Thursday, January 2, 2014

Bob update: Tale of two dermatologists

Bob in about 2006, with Harv
 I wrote recently about Bob's setback with his  CTCL treatment. For whatever reason, it seems we are back to square one with his skin -- his skin looks like it did before he was diagnosed (warning, photo below, not gross but very red).

Here is the scoop.

Dermatologist A: Narrow band treatment
Bob has been getting narrow band light treatment for two years at one dermatologist's office -- Physician A. When he goes in, he chats with the staff and they ask how he is doing, and depending on his answer ("I'm a little burned," "I'm a bit itchy," etc) they adjust the length and strength of his treatment. It has worked decently but he still has a rash -- just less prominent. He wanted to try to eradicate the rash entirely so he wanted to try a stronger treatment,  PUVA.

Dermatologist B: PUVA treatment
In December Bob switched to PUVA treatment. He went to another office, Physician B. PUVA penetrates more deeply, and psoralens (a drug) is taken to make the body more susceptible to light.  It is more risky, and it's a pain in the neck as you have to take many precautions, wear sunglasses, and in his case he has to miss work.

The first treatment left him a little burned, and he told the staff. No one ever examined him or glanced at his skin. They all told him "it has to get worse before it gets better." Every treatment he felt a little worse, and after treatment #5 he looked like a lobster and had a rash. He went in for treatment #6 but told the nurse he needed to see a doctor before he went into the light booth. The nurse got the physician's assistant.

This is Bob's skin, head to toe..
Oh My Goodness, indeed!
The physician's assistant took one look, said "oh my goodness," and got a doctor. They told him, "You've got a bad burn, and you need to stop treatment. If it gets worse, or you have blistering go to the ER." Poor Bob was miserable -- no sleep, clothes were painful to wear, he felt hot  but also got chills.

He had his in-office appointment with the Physician B on Christmas eve. Physician B looked at Bob's chart, and he seemed alarmed. He was very honest, telling Bob his staff did not follow protocol...
  • They should not have increased dosage if there were signs of burning.
  • The staff did not examine his skin before treating.
  • The treatments strength should have been adjusted downward because Bob is taking Targretin, a retinoid that makes you photosensitive.
This doctor was no longer "in charge of light therapy" but he had developed the protocol for the office -- and it was clearly not being followed.

I wish I could say his burn healed and he is back where he was. But something has caused a flareup in his disease, or maybe there is some kind of allergic reaction. Two weeks after his last treatment, he is back to where he was when his his condition was not diagnosed and yet untreated.

Bottom line: We don't yet understand why he is not getting better. We have an appointment on Jan 6 at the  UPenn dermatology center to see what is going on and why we seem to be back at Square One.


  1. I can't imagine how frustrated you and Bob are feeling right now. That is just terrible that the staff in Physician B's office was so dismissive of his concerns, and didn't even look at him! I hope that the dermatologist can give you some answers next week, and that this flare-up or reaction or whatever it is calms down soon. Tell Bob we are thinking of him...

  2. That looks so sore :-( Hopefully you get some answers later in the week, fingers crossed.

  3. So very sorry, but it just goes to show how many flaws there are in medical care. When I was in the hospital, I was glad I was able to speak up for myself and question what was being done. I also became an advocate to the other woman in the room who, as it turned out, was not being properly cared for--complications arose which should have been avoided.

    In Bob's case, you put all your confidence in the caregivers and they failed you. Had you known more, perhaps you might have avoided some of the problems, but how could you have possibly known with such an advanced, complex treatment. Clearly Bob was not properly treated. The saddest part is that it has set him back and now you must make all kinds of extra efforts to try to fix things.

    Bless the fact that they caught it before it got even worse. Now all I can do is wish you well and hope UPenn can get you back on the right track sooner than later.

    Sending prayers and good wishes.


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