Funniest Bit of the Campaign Season

Formula for the Henna Treatment for Hand-Foot Syndrome

I haven't tried this yet, but I plan to when I start my next cycle of Sutent.  It sounds interesting and I'll post my results.

Mix it with hot water and squeeze in a splash of fresh lemon juice. Let it cool.

Collect your supplies – a large garbage bag, a few plastic grocery bags, or old towels; a small non-metal bowl and non-metal spoon; a lemon.

Put half a cup (120 ml) of very hot water, even boiling, in a non-metal bowl. Add fresh lemon juice, a half teaspoon or so. Using a non-metal spoon, add the powder a little at a time. You’ll probably be using about a quarter of a cup (60 g) to a half cup (120 g). Stir. Thicken until it is about the thickness of toothpaste, pudding or frosting – no drippiness. Let it sit until it COOLS. Some people say overnight, I only wait until it cools.

You don't have to be exact with the amounts. I like it thick so it doesn't drip, but it takes longer to dry.

Apply the henna
I pick a place where I want to sit for an hour and cover an ottoman with the large garbage bag.
Apply to the skin with a non-metal tool like the back of a plastic spoon, a paintbrush or a long-handled wooden spoon. (It’s easier for someone else to do it for you.) Apply until the area is thickly covered, like frosting a cake or plastering a wall. Leave on for 5 - 6 hours. It’s messy. I let it dry, then I use the plastic grocery bags on my feet to walk around (carefully). Some people bandage the hennaed area, which I have not tried.

To get the six hours, I put an old towel on the bed and leave my foot out from the covers for the night. You will get crumbs of dried henna on the bed but if it’s dry when you go to bed, it won’t stain. I wasn’t harmed by leaving it on if I slept longer than six hours. The dog did not lick it off.

Xyfid approval moving along

Henna as a treatment for Hand-Foot Syndrome?

Off of Sutent Early This Cycle

I forgot to post that I was taken off Sutent on August 27.  This is a week early for that cycle.  The side effects, especially the Hand-Foot Syndrome, were just killing me.  The Hand-Foot got to stage 3.  

I hope it will be easier the next cycle which starts on September 17.

I'm looking for various things that may help and I'll post what I find on this blog.

DMSO is also suggested as a treatment, but I'm concerned about how to find a safe supply.  I'm not comfortable with the idea of using an industrial lubricant on my feet without some sort of medical oversite.

Xyfid is still moving along in the approval process.  I hope it is OKed soon!

Good News!

Hi, All - I went down to St. Louis Wednesday for my 6-weekly check up.
I got the results of my latest CT scan then and got some good news: The
largest tumor is my lung has shrunk 24% since first starting on the drug
Sutent in April, 2007!

Needless to say, I'm very excited and grateful to hear this. It makes
putting up with the side effects so much easier when you get news like
that.

The tumor is still considered to be pingpong ball sized, but now it more
like a crushed pingpong ball rather than a nice round one. (This is my
St. Louis oncologist's description, not mine.)

The several smaller tumors scattered around my body remain, but there is
no growth in them and no new tumors and that is still the main point of
this clinical trail.

A summary of findings was presented earlier this summer. The results of
the study have been positive and they are investigating whether to
expand it. If it is expanded there is some hope that my oncologist in
Lincoln may be certified for it or, if not him, then maybe a cancer
program in Omaha. (Although I would miss seeing Sara's aunt and her
cousins on my trips to St. Louis.)

The most unpleasant side effect for me remains the Hand-Foot Syndrome . There is
some research going on in that area, but none of it is with my particular drug. However, more and more of the new cancer drugs are causing this particular reaction so there is hope that there will be more research on it (THE SOONER THE BETTER).

Thanks again for all your prayers and support.

John

Clinical Trial Update from May 14, 2008

Hi, All - I went down to St. Louis yesterday for my 6-weekly visit. No CT scans this time; I'll have a scan the second week of June.

I just passed my first anniversary on Sutent and doctors with the clinical trial are pleased thus far. In the past year, I've had no new tumors and no growth in the existing tumors. There has even been some shrinkage in some of them, forwhich I am very grateful. They're a bit concerned that some of the medical side effects (like anemia, immune system suppression, Hand-Foot Syndrome) seem to be getting more pronounced, but not to the point that they think they need to suspend treatment or reduce the dose. Personally, I'd be happy if I could taste things again, but that's a small thing. (There's an interesting blog entry from by kidney cancer patient on what he calls "Sutent Mouth" that pretty much matches my experience.)

The study leaders still plan to present a paper on the study this summer. Hopefully, that will lead to an expansion of the study and maybe I can participate in it from Lincoln, rather than going to St. Louis every 6 weeks. (Although I'd miss seeing Sara's aunt and cousins if I didn't do that!) They took a picture of my eyelashes this time to show to other doctors: The ends are white (like most of the rest of my hair) but the roots have turned dark in the 2 weeks I was off the drug. It makes for a rather odd look. (I just hope I get model credit if the picture is published!)

My next trip to St. Louis is June 25 when I'll get my latest CT scan results.

Thanks for all your prayers and support for me and my family. My Lincoln oncologist recently had a stroke. He's expected to make a full recovery but I'd appreciate it if you could include him in your prayers as well.

John