Monday, March 25, 2013

Harv update and PSA on CTCL

Pardon the wonkiness of this layout. It's for your protection :-).

So here are pix of Harv on 3/24 about 2 1/2 weeks after the last photos. Whether the last photos were misleading or he's put on some weight, I like his look here better.

  I'm breathing a sigh of relief.

While I wanted to share the good news about the Harvster, I also wanted to use these photos to put the skin pix below the fold -- at least a little. Again, they aren't bad, but I don't want to subject anyone to a medical issue on this blog which is, after all, about horses.

Bob's situation: Cutaneous T-Cell Lymphoma (CTCL)
Because Bob is out and about, and going to the gym, and working, and cycling, and contra dancing,  you can certainly make the case that he is doing really well. He's not a complainer, so you won't hear him fussing about his condition. There are many conditions that are painful while outwardly you look pretty good. But this rare disease can, in later stages, be pretty awful inside and out.  In one keynote speech at a world conference on CTCL, the speaker called CTCL "one of the most disfiguring diseases known to man today." When it is not controlled, it can be compared to leprosy. In the interest of spreading the word about CTCL here is a picture of his skin.

This is the back of his upper arm, a reasonably close-up shot. You can see it is red-patchy, and from any sort of distance you lose the mottling and just see bright red. It is extraordinarily itchy (pruritis), periodically it is flaky, and it looks and feels a lot like a bad sunburn. And -- it's all over his body. Head to toe. All the time. For the last two years. Back when they were trying to diagnose what this was, they  they could not even do an allergy test  because he didn't have a clear patch of skin to test. He has other symptoms too -- hair loss, nail problems, and hands and fingertips cracking.

For the first two years Bob was told he had psoriasis, after routine diagnostics including skin biopsies. I searched google scholar and medical databases with terms like "full body rash" and "erythroderma" -- and guess what? CTCL was among the search results. When I asked the doctor about it, he gently dismissed the question with the response, "people who have that are very sick." This was not a crappy doctor either -- this was at UPenn.

 CTCL: a Public Service Announcement
CTCL is rare -- only about a thousand cases are diagnosed a year -- and not much is known about it. Unfortunately many doctors only heard about it while they were in med school, and they may never have seen a case -- don't count on them to recognize it. Its incidence is increasing dramatically -- it's rising faster than melanoma. In fact, all lymphomas are seeing a rise in incidence. CTCL is most likely to occur:
  • In people over the age of 50
  • In men more than women
  • In black men more than white men
  • in a very slow progresson (some people have had a rash or skin coloration since childhood)
It's usually misdiagnosed for years, in part because of its rarity (six cases per million) and in part because tissue biopsies and other tests are not very good at detecting CTCL till it is more advanced. Bob's case is unusual in that it was a sudden, dramatic onset. Often the 'rash' people have had since childhood suddenly starts to get worse, and then they find out they have CTCL.

Take Home Message: If you have, or know someone with,  worsening psoriasis, or with a persistent bad rash, and they fit the traits listed above, mention this to them. Believe me you want to catch it early.

Not "just" psoriasis
BTW I'm not making light of psoriasis and would never say "just" psoriasis. I have a new respect for people with psoriasis. When Bob was initially diagnosed with it I joined a few support groups and the stories of people with psoriasis -- especially young people -- are heartbreaking.  Psoriasis can be debilitating, and the drugs are expensive. Many, many people can't afford them.

Thanks for listening.


  1. My sister has psoriasis - it *is* awful I will pass this information on to her.

  2. Wonder if CTCL and psoriasis have any connection to each other. I noted on one website that there may be a virus involved.

    Either way, it is far better to have a definitive diagnosis rather than being in the dark about what's going on. Once again, there seem to be some pretty effective treatments. Apparently they need to tailor each one to the individual patient. I wish you and Bob well on this journey. Hoping he feels better sooner than later.

  3. Not only are skin conditions debilitating and the drugs to treat many of them expensive, they come with horrific side effects. Prayers to Bob.

  4. Thank you for the information, you never know when or who it might help. I hope Bob is able to find some relief now that he has a proper diagnosis. Glad to hear Harv is looking better.

  5. I think Harv looks nicely filled-out and quite happy. :-)

    My new rheumatologist asked me several times if I've ever had psoriasis (no, never). Apparently rheumatoid arthritis is related to that, too. All of this auto-immune stuff is big-time scary, especially because these diseases seem to be on the upswing. What are we doing to ourselves? My illness came out of nowhere as well. Nobody else in my family has had anything auto-immune (how about Bob's family?) and I was fine, with zero joint pain, until last October. Now I have weird lumps on my fingers/hands and swollen, painful joints.

    I really, truly hope Bob gets some relief soon. I can't imagine being "all-over itchy" - I would be the crankiest person on EARTH, seriously. Poor man!

  6. I am impressed with your quality research and empathy with people who have this and other similar conditions. It's so hard to imagine what these conditions are like when you don't have them. I suppose we all know people who have some kind of problem that plagues them 24/7. I hope the proper diagnosis will result in successful treatment.

  7. My father-in-law had T cell lymphoma and it took quite a while to get a correct diagnosis. He was fortunate in being in DC and having access to NIH and the Navy Med, where they were sophisticated enough to recognize it. I am rooting for you and your husband and it is kind of you to warn people how hard to diagnose this cancer is. I'll be thinking of you and hoping for the best. Lisa Young

  8. You sound very knowledgeable about CTCL. Thank you for that! I wish you had said a little more about what Bob is doing to manage his CTCL. I know you've researched CTCL thoroughly, yet I'd still like to ask if you've considered or tried PUVA (Psoralen + Ultraviolet A)? A word of caution: PUVA itself can cause pruritis in the hands of overzealous dermatologists. So, I would ask for a slow ramp in energy, not more than 0.5 joules per visit. And I would ask for a cap of 4 joules for a month to see how that does. I know of a case of a first-timer who was ramped up to 7.5 joules (2 visits per week), despite benefits starting at 2.5 joules, who then had to deal with PUVA-induced pruritis for 3 months. I fretted about Bob all day yesterday, and prayed for him, and will continue to pray for him. You both have a heavy burden to bear.


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