This is a difficult blog post to write and share.
On February 23rd, I underwent CT scans of my chest, abdomen, and pelvis, as scheduled. Compared with my previous scans in late January 2015, the new scans showed mild further progression of the many bone lesions I have been dealing with now for nearly two years. The chest CT scan also showed a small (0.5 cm) lesion in the right lower lobe that is worrisome for a possible lung metastasis. This was obviously disappointing to see.
On March 3rd, I returned to the University of Pittsburgh Hillman Cancer Center for a follow-up consultation with Dr. Tawbi, the wonderful oncologist who I originally met on February 3rd. We reviewed everything in great detail. There are three basic treatment paths I could pursue at this point.
The first path would involve treatment with one of the emerging immune-based therapies that have received so much promising attention in the oncology world over the past couple of years. These drugs are not FDA-approved for treatment of sarcoma. There is one trial that would be very relevant for me. Unfortunately, however, as it turns out I am not eligible to participate because I do not meet the trial eligibility requirements.
The second option would involve trying one of two “targeted” drugs that have shown activity against cancers that have a gene-mutation that was discovered in the genome sequencing assay performed on my tumor about a year ago. One of the drugs is available only in a Phase 1 clinical trial — which I am eligible for, but do not feel I can participate in because the logistics involved are overwhelming (for example, I would have to either move to Pittsburgh for two-three months, or travel there weekly for the first nine weeks — which I am just not strong enough to take on.) The second drug is available off-trial, and has shown promise for patients with the gene mutation I have.
The third approach would be to pursue more conventional chemotherapy treatments, of which I have already received 11 cycles of two different chemo regimens (after three months of a different targeted drug, in the spring of last year). The chemo drugs did show evidence of improvement … but were accompanied by very difficult side effects.
Dr. Tawbi, and several other specialists I have consulted, have encouraged me to go ahead try the targeted therapy that is available to me right now. Of course — as with any anti-cancer medication — there are very likely going to be more toxicities and side-effects. This is no small matter, because I continue to struggle mightily every day with severe bone pain, requiring very high doses of pain (and other) medications, and fatigue. I am also still healing from the achalasia surgery I underwent last month. In addition, even though this drug is targeted against my particular gene mutation, it is unclear how well it will work. Furthermore, taking this drug now (or any other anti-cancer drug, for that matter) will likely make me ineligible for a variety of potential clinical trials in the future, because it will be my fourth line of systemic treatment. Most clinical trials require that patients have only received three prior lines of systemic treatment.
I acknowledge that the past number of weeks have been qualitatively more difficult than perhaps at any other time in my journey so far. The pain and fatigue that I have been experiencing have reached a new level. The clinical data for any of the drugs available to me is also limited and uncertain. Enduring this level of pain while also trying to make a decision between several less than optimal treatment choices has been extremely hard. At times, I have questioned whether I even want to continue with treatment at all.
Nonetheless, after agonizing over these very difficult choices, I am inclined to go ahead and give this new targeted drug a chance. Despite the challenges, I feel compelled to continue to try to find a way — at the very least — to stop the progression of my cancer. This drug (that targets the genetic mutation I have) offers that chance, and even the possibility of a very meaningful response. But it is unlikely to be an easy path.
I will be meeting again with my local oncologist early next week, and expect to start the new treatment soon thereafter.
Meanwhile, I want to say “Thank You” again for your continued love, prayers, and good wishes. There is so much that Kristina and I have had to deal with in all of this. Walking the cancer journey consumes so much time and energy, and has been exhausting. This continues to make it extremely hard to stay in touch with family, friends, and colleagues more directly, which is very painful for me. It is a great blessing to be in touch through this blog, and to receive your expressions of love, encouragement, and support. Thank you again for reaching out, as you are able. It means a great deal to me.