Friday, February 5, 2010

The Plan

Well this week didn't go very well, to put it mildly, in terms of getting the information that we needed to make a decision about what to do. So here we are at Friday and finally have something to report. Sean's repeat bloodwork came back and showed that his AFP is still elevated and is now at 81 (it's rising). His most recent CT scans (chest, abdomen, pelvis, and brain) did not show any new spots anywhere in his body. So without the scans, by his bloodwork we know that he is no longer responding to the Gemzar/Taxol treatment and so we cancelled his appointment for treatment that was supposed to be for today, which would have been the start of his 5th of 6 cylces. We're obviously disappointed that the treatment is no longer working but haven't given up hope yet.

Sean, in his many hours of insomnia, has done quite a bit of research on the available clinical trials for testicular cancer patients. The study that we have found that looks most promising is being conducted by Dr. Darren Feldman of Sloan-Kettering Memorial Hospital in New York City, New York. I was able to speak to Dr. Feldman personally on the phone today (with Sean listening up against the receiver) and received a LOT of information about the study. This study just moved from stage 1 to stage 2 this past week so we're coming in right at the beginning of the treatment stages.

Dr. Feldman explained to me that during the first stage, the drug that is being tested was administered to many different patients with all different types of cancers, not just Sean's type. Of the patients who participated, only one had the germ cell tumor cancer that Sean has (testicular cancer) and that patient was shown to be in remission for 14 months from the treatment that he received. Dr. Feldman and his research team have now extended the study into Stage 2, in which they are now only accepting patients with Sean's type of cancer who have exhausted all other testicular cancer treatment options. We went over the basic eligibility requirements for the study and Dr. Feldman said that from everything I was able to tell him about Sean's case, he is a good candidate for participation in the study.

Sean's participation in the study would not require us to relocate to New York (darn!) but travel will be required. The plan right now is for both of us to go out for the initial consultation and testing together. Dr. Feldman said he could work things around so that as long as the testing shows Sean to be eligible for participation, he could start him on the study during our visit there, so as to save us a trip out. He also told us about a program a patient of his had been on called "The Corporate Angels". This program goes like this: There are several large fortune 500 companies who charter private jets from main cities all over the country to fly to other main cities each week. There are always spare seats on these flights and these companies have donated these seats to cancer patients who need to travel to other cities to receive treatment. It was too late for us to speak to someone about that program today but we should have answers from them on Monday as to whether or not he qualifies to be part of the program, or if it even extends to Salt Lake City. This would allow Sean (and an adult companion.....i.e. me) to travel for free from Salt Lake City to New York for treatment and back. Dr. Feldman said that each cylce of treatment in the study is 4 weeks long and for the first 2 cycles, Sean would need to be in New York once every 2 weeks for testing, but after that he would only need to go out once a month. This would go on for as long as the treatment worked for Sean and as long as Dr. Feldman wanted his regimine to last.

Sean has decided that going with a study will be the best option for him right now. This study in particular would be excellent in that there are very limited side effects, if any. He would regrow his hair, be slightly less fatigued, be rid of the pain that comes from the Gemzar/Taxol treatment he has been going through, and basically be able to feel a lot more like himself than he has for a while. Dr. Einhorn in Indiana is also conducting this same study but is not currently accepting patients for participation, which is why we are looking into going to see Dr. Feldman in New York, instead of Dr. Einhorn. There is also an additional secondary study that Dr. Feldman is doing on testicular cancer patients right now as well but it is not our first choice and we may consider it for Sean as a back-up plan.

I had a very good first impression from Dr. Feldman. He took at least 30 minutes out of his day to call me and explain to me what the study was for and about and go over Sean's case and answer whatever questions we had. (I had called his office to leave a message regarding our interest in the study probably 10 minutes before he called.)

We're not completely sure when we would go out to New York to start the trail, but guess that we could go during the last week of February into the first week in March. We'll look at our calendar pretty closely this weekend and decide on when we'd go so that on Monday we could make an appointment for Sean's consultation.

We are still hoping to hear from Dr. Chandramouli later tonight and inform him of the decision we've made and get his input but for now we haven't heard anything from him. If anything changes, we'll definitely let everyone know.

We have a lot going on in our life right now, which is apparent, but in many different areas too and we still need everyone's prayers. Please keep us in your thoughts and prayers over the next couple of weeks while we make arrangements to go to New York. We will continute to keep everyone updated via this blog and will try and post as much as we have the energy to do so. Thanks to everyone for all the love and support that we get. We love you all



Mel said...

You guys are awesome. Way to keep looking into treatments. New York and the treatment he will get sounds promising. I am so sorry for all this and hope that in the end it will be worth it! You guys deserve it! We will continue to pray for you! Love you guys!

Nick Smart said...

The clinical trial sounds very promising. Good luck with it.

Anonymous said...

Sean and Karen, We are so PROUD of your continued faith and the love that you share with eachother and that you continue sharing with everyone. We ALL Love You!!! We are also thankful to everyone that is praying and continues to help you. I KNOW your Parents are extremely PROUD OF YOU BOTH TOO!!! Love Always, Aunt Laura, Grandpa Martella, Aunt Debbie, Aunt Dawn and the rest of our family

Anonymous said...

Sean and Karen, I haven't been able to be at church since the first of November due to my work schedule, but I always keep close tabs on you guys through the bulletin, blogs, etc. My heart breaks for the agonies you continue to experience with the ups and downs of this nasty stuff. Your strength throughout all of this is awe-inspiring. Keep up the good work. My prayers for you continue every day. All my love to you. Wanda