Bob's trip to UPenn: On to Interferon

In CTCL, T-cells residing in
 the skin/blood misbehave

On 1/6/14 Bob and I went to the clinic at UPenn where the Cutaneous T-Cell Lymphoma) CTCL specialists are, and he had more blood tests and biopsies. The initial results did show that there was evidence of burned skin, but it mostly showed the clear pattern of CTCL (shown right). We are awaiting the results of a blood flow cytometry test that will tell us if the disease has entered the bloodstream. Among other things, they will look for evidence of "Sezary cells" that indicate a change in his staging (currently he is IIIA) and a need for more aggressive treatment. We won't get those results for several weeks.

I want a new drug
The next phase of treatment, per the doctor, was to start Interferon A injections three times a week. This is in addition to increasing the Targretin dose and resuming the UVB light therapy. Oh, and he was prescribed an anti-itch drug, Doxepin, which unfortunately has not helped much.

More than 1,000 Sezary cells in the blood tests indicate
 Sezary Syndrome, which is an agressive form of CTCL

The Interferon is a big deal, because it has side effects typical of cancer drugs -- we did not know what to expect. Bob injected himself, and within about six hours came the predicted nausea and headache. Bob described it as a 4 out of 10 on the discomfort scale, not too bad. He said  if it does not get worse than this, he could go to work. The side effects should dissipate over time.

No cure, but control
I think we will have luck with Interferon, but I wish we'd gotten a longer run on the Targretin -- he was at the starting dose for 8 months. From what I have read, with CTCL you develop a resistance to drugs over time, and then you have to move to something else.  There will come a time when Interferon does not work either, I suppose. There are more drugs and therapies in the arsenal, and there are clinical trials, but the longer we can stay on a drug, the better.  If we do cycle through the drugs available, the next steps after that are a bone marrow transplant or stem cell transplant.

The Good News
The good news is, there are lots of new/exciting therapies for lymphomas and blood disorders in development. And, we are so fortunate to have health care and proximity to specialists -- many, many people with this disorder don't have either.  It seems like after fifty or so, everyone has some malady to deal with. This seems to be Bob's. When it is under control, he is in super health -- active, energetic, pain-free. That's a pretty big plus.