I am likely starting Cedir trial soon, as in next week is my last day to decide (unless this new scan extends my eligibility) I have reservations and want to wait another few months to start but am not sure that would be wise. Will look at newest scan today with radiologist and onc and this may help decide.
Here is the email I sent out to family for update, nothing in it that I haven't posted here I don't think:
Sorry for hasty post. So much to do before we leave to DC...Take care, all my friends and supporters and fellow cancer soldiers and their supporters. I hope to have time to talk soon.This is the official update I've officially been putting off for as long as officially possible.
I'd like to restate my treatment path thus far in brief pseudo-clinical terms:
Sept 2012, primary tumor removed, diagnosed ASPS. "Staging" scans performed--Thoracic CT, PET, Brain MRI. Sept 2012, many suspicious nodules visible on the CT scan in my lungs. VATS Surgical resection of a group of three sub-centimeter nodule reveals pathology of ASPS in lungs--extent of cancer is recognized as Stage IV. Sarcoma is a rare enough cancer that little research exists on most of the even rarer subtypes, including ASPS. Our first oncologist, Dr Myron (who we no longer are in communication with--no one likes their first oncologist I don't think) wrote a prescription for Sutent, a TKI class drug used in Renal Cell Carcinoma. He also identified a Clinical Trial at the NIH/NCI for a new drug (also a TKI class) called Cediranib. Astra Zeneca created it and for whatever reason discontinued it and gifted it to the NIH, from what I understand. We traveled to Bethesda and met the researchers who lifted quite a burden, just knowing that something existed that might help me one day. I sent them every new CT scan we did, and my cancer was growing so slowly that I DID NOT QUALIFY TO BEGIN THE CEDIRANIB TRIAL. Research and discussion with doctors at NIH and other medical facilities also revealed to us that one of the few chances of complete cure is to resect all the cancer. No American doctor we spoke with felt able to resect all of the nodules visible on the CT scans. Jan 2012, after corresponding with Dr Rolle in Germany who uses a technique available in the UK, Japan, Germany, S Korea, along with a host of other First-World Countries (except the US) and consulting with Dr Zwischberger (spellling?) at U of Kentucky (who had been trying to start a trial to approve said technique for US practice, but failed due to lack of sponsorship from the Industry, etc) we presented in Germany. Dr. Rolle resected 30+ tumors FROM MY LEFT LUNG using this techinque, and used a different technique to remove an additional 30+ tiny (<1 mm) invisible "tumor seeds" FROM MY LEFT LUNG that he was able to palpitate (using his sense of feel to squeeze the lung tissue).
After several weeks of recovery in Coswig hospital, then another week staying at Meg's cousin's house in Munich, we returned to the States, continued to send scans, until Dr Rolle accepted us back for OPERATION ON THE RIGHT LUNG. By this time it was evident that there were NEW NEW NODULES APPEARING ON THE ALREADY OPERATED (LEFT) LUNG. Dr Rolle stated that this surgery would be of a palliative intent--in hopes of reducing the tumor burden AND slowing the cancer's progress. Similar results were obtained during this surgery, however this time the resection was intentionally incomplete in order to balance lung preservation with reduction of tumor burden. In this respect it was a smashing success--I am still able to stand on Fire Brigade at work! However, we were now aware that my disease appears to be "widely disseminated," and the RIGHT LUNG operation was intended to reduce tumor burden instead of cure my disease as we had set out to do in the beginning.
Since that time, we have been observing a very slow but very steady growth of these new tumors in both lungs, along with the appearance of new tiny nodules suspected to be more tiny tumors.
Currently, I HAVE BEEN APPROVED FOR THE CEDIRANIB TRIAL AT NIH/NCI in Bethesda, MD and have flights to go and talk about beginning the trial next week. This trial is very promising considering the rarity of my disease. It has shown EXCELLENT response in patients who are able to tolerate it. Others do not respond despite tolerance.
If this TKI shows benefit, it will shrink some of my larger tumors at best or at least stop them from growing. At worst, it has no result. Sadly, this stability is nearly always temporary. I don't have stats on the "normal" time span that it usually works, but it could be months or years.
Unfortunately, sometimes when the cancer figures out "a way around" the drug and the TKI no longer benefits me, I will be forced to discontinue the trial. I am talking with all of my doctors about formulating a plan for when the trial no longer benefits me (Let's all hope that it shows benefit indefinitely, or long enough to find a real cure for this cancer, and then I can come visit everyone in awesome spirits!), but we are definitely not going to "wait and hope" in this case and will be as ready as we can be if/when this happens.
AS I SAID BEFORE, I HAVE SEVERAL IDEAS FOR IF/WHEN THE TRIAL NO LONGER BENEFITS ME AND WE WILL BE READY TO FACE THIS SITUATION IF/WHEN IT COMES. I am still working, I feel great, my breathing is easy and painless, the surgery is damn near 100% healed up, It's time to hit this cancer with something that lets it know it's not welcome here (I just wish it wasn't so oblivious and rude sometimes, I've already had to cut it up, my body tried to drown it last December with pneumonia, now I'm going to have to poison it. Maybe I should nick name it Rasputin--BUT IN THE END EVEN THAT CRAZY BASTERD DIED AND SO WILL MY CANCER!)
Lastly, I have taken a scan on Tuesday to observe the results of my recent change in diet, my immune system boost, and my Intravenous vitamin C treatments. If this scan shows significant growth, it will be an easy decision to start the trial. If it shows stability, I am considering delaying starting this trial. I am prepared to make either decision, based on the results of the scan (which we will know tomorrow) and on the advice of my oncologists.
I will update next week with my decision.
--
҉ Josh
, and keep in touch as you are able.