About Time to Post

It has seen quite a while since I have sent out an update, but as they say, no news is semi-good news. In January Dr. Kipps didn't want to see me for 6 months since there was no disease progression. At the beginning of June I had my 6 month visit with Dr. Kipps and the report was generally positive. My blood numbers have been slowly going up for the last 3 months or so, and my nodes have grown by a small amount, which does show disease progression. I am having no other B symptoms (fatigue, sweats, weight loss). So Dr. Kipps was not overly concerned, but said he wanted to see me in 3 months.

I still am getting my monthly IVIG infusions (see link on right side of page if you don’t remember what these are) and with that I am getting a monthly blood test. I am a little disappointed that the disease has shown some progression 18 months after the clinical trial ended.  I was hoping for a longer remission. It is not clear what Dr. Kipps will say in September. I know he doesn’t like the disease to get too far along so as to limit your treatment options. But with no major symptoms and such a slow increase in my blood number, I may not be to the point where I need treatment for another 6-12 months. The longer I wait, the better my treatment options are. There are several new treatment protocols that are currently being tested and these new treatments are less toxic, non-chemotherapy based and even though they may be years away from FDA approval, I hope that UCSD and Dr. Kipps will have Clinical Trials available using some of these drugs when I do need treatment.

Another reason I have been delayed in posting because the news for some of our friends has not been so good. I kind of feel guilty posting my status, when we have others who are struggling. Our friend Tom has COPD and is struggling. My CLL friend Wanda who has had a transplant and was diagnosed as ‘cured’ of CLL last month, was then diagnosed with aggressive breast cancer the next week. Donna’s Dad Don, is having some health issues, has been in and out of the hospital and we finally have a diagnosis and a treatment plan. He is home now and is slowly getting his strength back.

And perhaps the saddest situation of all is that our friend Carol had a relapse of her melanoma and recently passed away. She had the most amazing spirit during her ordeal and was an inspiration till the end. Please keep her family in your thoughts and prayers.

For some strange reason the drug companies think I am a good candidate for advertising. The drug company once again asked for our assistance in advertising their product. In March we were approached about being in a Rituxan patient information video. This time they wanted both Donna and me, and it was going to be a video instead of a still photo shoot. So in May we flew to New York and participated in the filming of the video. There were other Rituxan patients, but I was the only one with CLL. We sat around in an informal setting and answered questions about diagnosis, treatment, care giving, etc. We also had a one on one interview with a moderator that asked us additional questions. The video is going to have interviews of patients, doctors and a drug company representative. It will be handed out to new patients that are going to take, or are considering taking Rituxan. I think that this will be beneficial for patients to get some first hand knowledge before they need treatment. I hope it helps them.

All the people involved in the production (about 30 of them) were so great; they really made it easy for us to participate. After the two days of shooting we visited West Point (Amazing Place) and then we stayed 3 more days in Manhattan and took advantage of being in the Big Apple.

On a more personal note I am playing A LOT of golf. Also we are really enjoying being grandparents, and Wyatt is really a great little boy.

Terry