After a short battle to get tested for ALK mutation, and being positive, he started on the Crizotinib trial. Within the first couple of cycles, the mass in the lung was gone. He stayed on the trial for almost one year. During that time, he had metastases to the spine that had to be radiated, and then innumerable brain metastases. After a round of WBR, in May of 2012, he became the first person in North America to go on the Chugai trial.
There were immediate results within the first week of taking the drug. Unfortunately, there are downfalls to being the first person on the trial as there were still some kinks that needed to be worked out, one of them being numbers. For whatever reason, liver enzymes, c-reactive protein or some other number that was being looked at, went above where it was allowed to be, so off the trail he went after only 4½ months. We now know (July 2013) that those numbers were not being measured correctly or were off due to the difference in genetic make-up of Americans compared to Japanese.
So, Jim had two doses of Taxotere while waiting to see if he could get on the LDK378 trial, in Boston. We finally got a date to go see Dr Alice Shaw at Mass General on October 23/24 2012. We spent 10 days in Boston, doing all the tests, biopsy, labs, etc. We were there during Hurricane Sandy. We traveled back and forth to Boston, sometimes weekly, for the 9 months that Jim was on LDK378. July 18, 2013 was our last trip into Boston. Dr Shaw was shocked that there had been progression. In fact she said she wouldn't have believed it if she hadn't looked at the scans herself and saw it. All the numbers were great, IJim felt great, but sure enough there was increase in the liver metastases and once again, brain metastases.
We went back to see Dr Gadgeel at Karmanos in Detroit. The first thing that needed to be done was to find something. This is where we heard about the Chugai numbers being off. He was going to try to get us back on that. There was also an option of going to Cincinnati for a trial involving PDL1. The first thing we had to deal with though was those pesky brain metastases! After much consultation, we ended up doing another round of WBR. It was a lower dose, but it was suppose to be enough to take care of it.
In the middle of radiation, we went to Cincinnati to see Dr. David Waterhouse at OHC, in regards to the PDL1 trial. This sounded so good to us and made a lot of sense. We are believers that your body should be able to heal itself, given the proper nutrition and circumstances. The big problem with this study was the long time frame in which you had to go after radiation or being on another treatment before having scans done. We also had to have a new biopsy done. There were so many delays in everything that was being done. It took something like 6 weeks before we found out that Jim was not positive and therefore not eligible to be on this trial.
Something had to get started right away. Jim had been off any targeted or systemic treatment for over 2 months. Dr Gadgeel and his team worked magic and September 28, 2013 he started back on Crizotinib (aka Xalkori). Two weeks later October 14, 2013 I started the Xalkori/HSP90 AT13387trial.
He has done well, but there has been a lot of fatigue, and quality of life is not what it should be. Liver enzymes have gone down, liver metastases have decreased, but again in December 2013, there were a couple of brain metastases that were of concern. January 7, 2014 Jim went through Gamma Knife radiation on 4 spots in his brain. About 3 weeks after, he started having balance issues, feeling light headed, and very fatigued. In the beginning of February, he started falling down and losing use of his right leg and arm. On February 11, 2014, as we went in for the start of Cycle 5, Jim was in a wheelchair. We mentioned everything that was going on. A brain MRI was ordered, STAT! Results of brain MRI showed major swelling and inflammation. Jim was hospitalized and on February 13th he had brain surgery to remove whatever was causing the problem. Most of what was removed was necrosis, but there were a couple of very tiny spots of active cancer. Good thing is, they were removed and the MRI taken afterwards showed nothing.
Jim started back on Xalkori/HSP90 AT13387 on March 10th while still in inpatient rehab. He spent thirty-eight days inpatient, between the hospital and rehab before he could come home.
We saw Dr. Gadgeel on April 8th. We were hoping that Jim would start on something new, or actually something old...Chugai, as it is the only ALK drug so far that passes the blood/brain barrier. Four bouts with brain metastases is enough!
Unfortunately, Jim is now dealing with 2 compression fractures in his spine and he started having symptoms that resembled those in January/February. He has been on pain medications for 3 weeks now, non-stop. We were just told that he has 2 new spots in his brain. We hate to see what "treatment" they will come up with now.
We had been talking about trying something different and "unconventional" not only for dealing with pain, but something that might also help with the cancer. Medical Marijuana (Cannabis Oil) seems to be that option. Unfortunately, insurance doesn't cover this! Jim has been out of work for almost 4 years and with everything that we have gone through, there just isn't enough funds to do this.
We are reaching out to all of our family and friends for any help they can give us to get this treatment. If all you can do is pass the word to your friends and family, it would be greatly appreciated.
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