Sunday, January 30, 2011

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.

Friday, January 28, 2011

Update from the ER

My chemo got delayed this week due to low blood counts; however, the delay allowed us to further investigate some of these other pains and issues I was experiencing. Monday afternoon I got plain XRAYs of my lumbar spine and Tuesday evening I sat in the MRI machine for another couple hours to get complete MRI studies of my lumbar and sacral spine.

The following morning, Wednesday, I returned to my oncologist for blood work to see if I would be able to start my chemo today, though highly unlikely from what everyone was telling me... And they were right! No chemo Wednesday either but I was able to learn the results of my XRAYs / MRI scans: the XRAYs were pretty uneventful; however the MRI scans showed some new lesions in the T-Spine, prompting the need for further MRI studies.

Meanwhile my pain increased and Thursday morning I was admitted to the emergency room for pain control. Sitting, standing, walking and lying down have all become difficult, making my new MRI studies painful but my friend dilaudid came to the rescue and we completed the MRIs last night.

I'm not really sure where we stand now with regards to my treatment plan. Today we're meeting with radiation oncologists to see if radiation can decrease some of these pains and then we're going to meet with the neuro-interventional radiologists to see if there might be a minimally invasive / minimal recovery procedure that would allow me to get back on track with my chemo schedule.

We're also not sure about where we sit with Yondelis anymore and we should be learning about this today too. Because of "progression" / new lesions shown in my T-Spine radiography studies we may be done with Yondelis, which is obviously disconcerting because it's the best drug for my disease today but we'll find out later.

Sunday, January 23, 2011

OS = Overall Survival

On 1/11 I had actually started to write a post, "It's really amazing at how I can feel..." The rest of that sentence was supposed to read: "so good after feeling so bad for a week." I was referring to the malaise from another round of chemo and then how 5-7 days later it's completely gone, back to normal. I never did finish that post because truthfully I was never really feeling "so good."

For the past three weeks I've been struggling with a soreness (like a knot) in my right shoulder blade and an aching pain down my right leg (non-sarcoma leg). I powered through the three weeks and managed to fit in a nice adventure to Akron to visit my company's corporate headquarters. The trip was a great distraction from the pain and really made last week bearable.

As always when I haven't seen people in a while I was asked the question, "What's the prognosis?" The question sent me off researching again, though I should have known better. Here's what I found:

"the overall survival (OS) results are... supportive of clinically relevant activity with trabectedin (Yondelis): the median OS of 13.9 months [...is...] very favorable in the context of an expected 6-month survival range for a patient population of advanced/metastatic STS having progressed after anthracyclines and ifosfamide (Demetri 2009)."

To translate it says that had there not been Yondelis my median overall survival rate would have been 6 months; however, on Yondelis my median overall survival rate is 14 months.

This obviously made me sad for a couple days, after all it was just a week ago that I passed my 6-month anniversary from being diagnosed. And then to think I have less than a year left to live obviously scared the sh*t out of me. It took awhile to snap out of these thoughts but burying myself in work and spending good times with Autumn made them pass. I know numbers are just numbers and I know that this particular excerpt which I pasted above was not specifically on myxoid liposarcoma and trabectadin, which has a slightly better outcome, but I still got sad.

Michelle Beck and Blake Eltis came to visit at just the right time and we had a great weekend together. I still have the same persistent pains but I think we've figured out the right cocktail for comfort and tomorrow starts another round!

"Breathe in Hope, Breathe out Love"

Saturday, January 1, 2011

A New Year and a New Beginning

Good riddance to 2010 and welcome to a fresh start in 2011. It's been a tough year; five of family members were diagnosed with cancer: anal cancer, fallopian tube cancer, breast cancer, soft tissue cancer (mine) and my aunt's dog developed some kind of cancer in his leg. I'm pleased to report that we're all alive and fighting. We've all gone through rounds of chemotherapy and various other treatments and we all are here to tell our stories.

This past year was also filled with many great memories. Autumn and I learned what it really means to care for each other in sickness and health, what's truly important to us in life and what it means to have a great support system of friends and family. I can't thank everyone enough for all the caring and support you've all given myself and my family.

So here's a toast to a new year and a new beginning full of great memories with family and friends, healing and new discoveries.