Discomfort in chest and moving to Waterloo

Beginning around noon on Wednesday, March 24th my chest began to hurt slightly more than usual. The pain kept me from sleeping and continued through Thursday and into Friday morning. Upon contacting Dr. Milhem at the U of I, I was asked to come in right away for a new CT scan of my chest to ensure that a blood clot hadn't developed during my plane travel.

Fortunately, there are no blood clots. The pain is caused by the tumor in my chest having progressed into the cartilage between my sternum and my ribs. So, each time I breath deep or move my upper body at all, there's a spasm in my chest that's rather painful. I am now on morphine to keep me comfortable until I'm able to return to Boston.

Moving to Waterloo - I will be moving back to Waterloo until I beat this thing. John Deere was kind enough to allow me to work from the Waterloo Tractor Works facility. This will allow me to remain close to my family while I receive my treatments and will very much help the logistics portion of treatment.

Update from Boston:
On Friday, I also received a call from Boston letting me know that their lab confirmed my diagnosis (no surprise but it is a requirement for the clinical trial). The business department at Dana-Farber is now doing all of the behind-the-scenes work to ensure that my United Healthcare insurance covers a Phase 1 clinical trial.

First visit to Dana-Farber

2pm today:
Met with Dr. Burtynski and others. Today was basically a consultation with Dr. Butrynski and a session to review what will be involved with the treatments in Boston. When treatments begin, they will have to be administered in Boston because of all the regulations regarding clinical trials. My first treatment should begin in approximately 2 weeks with treatments to follow every two weeks for two months after that. Then the visits to Boston should be once a month after that.

The technical stuff:
The drug is PF-02341066 and has seen some success in patients with certain sarcomas of the lungs.

Next Step:
I will be returning to Waterloo late tomorrow (24th) and returning to work until I hear from Dana-Farber. The exact date of the first treatment will be ironed out within the next week with the first treatment to begin in about 2 weeks. So... hurry up and wait.

Heading to Boston

I will be heading to Dana-Farber in Boston on Monday, March 22. I have an appointment with Dr. Butrynski at 2pm on Tuesday. This is basically a consult. They will let me know what the clinical trial is all about and how much travel will be involved. We hope to begin my treatment with this visit but we'll see.

Dr. Butrynski specializes in rare forms of cancer and has experience with clear cell sarcoma in particular.

Right now, I feel fantastic most days as long as I get plenty of rest and don't try to over do it with anything.

Next Step: Visit bean-town and begin treatment of some kind.

Meanwhile: I cannot say enough how very appreciative I am of all of the support, from family and friends to co-workers. It has been truly overwhelming and very humbling. Thank you all, you will never know how much it means to me.

News from the U of I Hospitals and Clinics

First and foremost, I am still going to beat this thing. No matter what the physicians say.

Friday, March 12th:
Met with Dr. Milhem.

• Troubling news: Per Dr. Milhem, due to level of progression of this particular type of cancer, we will not be able to cure me of this desease. At this point, it will be terminal but we do not know when. Current estimations (very vague) are 3-4 years. Dr. Milhem also asked if I would be open to options other than chemotherapy as it is only known to slow this cancer about 5% of the time.
• MRI of my brain: preliminary results indicate no spreading of the cancer into my brain.
• Good news: Dr. Milhem is aware of a clinical trial in Boston, MA at the Dana-Farber Cancer Institute that may have success rates in slowing this type of cancer in the 20-30% range.
• In addition to this trial, there are 1-2 other clinical trials that may be in my future to see what we can do.
• In general: my body's immune system needs to wake up. Apparently, my immune system can fight this thing, IF it begins to recognize it as dangerous. For now, the cancer is fooling my immune system into thinking that it is posing no threat.

Hope* In 2% of clear cell sarcoma cases, the body suddenly and inexplicably "wake's up" and begins fighting back and a remission of the cancer takes place. I fully intend to add to this 2% and be another medical miracle.

For now, please keep me in your thoughts and prayers.

Next Step: Dr. Milhem is in communication with Dana-Farber to get the clinical trial treatment started ASAP. We hope this starts early next week. Until then... I'm enjoying my weekend and my time with Ashley.

Thank you all.

Dr. Scott Okuno from Mayo Clinic will be directing my care (what drugs I get, how much and how often). Dr. Mohammed Milhem at the Univeristy of Iowa Hospitals and Clinics will be the on-site set of eyes and ears and will work in colaboration with Mayo.

Next Step: I have an initial consultation with Dr. Milhem on Friday, March 12th at 10am. Hopefully my biopsy can be completed at that time as well and we will discuss chemotherapy treatment initiation at that time.

On February 11th, 2010, I was diagnosed with 'clear cell sarcoma' a type of very rare soft tissue cancer. On March 4th, Mayo Medical Clinic confirmed the diagnosis. This is a summary of what has happened so far. I hope it is informative without being overwhelming.

Late November 2009:
I noticed a small lump on my left heel. Nothing major. Consistent with something you would see from wearing a bad pair of shoes.

December 2009:
Gave it a few weeks hoping I had bumped it without noticing or that it was some other small thing. Around Christmas time it had not gone away and had grown significantly.

January 2010:
An additional lump had developed in my upper left thigh consistent with an inflamed lymph node (I thought).
Antibiotics were prescribed and additional testing was ordered.
Results: lump in thigh was said to be a blood clot (later known to be incorrect).

February 2010:

• 9th - surgery to excise the tissue from my left foot.
• 11th - Clear Cell Sarcoma Diagnosis
• 26th - First visit to Mayo Clinic

March 2010:

• 3rd - PET/CT testing at Mayo Clinic
• 4th - Informed that the cancer has spread to lymph nodes in my upper left leg and hip as well as my sternum.
• 5th - Consultation with Dr. Okuno - a medical oncologist @ Mayo Clinic. Recommendations of aggressive chemotherapy treatment.