One Year Out

Tommorow is December 17th, which will mark what I've heard others call, my re-birthday. It will be one year since my stem cell transplant, and it feels great that I'm back to work, feeling good, and able to spend so much time with my family. A year out from transplant, I would like to be cancer and GVHD free, but that isn't to be. Even though I still have to deal with those issues, I am feeling great.

Right now I am on my third cycle of Ontak. I had the second cycle in November, and the higher dose I received hit me a bit harder than the first cycle. Its hard differentiating between what symptoms are caused by GVHD, the Ontak, or maybe just unrelated symptoms, but it wasn't the most pleasant month. It was probably a combination of issues, but I haven't felt like myself lately. One thing that was definitely effected was my appetite. I haven't been able to eat as much as normal, and this week I found out that I lost 16 pounds, from 208 to 192 in the last month. 192 might sound fine to some people, but my weight hasn't been that low since I was 15. I didn't trim my fat to 1% and look all cut, but I've lost a lot of muscle mass. I can tell my strength isn't what it used to be, and thats a bit frustrating. I'm definitely looking forward to a point when I'm not on treatment, and have the energy to begin working out again.

So the weight loss recently is going to lead to an endoscopy this week. I'll have that procedure on Friday, with the intent of learning if there is any GVHD or other explanatory factor for my loss of appetite in my GI tract. The GI doctor I met with on Monday, seemed to think that my weight loss is being caused by the Ontak, which he explained can speed up metabolism and decrease appetite. Kate thinks that combination should be marketed as a weight loss tool. If the reason for the loss of appetite is attributable to the medication though , then they can give me other medications to help stimulate my appetite.

The other news came from my PET scan results. From September to November, my scans showed that my lesions decreased from 7 to 4. On this scan after cycle 2, one more lesion disappeared, leaving me with just 3. The main spot where the original tumor was located was stable. A lesion near my shoulder decreased, and the third lesion which was near the original tumor grew in sizeand intensity.

Overall this report is a mixed result. Its great news in three ways...there was no new growth, another lesion of activity disappeared, and one more lesion continued to decrease. The stability of the original tumor is positive, because it had grown slightly on the previous PET scan. The big question is what is going on with the one lesion that is both larger and more intense, while everything else is improving or in check? My doctor can't explain what it could be, and his thought is to proceed with my third dose of Ontak, since it appears to be working with all of these other spots. I'll have another PET scan in January, and he'll decided on a course of treatment based on those results. Its possible that if this lesion responds to the Ontak this time around, that more Ontak will be used. However, if there is more unexplained results, then some consultation will need to be done to determine a further course of action. I usually don't think about my PET scans leading up to them, but this latest result and discussion has me really looking forward to the next scan already.

So this evening I will receive my second of five Ontak infusions for cycle 3. I've had positive results from the first two cycles, and hopefully there will be more progress towards eliminating the cancer after this cycle is done.