So, after a pack of steroids and 6 days of not taking Sorafenib, my rash is reduced to blotches on my arms and legs and redness on my face.  My feet are getting better every day.  But I did have to give up my beloved Monday morning Zumba class this week.

Dr. O’Regan called us in this morning to decide what to do.  She saw enough improvement that she recommended restarting Sorafenib at half-dose today.  We were a little startled to discover that she’d booked me in the chemo suite tomorrow with the standard (non-trial) AC-T treatment, just in case.  Her thinking – restart Sorafenib or get a chemo treatment in before we go on vacation, but don’t do nothing.  That’s fine with us.  It would’ve been nice to be side effect-free for St. Thomas, but, frankly, not doing anything is worse than dealing with the freaky side effects.

Why stick with the trial?  Dr. O’Regan seems certain that everything I’ve experienced is reversible, so that makes us braver.  Also, there’s a chance the rash won’t reappear at all, which has been the case with others in the trial.  The greater concern, though, is the hand/foot syndrome.  But Dr. O’Regan said she’s seen that reverse and stay away, too.  Of course, she also said, “We’ll keep our fingers crossed.” (!!!)  If things get too bad, I’ll just stop taking the pills.  At that point, I’d almost certainly go off trial and start the standard chemo.

Our schedule:
We leave this Friday 3/29 for St. Thomas and return 4/6.  I have an elective biopsy of the original tumor 4/9 (samples for those poor mice), a second PET scan 4/10, and 1st chemo infusion 4/12.

Hopefully, any photos we post in the next 10 days or so will be more Carribbean Postcard and less New England Journal of Medicine!


Creative ways to improve my mobility.


Monday morning I taught Zumba.  This morning, I couldn’t even get the kids ready for school.  Definitely the most upsetting day since my diagnosis.

Yesterday afternoon Dr. O’Regan told me to stop taking Sorafenib because (I know now) of the pain I was starting to have in my feet.  I was discouraged and considered taking last night’s dose anyway.  Good thing I didn’t because this morning I could not walk.  Searing, burning pain in the bottoms of my feet. Sorafenib rash

12 hours and some pain meds later, I can hobble around.  The rash is still hideous and maddeningly itchy, but slightly better after having missed 2 doses now.

I go in Thursday to find out what comes next.  What a rollercoaster this is.



Cancer is a Good Cure for Vanity

So itchy!  Legs, arms, feet, hands and stomach.  If it moves to my face, it will have to compete for space with the acne.

I am going to look HOT in my bathing suit on St Thomas!

Feeling blue last night, I got the most encouraging message from a young woman who has just completed this same trial (she is cancer-free) and it was so timely and so appreciated!

Thank you to all of you for the comments, emails, phone calls, cards – they really mean a lot, and sometimes come at just the right time.


A Happy (and itchy) St. Pat’s Day

First, the fun stuff.

Our day started at 2am when our 6-year-old son appeared at my side of the bed, yelling,
“The leprechaun came and he peed in my toilet!”