Kristina and I had a busy and eventful week. I’m writing to give you a brief update.
We flew to Pittsburgh on Monday, February 2nd, and made it safe and sound despite a big storm in the Northeast that day. On Tuesday morning, February 3rd, we had a very meaningful consultation with Dr. Hussein Tawbi, the director of the sarcoma program at the University of Pittsburgh’s Hillman Cancer Center.
Dr. Tawbi was wonderful. He is an extremely bright, caring oncologist — and very knowledgable about and experienced in dealing with rare and challenging sarcomas like mine.
He had a lot to share. Of note, he carefully reviewed the results of a gene sequencing assay that was performed on my original tumor specimen about a year ago, which actually revealed three specific gene mutations. Dr. Tawbi feels strongly that one the of the three mutations in particular is a potentially viable candidate for treatment with one of two new “targeted therapy” drugs. One of these drugs is FDA-approved (although for a different kind of cancer than I have), but could nonetheless potentially work for me. The second drug is being studied in a clinical trial that is available in his program. He asked me to return to see him in a month, after undergoing another series of MRI and CT scans. Right now, I am very inclined to go.
Dr. Tawbi felt that — given how severely exhausted I am from my last cycles of chemotherapy — it would be reasonable for me to take this time as a break off treatment.
We returned home Tuesday evening, feeling very tired but glad that we had made the trip, and gratified to have Dr. Tawbi on our team.
Also of note, Dr. Tawbi recommended — as have several other of my doctors — that I go ahead with the surgical procedure mentioned in my last blog post, to try and relieve the difficult swallowing/achalasia symptoms I’ve been struggling with for many weeks, before proceeding with any further systemic cancer treatment. I’ve decided to go ahead with this procedure — called a “POEM” procedure (which stands for “Per-Oral Endoscopic Myotomy”) — this coming Monday, Feb 9th. This will be done by a terrific gastroenterologist at the University of Colorado, in Denver, Dr. Norio Fukami, who I saw for a consultation on January 22nd.
I admit that I am daunted about undergoing yet another surgery at this time, for a variety of reasons. First, I still feel quite weak and exhausted from the last cycles of chemotherapy. The procedure also requires general anesthesia, which I have found from significant personal experiences takes a toll on my system. There are also risks involved — as with any surgical procedure. I’m also not looking forward to a post-op recovery time that requires a liquid diet for a minimum of two before the surgery, and four days after the surgery — and it is unclear how long it will really take to fully heal from this and eat normally again. Nonetheless, I am convinced that this procedure is the best option I have available right now. And I feel certain it is important to try. I want to keep doing all I can to keep moving forward, and being able to get adequate nutrition is essential.
The surgery will happen on Monday morning, in Denver, and I will be kept in the hospital overnight. If all goes well, I’ll be discharged on Tuesday and return home to Boulder.
There is a lot more I could say about all that is going on — but these are the most pertinent details for now. I wanted you to have a sense of the highlights.
Thanks as always for your love and support…