09/19/09 – Round 2 Completed & Off to NYC

On Friday I completed Round 2 of my treatment (Rituxan + High Dose Methylprednisolone). There were a couple of positive things that happened this time as compared to last month. First of all we were only down there for 3 days instead of 4. Secondly, we stayed down there for the two nights, which made the whole process a lot less stressful. Thirdly, my White count has dropped by more than 50% since last month, and my Red count is slowly getting better, so that is all pointing in the right direction. And lastly, the side effects seem to be less than last time, and I think my recovery time will be much quicker. The last one is important because we are leaving for New York on Tuesday and I was hoping to feel well enough to travel by then. End of Short Report.

Going into these treatments there is always a concern that it is not going to work and even though it is too early to tell how well this round of treatment will work, it looks like we are moving in the right direction. The most important thing of course is to get the Autoimmune Hemolytic Anemia under control, and it appears that is happening. Along with the AIHA getting under control, it is also having an effect on the CLL, by dropping the white count, which was rising quite rapidly. I think that the fact that I seem to feeling better after this treatment is a good sign. As usual I have lost my sense of taste and I feel a little swollen (from the IV's), but that will probably subside in a couple of days. I felt pretty good all day today, but started feeling a little tired and run down late this afternoon, so maybe the steroids are wearing off. If the treatment follows last year's schedule, I recover quicker after each treatment, so I hope that is the case this time as well.

After a lot of questions, contract issues (yes, contracts), and travel arrangements, we are going to New York for a photo shoot. As you might remember I mentioned the possibility in my last post that we might be going to NYC to participate in a photo shoot for one of the drugs I am taking. I had previously participated in a focus group for that drug and they are apparently putting together a marketing campaign for it and may want to use me, and perhaps Donna. We are not sure if the pictures will be used in ads, brochures or what, but the contracts covered just about everything. They might not even use the pictures, but at least we get a trip to The Big Apple out of it. We are leaving Tuesday and they are paying for 3 nights and we are adding two additional days to do some more sightseeing. I haven't been to NY in over 40 years and Donna has been there two times since we have been married. So at least there is something positive coming out of this mess.

Terry

09/02/09 – Looking Good so Far

This Tuesday I had my appointment with Dr. Kipps and also an IVIG infusion. I would say that it was a good visit. My lymph nodes are shrinking, and some have disappeared. My liver, which was slightly enlarged, is back to normal size, and my spleen, which was measured at 8 is now down to 2. (I won't go into what the measurement means, but just know it is a good thing). My white count is decreasing and my hemoglobin has gone up. All of these things mean that the treatment is working. We discussed how many treatments I would probably need and the number still is three, but we would leave it open until after the last round. I am scheduled for my second round in mid September. Although my white count is still high, Dr. Kipps was very happy with my progress so far and thinks the next treatments will go even better. He did talk about using some kind of clean up therapy after I get done to try to completely wipe it out to put me into a longer remission. (End of Short Report, but you will miss something if you don't read on!)

As I mentioned in my last post I felt pretty lousy for a couple of days after my last treatment. Last year when I had this treatment I seemed to recover faster each time I had the treatment, so I am hoping this will be true this time as well. But in less than a week I was back to pretty much normal, so I guess it is a small price to pay. Since the next round of treatments will be only 3 days we will probably stay down there for two nights and not drive home each day. It is a long drive after an 8 hour infusion. Because the high dose steroids compromise your immune system I am on a bunch of prophylactic antibiotics, antifungals, etc. The one thing I don't need is to come down with something during this treatment.

About 2 months ago I was asked to go to a focus group to review some magazine ads for the main drug I am taking, Rituxan. The just wanted our opinions about the wording, layout, etc. I didn't think much about it until late last week when I got an email from someone that was representing the advertising agency that is putting together the ad campaign for Rituxan. They wanted to know if I would consider being photographed for their ad campaign. I said sure, why not, what else do I have to do? Well, they called me back this week and they are sending me a contract and setting up the photo shoot. The only bad thing is that it is going to be in New York City. I know, life is tough. Since they seemed so interested in me, I decided to push my luck and ask about the possibility of my wife being able to join me. They got back to me and not only will they pay for her to fly out, but they may also want to use HER in the photo shoot as well. I asked Dr. Kipps about traveling and he said no problem, but he would like to give me an extra round of IV immunoglobulins during my next treatment just as a precaution. This is all happening pretty quickly and if it all works out, they want us there September 23^rd for a couple of days. Since we are going to be there anyway, we will probably stay a couple of days extra to play in the Big Apple. I am a realist and know that this may not pan out, or they may even get me there and decide I'm not what they are looking for, but that's OK.

Terry