Hi All,
First, my apologies to those of you who have heard a lot of this already. You may delete or read on and be bored. The choice is yours :-)
Back in the beginning of May a CT scan confirmed what I had suspected. The drug I was taking had stopped working. Dr. D and a doctor at Mass. General Hospital reviewed the scan and suggested that I enroll in a clinical trial. There were three available at the time. One, as it turned out, was not accepting any more patients. A second one would most probably have killed me. So, the third one was chosen. I started that on May 24th after a lot of screening tests, lab work, etc. This was not pleasant! I became severely dehydrated after two days. That got fixed but on day eight I was so weak that I could barely walk into the exam room when we went to the hospital. At that time they decided that I should take a break from the new drug (four days) and start again on a lower dose. I did that and seemed to tolerate the drug more easily but I wasn't feeling any better. Quite the contrary. However, having been told that the drug was very slow to work, I stuck with it for another few weeks.
At this point Dr. D really starts to hear me and decides not to wait until July 12th when a CT scan is scheduled as part of the trial with results to be reported on July 20th. She ordered one on July 6th and got the results the same night. The drug was not working and I was continuing to get worse. I had an appointment with her on the 8th where she gave me a ton of information about what she and the doctor at MGH had talked about and how they thought my treatment should go from there. I was so excited I could barely speak (please remember that I am mutant in every way)! In the short run, beginning tomorrow, I will be given chemotherapy. My body has proven that it tolerates chemo very well and that chemo works well for me. Its only down side is that the effect is fairly short term. BUT, the next step could be very exciting. One of the things they wanted me to do, and one that many patients refuse as I understand it, is to have another biopsy to determine if the mutation seen 18 months ago had mutated again - as it could have. While Dr. D was saying in fifteen different ways that I didn't have to say "yes" to this, I was jumping up and down saying "yes, when, where?" I had the bronchoscopy yesterday and the tissue collected will go to MGH for testing which could take up to a month. Based on the results of those tests, MGH will tailor a treatment for me.
While I had a low point over the past couple of months, things are once again looking up and I am very happy :-)
As always, thank you for all your thoughts, prayers, and good wishes. I do have a favor to ask though. Could you turn your thoughts and prayers in the direction of my Uncle Al? He is having a tough time right now and can use some wishes for comfort and peace.
Thank you! Rita