Chase made another important step forward today, with the first application of his treatments!
We started off with a meeting at MD Anderson in the morning. As we suspected, they recommended the “traditional” treatment plan, starting with radiation and (depending upon how their pathology analysis comes back), they’ll probably recommend some type of chemotherapy as well. They didn’t receive the sample from St. Jude yet (expected by tomorrow), so we don’t have a second opinion on the pathology to evaluate. We’re hoping to get the second opinion by the end of the week and with their pathology report, they will provide a complete recommendation for the treatment plan.
The most pleasant surprise about the MDA meeting was that they weren’t too offended when we mentioned that we were investigating alternative therapies, including the Burzynski Clinic. Although they didn’t expressly recommend it, they couldn’t really provide any legitimate reasons why we shouldn’t pursue it. They indicated that although Burzynski had been reporting successful treatments for quite some time, they hadn’t seen any of his studies published for “peer review”. I happened to have a copy of his Phase II trial study on me, which had been published in Drugs R&D in 2003, and reported very high rates of “complete response” (total remission) and partial response (> 50% reduction), with the majority of participants falling into one of these categories and another 30% having stabilized. They thought these would certainly be very promising statistics if they were in fact for patients with this specific condition (which the report indicated). To that, they simply said they weren’t aware of the results and whether it had been subject to “peer review” (pretty remarkable, given that these practices are < ½ hour drive apart). They also wondered whether some of the reported results from the Burzynski studies were based upon “residual effects” from the radiation that patients had previously received – I didn’t bother rebutting this, but from reading the study, it was clear that the patients who underwent radiation were required to wait at least 8 weeks before starting on antineoplastins (probably to remove this specific potential argument).
Thus, with no glaring reasons not to proceed with the “alternative therapy”, we pressed on to the initial trial at the Burzynski Clinic in the afternoon. We spent about four hours going through the details of how the treatment is administered, since once we leave we’ll be responsible for managing the treatments, along with our local Pediatrician and Oncologist. During this time, Chase was given the initial very small dose and was monitored for any potential reaction to the antineoplastins. Fortunately, there were no issues and by the end of the day, his pump was programmed to continue to administer the treatment for the next day (6 more treatments, each administered every 4 hours with a timed interval) but at a very small dose. Meanwhile, we learned about the various potential failure modes of the pump, the procedure for changing the IV bags, monitoring the treatments, etc.
So far, so good. Chase was once again a great sport, although he’s starting to push this negotiating a bit far (he wouldn’t even get on the scale at MDA until Carol gave him a quarter). Then at the Burzynski Clinic, they had to access his port to begin the treatments by piercing a needle through his chest and hooking up the hose. He earned another couple bucks (milked it for what it was worth) and then went on playing cards with his sister, while we were undergoing training. By the time we left, he seemed already used to the fact that he’s got a hose, pump and bag attached to him and was carrying it around with him wherever he needed to go. We’re still concerned that he’ll wake up to head for the bathroom, forgetting it’s there, so Carol will be sleeping by his side to monitor him closely as soon as she hears him move. Hopefully after a few nights like this, it’ll be second hat to the little guy.
All in all, it was another successful day in our journey to get Chase on the road to recovery. We still have several “irons in the fire” in terms of identifying alternative therapies, in case his tumor doesn’t respond to this one, but this sure seems like the least “invasive” so far. We did get a return call from Dr. Friedman at Duke who is ready to provide a recommendation on an advanced trial plan, once we get another pathology report from his highest regarded source, Dr. Peter Berger out of Johns Hopkins (that will come after the MDA report is issued). We also got a return call from Cedars Sinai and they are ready to evaluate the possibility of using their new precision surgical approach that is also non-invasive (through the nostril) – they are reportedly the only practice in the country using this technology. We need to get them a copy of the latest films from the post-biopsy MRI and they will give us a response in a few days. In addition, we are also awaiting a response from Mass Gen in Boston on the results they’ve been getting with the Proton Beam radiotherapy for pediatric brainstem applications. They returned the call but need more info to provide an assessment. Finally, we are also in contact with a treatment center in the UK that has been developing alternative therapies as well and we are expecting to get some guidance / feedback soon.
Hopefully, we’ll have a good feeling about Chase’s response to the “non-conventional” therapy soon, before having to pursue other options. We remain very optimistic about this approach and we’re keeping the faith! Thanks again for supporting us with your prayers – we’re continuing to hold Chase in the light and seeing his immune system rise up (with the help of the anti-neoplastins) to rapidly fight off this tumor! We finally feel like this 1/3 of our overall wellness plan is beginning to get on track. With God’s help, we’ll begin to see the results soon…
With lots of love and gratitude,
John & Carol Sammut
Chase & Barbara Ann
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