Tuesday, January 14, 2014

Bob update: Setback and regroup

Bob on a trip to see my folks in Indiana
If you read "Tale of two dermatologists" you know that Bob has had a setback with his illness. Recall that he has Cutaneous T-Cell Lymphoma (CTCL), a rare cancer. This cancer is not well-understood. It is known for progressing differently in different people, and also for behaving unpredictably. In December, we had a perfect example of its unpredictability.  Bob had a series of PUVA light treatments that should have taken him to the next level of wellness. Instead, the treatments threw us for a loop, taking us backwards, all the way back to his pre-treatment condition.

No PUVA for you!
Bob had five PUVA light treatments that caused a flareup in his skin. Did the treatment center staff burn his skin? I think so, but in the end probably doesn't matter. If the PUVA light treatment was mismanaged,  it just hastened a trend that was already happening. The drug he started in April 2013 (Targretin) was slowly losing its effectiveness, and the PUVA was an attempt to kickstart an improvement. Instead it made him worse. And so it goes!

Two steps back
For the first time since he was diagnosed, Bob *voluntarily missed full days of work due to redness, pain, and itching. He said his skin redness/rash felt like a bad sunburn, and the itch was actually painful. It's almost impossible to sleep with the sting and itching. It's hard to be in his shoes, but it is also hard to watch.

*I say voluntarily because at one point he was going to work, only to be sent home by the company nurse.

Stay tuned for more...


  1. Fingers are crossed that he can get some relief & hopefully a cure..

  2. Oh dear. Once again, all I can do is wish Bob well. I too am hoping for good results from a successful treatment protocol.


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