A Mixed Bag This Time

Hi, All - 

I went down to St. Louis yesterday with my brother, Dave, for my 6-weekly checkup.  I got the results of last week's CT scan as well.

It was a bit of a mixed bag.  The bad news is that there was some growth in the largest tumor in my lung.  It has grown a millimeter from the last CT scan in July.

My first thought was "Well, a millimeter isn't anything!" and I wondered if they measured it accurately.  Of course, they said it was an accurate measurement as it was done by their computer.  I still have to wonder; If they placed the cursor in the wrong spot, it could be off a millimeter, but who am I to argue?

The good news is that I am still in the clinical trial.  When I signed up for it more than a year ago, I was told any growth or new tumors would cause me to be removed from the study.  I've now found out that they're not quite that harsh about it.  Even though I've had some growth, the tumor itself is still much smaller than it was when I started on the Sutent study and that's what's important.  There are no new tumors and the other tumors are unchanged.

I was taken off the drug a week early in the last cycle because the side effects were so bad.  I was worried that they'd have to take me off the drug because of that, or at least lower the dose. Fortunately, my Hand-Foot Syndrome was only at Stage 3, rather than the Stage 4 they thought at first, so I'm able to continue taking the Sutent at the same level, rather than reducing the dose which is also very good news.

So, all in all, I have to say that the good news outweighs the bad news  (Yea!)

I head down to St. Louis again on October 29, which also happens to be my birthday.  (Is there a better way to celebrate turning 48 than by traveling 500 miles to visit an oncologist?  I can't think of any, either!  )  No CT scans are scheduled until December, which is even better news.  (Not that I don't enjoy getting pumped full of dye and locked in a giant donut.)

There are some interesting developments in treating Hand-Foot Syndrome, which is my most annoying side effect.  There's a new drug called Xyfid that is waiting for FDA approval.  There is a clinical trial using nicotine patches to help treat HF Syndrome in breast cancer patients.  Some people suggest using DMSO to treat it, but I'm a little leery of that.  There's also a lot of chatter on the internet among cancer patients about a concoction of henna, hot water, and lemon.  I have to admit that last one sounds odd but harmless and I might try it.  (My St. Louis oncologist didn't think it would work, but he said he didn't think it would hurt, either, so why not?  And, really, whose feet wouldn't look better with some lovely dye on them?)

Thanks for all your continuing prayers and support.  Hope you're all doing well.

John

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