A-C Hand Foot Syndrome and prevention

Hi,I was diagnosed in late Feb and am done with 6 chemo treatments out of 8 - have completed 4 A-C and 2 out of 4 Taxol.

I did not feel adequately prepared for one side effect I have experienced and want to post to make sure people are on the alert for hand-foot syndrome and ARE AWARE OF THINGS THAT CAN MAKE IT MORE OR LESS LIKELY.  Adriamycin can cause this and also some other chemo drugs that are given for other cancers. 

I had pretty "normal" side effects first 3 A-C - the nausea, taste issues and appetite, hair loss etc. and coped okay with all of that.  My second week after treatment was pretty good.  But after my 4th A-C treatment, suddenly my hands became very red, swollen and hot - and then parts of my feet.  At the time I was being treated at Fox Chase.  I went to their outpatient clinic and after 5 hours there, they said they didn't know what it was, but I should go home and take one Aleve and put on some lotion.   This wasn't even funny.   For about a week I could barely use my hands or walk around due to the pain.  It was as if you had immersed the body part in scalding water. 

It turns out that although it was never mentioned to me in any handouts or by any doctor, hand-foot syndrome is a not uncommon side effect.  The adriamycin leaks out of capillaries in your hands and feet that have been damaged by previous rounds and literally burns you from the inside out.  After the initial quite painful phase, a layer of skin (or several) peel off.  My last A-C treatment was May 9th and I still am having new areas of dead skin appear and peel off my hands and feet (like blisters or a sunburn). 

Importantly, if you use your hands or feet vigorously in the immediate several days after chemo, especially squeezing or gripping things, you can increase the risk of this happening - such as using gardening tools, biking, wearing tight or hot shoes, etc.  Since I always felt pretty good the day after chemo, I would do some chores or projects on that day.  The day after chemo I was washing something with a big sponge and therefore squeezing my hand repeatedly - essentially pumping the Adriamycin into the damaged capillaries in my hand (especially the right, although both were affected).  They say to avoid even doing a lot of chopping with kitchen tools and etc.  When I went back to my private practice oncologist he recognized it immediately, gave me pain meds and postponed my next chemo for a week.

Cooling hands and feet with ice during treatment might help - doing this now hoping to prevent neuropathy from Taxol.  Also now trying to do as little as possible with hands-feet right after treatment. 

Unfortunately once you've had this, they say if you ever need that chemo drug again, it will recur.  So prevention seems very important to me.  I wish I had know about this before I developed the problem.  I read my chemo handouts very carefully and tried to follow all guidelines, but this was not mentioned.