Live from Philips 21 House

Again, delaying my chemotherapy has proved to be greatly beneficial in allowing us to further evaluate the source of my new pains now persisting in excess of three weeks: the lower back pain / right leg pain down the back of my non-sarcoma leg, left chest cavity pain and left scapula "rear shoulder blade" pain.

In the absence of being able to continue with chemotherapy what's also been interesting is that the described pains my medical oncologists told me to sit on and watch carefully, the radiation oncologists (radiation doctors) and interventional radiologists (surgeons) were able to directly associate to my complaints. The lesions found at C3 correlated with my rear shoulder blade pain, the T12 lesions correlated with the chest cavity pain and the persistent L5 lesions correlated with the lower back pain.

We struggled between input from the surgeon's and radiologist's with a final treatment plan weighted towards the idea of receiving radiation. Initially we mainly leaned towards a chemotherapy medicine approach to my disease as it was assumed to be in our best interest to preserve the functional blood cell producing bone marrow in my spine (typically destroyed by radiation); however, with confirmed bone marrow replacement from the updated set of MRI scans, a radiolgical approach now seems to make sense as the bone marrow that would have been "destroyed" by radiation isn't effective anyway.

In revisiting these treatments plans I found the statistical numbers to be pretty staggering. Surgery, being the mainstay in treating sarcomas, has pretty high "cure rates" by eliminating the disease with good margins if it hadn't already mestastised throughout my body. Chemotherapy interestingly enough has relatively low success rates despite its widespread use: first line chemo is only about 40% effective and second line chemo is less than 30% effective. However, radiation is almost 80-90% effective at killing tumors, though radiation is also equally effective at killing healthy cells.

And so last Friday I received my first dose out of 10 doses of radiation to occur over the next two weeks. I've been in significant pain and my right leg pain (previously the most debilitating) has progressed into more of a lower back pain onset by weight bearing activities like walking, standing, etc. I'm still in the hospital though they moved me up to the penthouse suite where I started my initial rounds of chemotherapy back in June, so need-less-to-say I am more comfortable and focusing more on my recovery instead of merely getting discharged from the hospital.

As always I'm really hoping for some closure and maybe some answers to some of my more difficult sores / pains. We've assembled a great team of pain specialists, radiation oncologists and interventional radiologist that are helping us out through this most recent obstacle and are looking at some interesting treatment plans. As we're learning, the lower back pain seems to be more mechanically based so we're talking to the interventional radiologist about stabilizing the L5 spine lesions with kyphoplasty or vertebroplasty, finally addressing the root of the pain instead of targeting the symptoms. As far as chemotherapy goes, if we can kill off these targeted areas on my spine then we may be able to return to yondelis which seemed to have some effect on stabilizing lesions in my lung, the primary sarcoma in my leg and the lower spinal lesions, not to mention carrying those nice overall survival statistics with myxoid liposarcoma.

We're still taking everyday one day at a time and we appreciate everyone who has reached out to us over the past couple of weeks. Please keep the emails, calls and little surprises coming.