. This drug will slowly exchange with my CSF over time. We are hoping gravity will get it to the spinal nerve roots in my lower back, at least until we can try getting some of the drug into me via a lumbar puncture.

Like with a lumbar puncture, the medical professionals kept checking to make sure I did not experience any headache or other issues; and had me remain lying down for another 30 minutes after the protocol was done. I really didn't feel anything, just the push against my scalp of the now more rigid, convex reservoir cap.

I was tired, however, which might have been due to a lower blood pressure that day. So once I arrived home, I immediately slept.

The next day, I awoke feeling cruddy, like flu symptoms. I was nauseated, had a headache, and felt a bit achy.

"Is that normal?" my caretaker asked.
"How would we know?" I replied.
"Can't you call and ask the doctor?" my caretaker urged.
"How would HE know?" I replied.
"Don't they have other patients? Hasn't he done this before?" my caretaker persisted.

Uh, NO. I'm the first one they've had for this protocol. Remember? That's why it took so long to arrange.

Yes, this protocol has only been done on a few people in the world and only in very recent times, so I'm on a course that has no well-trodden path to follow. We will all be learning together; hence, I have documented my experience(s) herein.

The next-day headache was familiar; I used to get headaches like this. It definitely was NOT like the headache from the LM; it felt just like a detoxification headache, as did the other symptoms. So I was convinced that the drug had gone to work immediately parking on the cancer cells, so my immune system was BUSY fighting to rid me of these unauthorized invaders. And consequently, I felt like I was fighting a little bug.

Later that night, however, I started to get a bit of a stiff neck. Uh-oh! I need to be vigilantly watching for signs of CSF infection (meningitis). I tracked my temperature that night and early morning; it was fluctuating as low as 95.9 deg (yes, my body was going hypothermic. I didn't like that reading, so I was relieved a few minutes later to see it had returned to above 96 deg).

By the next morning, it was reading a more normal 97.2. Whew! I felt a bit better this second morning, too; although I still had a tad of flu symptoms. So I still believe that the monoclonal antibody has my immune system hard at work on clearing all the cancer cells out of the CSF.

I've had little energy and really have been sofa-bound, but it's clear to me I will survive until the next i.t. injection this week. Each injection gives me more ammunition with which to fight, and I can see clearly how to get to the cure---as long as everything goes JUST RIGHT...

Meanwhile, I've been entertaining myself with my newest hobby: guinea pigs! Wonder why I feel a kinship with them these days?

The Waiting is the Hardest Part

It's Darkest Before the Dawn

It has now been six months (plus) since I was diagnosed with leptomeningeal metastasis (LM), and I'M STILL HERE!!! Furthermore, I've mostly enjoyed a good quality of life. But lately, the hardship of fighting cancer has been harder to take.

My central nervous system (CNS) is threatened by clumps of cancer cells floating in the cerebrospinal fluid (CSF) in my brain and spine. I am at serious risk of having a stroke or suffering serious neurological problems (including death) caused by blockage of the CSF. I already have experienced episodes of losing some control of the lower part of my body, due to metastasis to the spinal nerve roots. So life's been kinda tough right now for me!

One of the hardest parts is this waiting...I KNOW the injection of this drug into the CSF is what I need, and need NOW; but I feel a bit like a high-school student who has spent a lot of time and money getting ready for the prom and is now nervously afraid I'm being stood up!

The neurosurgeon required I wait two weeks after surgery before using the new Ommaya reservoir in my head, which is now UP. So we have spent this time trying to get everything lined up to get the first injection, plus we have still been pressing forward on trying to arrange getting the injection via lumbar puncture. But it is proving to be much harder than we had hoped!

Finally---after working with numerous doctors, nurses, office staff, and my insurance company customer service these past weeks---I have an appointment for TOMORROW to receive the first intrathecal injection via the O-res!!!

I fully believe this treatment is going to prolong my life long enough, and beat back the LM, so that I can travel to Seattle and visit the Tumor Vaccine Group, where I believe I will receive the experimental therapy that will cure me once and for all.

In the meanwhile, I've been remaining as peaceful and unworried as possible, enjoying the stormy weather that surrounds me from the comfort of my sofa, confident I will again spend long days in the sun.

A Picture is Worth a Thousand Words

The Ommaya Reservoir

Gratefully, I am now home recovering from surgery to place the Ommaya reservoir!

The reservoir tube is placed down into the ventricle, where the cerebrospinal fluid is.

Drugs can now be introduced directly into the cerebrospinal fluid by injecting them into the reservoir cap.

Ouch! Still, not bad (comparatively)!

I've had more energy and feel better than I did before the surgery, but I'm not sure it can be attributed to the trepanation!

Still Going!

Briefly

Okay, here is a brief update on a few things:

1. I am scheduled to have surgery to place the Ommaya reservoir in my head on October 6; I am expected to be released straight from ICU on October 7.

2. We are still trying to put together the logistics to do the intrathecal drug via lumbar puncture.

3. Since the hand-foot syndrome is caused by chemotherapy inflaming the small capillaries in the hands and feet, I opted to try using the EB Cellular Cleanse footbath to detox my feet. It's like it reset me; I'm not having the level of HFS/PPE that I was having before the footbath.

4. Oct 15 will be 3 months since my last imaging, so I expect we will be doing some and learning what my current status is.

5. I expect to be able to qualify for the clinical trial through the Tumor Vaccine Group in November, after I have my imaging results and have the intrathecal drug so I can drop one of the toxic chemotherapies.

Life is a little hectic these days as I juggle many duties while preparing for surgery!