Wednesday, June 28, 2006
Post Yale update
Blogging from Au Bon Pain at the corner of York and Elm streets near the Yale University Campus, New Haven, CT.
We just completed my visit with Dr. Foss and it went well. My CTCL is re-manifesting itself as the infamous rash, and it looks like it did a year ago: "Not that bad." We discussed the most likely cause of March's Madness (drug reaction) and we're not likely to attempt any serious topical treatments prospectively. While not definitively clear as to the drug that initated the reaction, it was probably the topical Targretin.
Prospectively, we discussed a few options and settled on Interferon (see info here and here), which I will inject myself 3x week. Dr. Limentani in Charlotte will monitor my progress via blood work. Common side effects include muscle fatigue, fever, achiness and some dizziness, much like the flu! Dr. Foss said I should adapt to those side effects within 2-3 weeks. This option seems good to us as I'll be able to self-administer, which maintains a "normal" quality of life (ie: no traveling to Duke). We'll adjust the dosage frequency depending on how I react. This treatment, we pray will put it into remission and can be taken indefinitely to keep it in remission.
Other options we discussed included a clinical trial that Rachelle and I found on the National Cancer Institute's website, re-introducing photopheresis, or narrow-beam UVB treatment (via a light-box...sun tan anyone?). We'll start with the Interferon now, see how I react, then consider other options, if needed. We ruled out the clinical trial due to side effects.
We feel great about the visit and will come back in 3-4 months to see Dr. Foss again. She is very optimistic, saying that most folks diagnosed early (like me) maintain their staging (i.e. Stage IB) throughout their life.
We just completed my visit with Dr. Foss and it went well. My CTCL is re-manifesting itself as the infamous rash, and it looks like it did a year ago: "Not that bad." We discussed the most likely cause of March's Madness (drug reaction) and we're not likely to attempt any serious topical treatments prospectively. While not definitively clear as to the drug that initated the reaction, it was probably the topical Targretin.
Prospectively, we discussed a few options and settled on Interferon (see info here and here), which I will inject myself 3x week. Dr. Limentani in Charlotte will monitor my progress via blood work. Common side effects include muscle fatigue, fever, achiness and some dizziness, much like the flu! Dr. Foss said I should adapt to those side effects within 2-3 weeks. This option seems good to us as I'll be able to self-administer, which maintains a "normal" quality of life (ie: no traveling to Duke). We'll adjust the dosage frequency depending on how I react. This treatment, we pray will put it into remission and can be taken indefinitely to keep it in remission.
Other options we discussed included a clinical trial that Rachelle and I found on the National Cancer Institute's website, re-introducing photopheresis, or narrow-beam UVB treatment (via a light-box...sun tan anyone?). We'll start with the Interferon now, see how I react, then consider other options, if needed. We ruled out the clinical trial due to side effects.
We feel great about the visit and will come back in 3-4 months to see Dr. Foss again. She is very optimistic, saying that most folks diagnosed early (like me) maintain their staging (i.e. Stage IB) throughout their life.
