Monday, September 20, 2010

The Light

Okay, Here's The Plan...

I've been busy busy busy lately, studying every peer-reviewed research report I can to learn how I can best survive leptomeningeal metastasis. Then it took time trying to get to the right doctors to help me. My UCLA/JCCC doctor even got me an appointment with the doctor who discovered how to treat the subtype of cancer I fight(!), the man responsible for providing the ammo I've been using to manage fourth-stage cancer as a chronic condition rather than an immediate killer.

That doctor validated what my oncologists and I think is my best shot at long-term survival. So here's the two-part plan we've all put together to deliver the knockout punch once and for all:

First, we are going to introduce a drug directly ("intrathecally") into my cerebrospinal fluid (CSF). The way that will be accomplished is through lumbar puncture (read: a spinal tap) and also via a type of catheter placed in my head called an Ommaya (oh-my-uh) reservoir.

This two-pronged (literally) introduction method is the best way to get the drug throughout the CSF to find any cancer cells "swimming" in the fluid or lining my central nervous system with a layer of cancer cells like icing ("zuckerguss").

I will have to undergo some (routine!) neurosurgery to place the reservoir before I can receive the drug in my head. I have an appointment at the end of this week with the neurosurgeon at the House Clinic in Los Angeles. Meanwhile, I'm forging ahead with trying to get the lumbar puncture done to get at least that first dose of drug in there.

The second part of our plan is to get me into a tumor vaccine study. I have been in contact with the Tumor Vaccine Group at the University of Washington in Seattle, and am pursuing enrollment in one trial that sounds like the answer I've been waiting---and fighting---to receive. I think the vaccine will solve this little cell replication problem for me once and for all!

This is a throwback to my days playing quarterback -- it's 3rd down and at least 10 to go, nearly game end, and I can see exactly how to reach the goal in two more plays---but it's gonna be hard and everything has to go JUST RIGHT for the whole entire team. I DO NOT WANT to end up in a Hail-Mary-pass situation, because the odds of success for that route are NOT GOOD.

So for me, I not only believe I can see the light at the end of the tunnel; I believe the light is NOT that proverbial train!

Here's looking forward to celebrating more birthdays!

Wednesday, September 8, 2010

Four Full Months

Palmar-Plantar What???

The infusion nurse asked me if I've been hiking lately. Sadly, the answer is "No"! Four full months of toxic chemotherapies have been cumulative, and I now feel poorly most of the time. Furthermore, I'm basically stuck on the sofa, thanks to a little side effect known as palmar-plantar erythrodysesthesia. I know---palmar-plantar WHAT? Let's just call it by its common name, hand-foot syndrome. Although that honestly just doesn't begin to describe it!

I'm blessed in that this side effect is only a Grade 2 in me; Grade 3 is pretty nasty and forget Grade 4 --- you don't want to know. Grades 3 and 4 usually result in the patient having to discontinue the chemotherapy. But even at only Grade 2, walking is difficult.

First off, it feels like someone has beaten my hands and feet with a two-by-four for an hour. Every day. For the past four months. That's what the little descriptions mean about the unpleasant feeling/burning/tingling. Yeah. You know, they leave this stuff out of the brochures for a reason!

Second off, they are on FIRE.

Third, any pressure (like repetitive typing) causes my fingertips to blister.

Fourth, cracks (and I mean PAINFUL cracks) appear as if by magic shortly after I receive the chemotherapy. Cracks and peeling in my heels. Cracks, peeling, and blisters in the pad of the foot. Cracks and peeling in my finger joints. Cracks in my NOSE and EAR even! AARGGH!

So here's what I'm doing for relief:

Nose: Salt-water flush (or neti pot) followed by swabbing the sores with hydrogen peroxide and Aquaph*r ointment.

Ear: Swabbing the cracks with hydrogen peroxide and Aquaph*r ointment.

Hand/finger cracks: Applying Aquaph*r ointment followed by liquid bandage.

Feet blisters/peeling/cracks: Monoi Tiare with iodine followed by Flexit*l Heal Balm and sometimes Aquaph*r ointment

And here's what I've found on how to put that FIRE in the feet out:


1/4 cup water
1/8 cup henna powder
A squirt of lemon juice

Bring the water to a boil, then turn off the heat. Add the henna slowly and stir until it is like cream of tomato soup. You will probably use about 1/8th of a cup. Add a squirt of lemon juice. Let it cool. (If you already have cracks, skip the lemon juice. It will sting.)

Cover a work area with plastic bags or an old towel (henna stains). Paint a thin layer on your bare feet and hands. Use a foam or paint brush to apply it.

It takes up to 15 minutes to dry. You can rinse it off or put socks on and leave it until your next shower.

And believe it or not, that remedy is rooted in peer-reviewed research:

Invest New Drugs. 2008 Apr;26(2):189-92. Epub 2007 Sep 21.

Topical henna for capecitabine induced hand-foot syndrome.

Yucel I, Guzin G.

Department of Medical Oncology, Ondokuz Mayis University Medical School, Samsun 55139, Turkey.


Capecitabine is a chemotherapeutic drug for use in cancers. Hand-foot syndrome (HFS) is side effect of capecitabine which can lead the cessation of the therapy or dose reduction. Henna (Lawsonia inermis) is a traditionally used plant of Middle-East that is applied on hands and feet. Some of cancer patients in capecitabine treatment who developed HFS, we recommended to apply henna. In these patients, six patients were grade 3 HFS and four were grade 2 HFS. Complete response (CR) were seen in four of grade 3 HFS and all of grade 2; two grade 3 HFS improved to grade 1. So far, in the chemotherapy, there was no need of dose reduction and also no side effect of henna seen. Clinical improvement in these patients may relate to anti-inflammatory, antipyretic and analgesic effects of henna. Prospective studies are needed to show this therapeutic effect of henna.

Anyway, I made it four full months before the toxic chemotherapies caught up with me enough to lay me a bit low for a little while. But one way or another, I'm still going!