Bob update: Test results

Bob in Oregon, around  2007

For two weeks we have waited anxiously to hear what the test results were going to be. Here they are:

• No blood involvement
• No lymph involvement
• No organ involvement

 This puts him squarely at stage III and it puts me squarely in the state of happy and relieved. The only point of concern is that they found a 5mm lesion on his lung. Apparently it was also present in a 2012 scan (something that neither of us was aware of).  It has not changed, but will need to be monitored.

What the doctor ordered
The doctor recommended continuing phototherapy three times a week and prescribed Targretin^TM, which has a good track record with CTCL but also some significant side effects. Cholesterol and triglyceride levels go through the roof, and the thyroid "takes a vacation" in her words -- so there are additional drugs to counteract that. He'll need monthly bloodwork to make sure he's staying within normal limits.

He will be on these drugs for long term -- the rest of his life, or until they stop working and we need to find another drug. So the side effects are a big deal. We asked about a drug he had been on before, methotrexate. He had been on low doses with some success back when we thought he had psoriasis. The side effects were minimal (although risky for the liver) and he saw some improvement -- we asked about trying that first. She was amenable, but we have to decide.

It's a chronic condition, and the effectiveness of the drugs are not predictable -- they work for some folks and not others. But I am glad to have some good news, and just so darned grateful we are where we are right now. Next week we're going to a patient education conference in Boston, hosted by the Cutaneous Lymphoma Foundation. I'm hoping we'll get lots of good insights there...