These results struck conversation between the various departments of my oncology team and everyone agreed that systemic control of the disease using medicine (chemo) is still the best path to manage the disease. Surgery would delay the chemotherapy treatment while we'd have to wait for my body to heal and radiation could complicate the later surgical resection of the disease.
The conversation turns to a discussion of which chemotherapy regime to continue. The current regime of AIM (adriamycin-ifosfamide-mesna) has served me well. It's most notably gotten me out of a wheelchair; however the AIM regime has done little to actually shrink the tumors and the various cancer markers show that the effectiveness of the drug is starting to plateau. Additionally, the AIM regime is no walk in the park and is very toxic to the body. I could only get two more rounds of AIM before the drug starts to adversely effect my heart.
As a second line defense there's a new drug under clinical trial called Yondelis which has shown to be very promising at combating STS (soft tissue sarcomas) and even more promising for my M/LS (myxoid liposarcoma). It's an experimental drug in the US but approved in more than 150 countries worldwide where it's probably even used as a first line defense. Yondelis is also about a 1/10th the toxicity of AIM and currently there is no cap on how many times I could receive the treatment. We're given the consent form for the clinical trial and are sent home to make a decision between continuing AIM or starting Yondelis.
It must be understood that Tuesday (the next day) I was scheduled to go into the hospital to start my 5th round of AIM. So a decision had to be made fast.
The next three days began an emotional roller coaster, researching this new clinical trial and deciding which treatment to continue. After a lot of research and discussion we were leaning towards Yondelis, ditching the 60 year old chemotherapy drugs for the newer modern medicine, swinging to the fences to find a cure. (*** If you were wondering where the sarcoma donation dollars are spend, Dana Farber has been instrumental in brining Yondelis to the US and this is just one small piece to the other research and clinical trials they're doing.)
Tuesday morning the hospital called and informed us that I wouldn't be able to start my scheduled AIM treatment until later in the week, possibly Friday or Saturday. We took this as a good sign as it allowed us a little more time to get more opinions and to make a final decision. Meanwhile we started the screening process to enter the Yondelis clinical trial.
Tuesday evening I received a call from my doctor stating that I wasn't eligible for the clinical trial due to "no progression of the tumor site." Additionally we were told that we would have to continue the AIM regiment as an outpatient instead of inpatient due to an unforeseen influx of patients to the hospital. These two statement weren't taken lightly. 1.) We were leaning towards this new medicine hoping and thinking that it could have a chance to kill the tumor. 2.) AIM is hard enough to do inpatient; outpatient would require dragging myself back and forth to the hospital for three days.
What were we to do? We really only had once choice now: continue AIM as an outpatient. On the bright side I'd get to sleep in my bed every night without being woken up every four hours, and I wouldn't have to be subjected to hospital food for three days. I tried to convince myself that outpatient may have some serious advantages. Additionally I could start my treatment Wednesday (tomorrow) instead of waiting till the weekend.
Wednesday morning we woke up, packed a day bag to take to the hospital and headed over to my doctor's office to begin Round 5 of AIM as an outpatient. As an outpatient the first thing you have to do is to meet with your doctor to write the orders and make sure your blood counts have bounced back high enough to handle the next round of chemo. At the meeting, after talking through the past couple day's roller coaster ride, we asked to see the final reads on the MRI scans from Monday (it takes up to 24 hours to get a final radiology read on a scan so a portion of the reports reviewed at Monday's meeting with the oncology team were only preliminary reads).
And there we found it: "Progression of osseous metastatic involvement." Before you get the wrong impression, it's really not that bad and our second opinion said that the scan might have been slightly over-read. Again, not the news you ever want to hear but just enough bad news to get me in the clinical trial, which we really do feel has a good chance at killing this disease.
We left the hospital and spent that and the next day (Thursday) celebrating our small win. Yondelis starts on tomorrow which works well because I would have needed to wait until Friday anyway for the AIM to washout; so no time wasted!