My name is Susan and I'm a Yahoo! Group junkie

Good news: I went in for my monthly visit at the City of Hope on Monday and my Eosinophils (EOS) are still behaving. I mentioned to Dr. Forman that I'm a member of a Yahoo! Group for individuals with EOS issues. The group concensus is that it could take as long as six months after tapering off high-dose steroids for the EOS levels to go haywire again.

He agreed and took out his pen and signed me up for monthly visits for the next six months. Most patients who are one-year post transplant get to space their visits three or six months apart, but this EOS business is keeping me on a short lease.

Dr. Forman was curious about how I found an EOS group and I told him there was a little thing called the World Wide Web that made it easy for patients to find their peers. The rarer the disease, the more desperate patients are to make connections. Most of the members of the EOS group have been diagnosed with HES (Hyper Eosinophilic Syndrome). Almost everyone has a horror story of becoming deathly ill (much as I was last summer) before doctors reached a diagnosis. I was actually pretty lucky to be under the care of a hematologist at the time.

As I've mentioned before, my preoccupation with the EOS has taken my mind off the possibility of a cancer relapse. Even Dr. Forman said, "I almost forgot the reason you first came here," as he checked my neck for swollen lymph nodes. And my email messages from my Mantle Cell Lymphoma (MCL) group go mostly unread these days.

It's also taken my mind off my cutis laxa (lax skin) disorder that, I'm ashamed to admit, was a bigger blow to me than finding out I had cancer. Mantle Cell Lymphoma is treatable; cutis laxa is not. I had fears of looking like a shriveled prune before my 55th birthday, alive but repulsive. In the last month, two other patients, a man and woman, have emailed me after finding my blog post on cutis laxa. Both were extremely relieved to find someone else with the same rare condition and are eager to share stories, feelings and recommendations for plastic surgeons.

I plan to talk by phone tomorrow with the woman with sagging skin. I may even suggest that we start a Yahoo! Group.

A Stem Cell Miracle and a Revealing Look

By now, most Cancer Banter readers know the difference between an autologous (self) and allogeneic (donor) stem cell transplant. Both procedures are commonly used to treat blood cancers, such as lymphomas (both Hodgkins and non-Hodgkins), leukemias and multiple myeloma.

That's why I was blown away when I saw an article in today's LA Times, "Stem cells apparently cure boy's fatal [skin] disease." (For an excellent, explanatory video produced by the University of Minnesota, click on Nate Liao.)

The "fatal disease" was a genetic skin condition known as recessive epidermolysis bullosa. Patients with this disease lack "a critical protein called collagen type VII that anchors the skin and lining of the gastrointestinal system to the body." The result is extraordinarily fragile skin that "tears and blisters with minimal friction."

The only known treatment previously was to wrap the skin, mummy-style, in bandages. But a two-year-old boy from Minneapolis received an allogeneic stem cell transplant and has apparently been cured. The boy's body is now pumping out the missing collagen type VII.

This is the first case of using a stem cell transplant to treat a condition that does not involve blood, according to the LA Times. The whole thing amazes me. I can't even begin to speculate why a stem cell transplant would stimulate the production of collagen. And, apparently, doctors and scientists must be scratching their collective heads about the connection too. Notice that the article and headline didn't say that the stem cells cured the disease; it said that the stem cells "apparently" cured the disease.

I also have a rare dermatological skin disorder, cutis laxa, that, fortunately for me, is not fatal. It does, however, make me morbidly afraid to be seen in public in a tank top or swim suit.

I've been taking baby steps in revealing my deformed skin. I've started by wearing cap-sleeve T-shirts that show the wrinkled skin at the top of my arms. I recently became a little braver and wore a tank top to my strength training class at LA Fitness. Now, in my boldest move yet, I'm publishing a photo of the back part of my arm pit. As you can see, the crinkled area is circumscribed and there are clear demarcations between the healthy and unhealthy skin.

I've been documenting the skin condition with photographs so that my dermatologist and I can tell if the prescribed antibiotic I've been taking is effective in preventing the disease's spread (i.e. continued destruction of elastin).

For some less revealing shots (at least physically), click here and then type in "Carrier" as the password. My lovely and talented friend Skye has posted candid photos from my March 2007 "Bon Voyage Party" and February 2008 "Comfort Party."

I Love Latin

Don'cha just love Latin? Doctors, scientists and priests often use it to make the mundane sound high falutin'.

For example, doctors from the Dermatology Grand Rounds have concluded that I may have cutis laxa, which is Latin for loose (or lax) skin. Before you say, "DUH," keep in mind that this is an actual medical condition. Emedicine.com describes cutis laxa as a "rare, inherited or acquired [mine is acquired] connective tissue disorder in which the skin becomes inelastic and hangs loosely in folds. . . . It may be preceded by an inflammatory rash." It certainly sounds and looks like me.

I'll visit my dermatologist again next week for another biopsy that will measure the amount of elastin in my skin.

My top three questions are:

• How did I get this? (Answer: unknown)

• What, if anything, can we do to stop the spread?

• What can we do to cosmetically improve the look of the loose skin?

I asked my USC liaison resident if any of the other doctors thought that my condition was related to natural aging, loss of weight or loss of muscle tone. "Oh, no," she said. "The doctors were very impressed with your case. Everyone was in agreement that your skin is abnormal."

I don't know why that makes me happy to hear. I guess, in addition to being validated, I'm glad that none of the pros think that my skin is just naturally old and flabby.

I didn't mention it to my USC resident, but I suspect that I also have at least two other disorders: gluteus laxa (saggy butt) and mammo laxa.