Tuesday, April 2, 2013

Twofer! Bob update and Done ponderin'

We got exceptional service/care here.
Hi All, a CTCL update, probably the last one for a few weeks. We went to UPenn on Monday April 1. Bob's CTCL is at stage III-- with skin involvement over 80% you are automatically stage III.  We still need more info to complete the staging and confirm the diagnosis:
  • Five vials of blood were drawn to do more sensitive testing, for Sezary cells  and other markers.
  • Bob will have a PET/CT scan to check for lymph involvement and other issues. 
  • Dr. R  will call us on the  18th, and based on these results they will confirm the staging and establish a treatment plan.  
I was shaken by the stage III assessment, but UPenn commonly sees stage III and IV patients. Dr. R  told us that the disease has an unpredictable progression but many patients respond well to the first lines of treatment. She considered Bob's disease to be a faster onset (which is not ideal) but he is in great physical shape (which is good).  We learned that the kind of chemo that works on some cancers does not work for CTCL -- as soon as the chemo stops, the disease comes right back. The strategy is to treat with "low toxicity" drugs that keep the disease under control. Bob will be on drugs to manage this for the rest of his life or until they find a cure.

That's the scoop.

Here is young Ponder under saddle with her loving owner. Great life story, so far, huh?


  1. Prayers for you and Bob. Hope you can get some horsey hugs soon.

  2. I have been following your blog for a long time and really enjoy reading them :) Just wanted to let you know that you and Bob are in my thoughts and prayers!!! -Karen from Rochester, NY

  3. Keeping Bob and you in my prayers as well. Sounds as if Penn is on top of things with a high level of expertise and experience with this. Not the ideal report, but certainly encouraging to hear that results from treatment are usually very good.

    Sending more hugs your way.


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