I have been meaning to post, but have had a busy July with family. I have not posted since late May, I think. I have waited until I have news to report, so here it is!
As background, I was diagnosed in March this yearas Stage IV with lung mets, no primary identified then or since. Tested negative for BRAFe, k, and g. Limited treatment options locally, so went to MD Anderson almost 3 weeks ago for 3 days, My Onc there is Dr. Wen Jen Hwu. I am extremely impressed with MDA - a large operation, but very personal and caring. Scans showed barely measurable growth in lung mets, since they are barely measurable in the first place (.5 cm). Dr. Hwu said the mets may not have grown at all over the 3 months since the first scan. MRI of brain also negative. She offered me the opportunity to enroll in the Ipi/Temador Trial at MDA, which I gratefully accepted. She answered all my questions over about an hour about the trial, and I spent around another hour with her our first appointment. Had a small tumor removed from my left shoulder that appeared about 8 weeks ago, but Dr. Ross left another on on my left thigh to use for measuring possible progress from treatment.
So Tuesday I will travel to Houston with my wife for two days to begin treatment. The Ipi part is "high dose" - 10mg/kg. The Temodar is oral chemotherapy taken over 4 days of each 3 week cycle. The treatments are scheduled for every 3 weeks for 4 cycles, or a total of 3 months. Scans are done at 6 and 12 weeks. Maintainence can occur indefinitely if there is a benefit to the initial treatment, on a reduced frequency schedule. Current research on Ipi is focused on using it in combination with other therapies that have shown effectiveness. The idea is that there should be at least an "arithmetic" benefit to such a combination (i.e. 1+1=2) but possibly "geometric" benefit (e.g 1+1=3). This is the purpose of this study. High dose Ipi has more side effects than the lower dose (3mg/kg - available in the Compassionate Use Study), but also higher efficacy. The side effects to both treatments should be manageable, but the list of possible ones is long. I have read here today and in the past about side effects for each drug seperately, but will post again about how everything is going as we go forward.
My kids are at camp this two weeks, so no family issues with my first treatment. My wife will be with me for the first treatment, and she has arranged family leave. Our insurance (though her work) and her benefits are very good, so we are fortunate in that regard. I just spent time with my Mom and my sister and her family during vacation. I emailed them a couple of weeks before that to let them know about my diagnosis. They have taken the news pretty well, I think, and now understand that I have a good plan to fight this disease. My wife and kids are encouraged, as am I, by my initial visit to MDA. I will need to tell friends here very soon since my hair may soon be a slightly different color (white!) and I will be a regular visitor to Houston for the forseeable future.
So that is my story for the recent past, in a nutshell. I am encouraged somewhat that the disease has not progressed much, if at all, since initial diagnosis in March. Although my work with the U of Colorado over 3 months did not yield any results, the time spent there has not harmed me either. MDA will keep my Onc at CU informed by email about significant developments in treatment, and they will be my local backup if needed.
In the meantime, I apologize for not keeping in better touch with those of you who have become friends and correspondents through this Board. You have helped me sustain a positive attitude and sense of humor about this disease, as well as helped with information. I will write when I can, but may resort primarily to posting here, depending on my energy level this week. Thank you all for your support, good wishes, and prayers - they have helped us more than you can know.
Jim in Denver