Thursday, September 18, 2008

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.



J said...

Keep up the humor, John - it really does help!

Shin said...

Hey John,

I like your attitude and sense of humor!

I'm glad your Hand-Foot Syndrome hasn't reached Stage 4. Stage 4 is nasty and you definitely don't want to go there.

I encourage you to try the henna remedy before you get to Stage 4.

I was somewhere between Stage 2 and 3 (red, raw, tender feet, some peeling of skin, little paper cut-like slashes at the joints of hands, painful when walking) when I used the henna paste. The next day, I was able to walk around without any pain.

Then I started on the new chemo, Ixempra. A few days after that, my feet started to feel tender again so I used the henna paste again. The next day, the tenderness was gone. Now I use it whenever I start to feel the slightest bit of tenderness, hoping that it will prevent my feet from getting to anything worse than Stage 2.

Lately, I haven't had to use the paste at all. I even went ice-skating yesterday with my daughter. It seems the henna paste not only eases the pain of HFS; it actually prevents HFS.

I'm a bit of a skeptic when it comes to odd, alternative treatments, but I won't argue with something that actually works. It may not work for everyone, but it's certainly worth a try!

M said...

John-I'm a firm believer that attitude is everything and you are definitely the poster child. What better to go with your frosted eyelashes than colorful feet? Seriously, I'm glad you are doing well even though you must feel you are doubly punished when the treatment bites back too. Indeed computers seem to have a mind of their own sometimes. Do keep me on your update list and do well.


Tom said...


Thanks once again for including us in your updates. Sounds like as in any journey there are always ups and downs. We are certain that God has His hands in this situation as He does in every situation. We will continue to pray that the Lord will give the doctors wisdom and that he will give you a peace that passes all understanding. Phillipians 4:6 & 7 are great verses of encouragement as they tell us that the Lord will guard our hearts where our emotions reside and our minds which is where our thoughts begin. With that in mind and your focus firmly on the creator of the univerise He will be your strength day by day and moment by moment.

Your friends,


Sue said...

Hi John, I was dx's with papillary thyroid cancer in 2001, had surgery and two RAI treatments. Just wanted to stop by and say hello, and to hang in there. Sending blessings and hugs~ Sue