Pull No Punches - September 2, 2010

Pete's father drove us into the city to meet with Dr R this morning. I usually am the fretful mom and Pete often gets annoyed when I ask "did you remember...?" when we're about to leave for an appointment, so this morning I didn't ask any annoying questions. Too bad I didn't. We were about 1/3 of the way when I commented that I hoped the slides from MSKCC had been sent to Dr R. That prompted Pete to grab his backpack and find that he had apparently not packed the slides of his brain tumor that he had picked up from MMC the other day. I just crossed my fingers that Sloan-Kettering would come through.

We were early for the appointment. Pete took the CDs of his 3 scans to the radiology department to be uploaded into their system so Dr R could look at them in his office. Within minutes he was called in to have his blood drawn, and shortly after that was completed we were in Dr R's office. The slides from MSKCC had not arrived, so Dr R pulled up the new MRI scans and pointed out and explained what he saw on these latest tests.

There are 2 people who work under Dr R who seem to be his left and right hands. "A" is his physician assistant and "L" is his office assistant. We were about 30 minutes into the appointment when L announced that the slides had just arrived, promptly brought them in and placed the package in front of him. He immediately took out the slides and began viewing them through the microscope on his desk. After he found the giant cells that were not apparent in the slides from the core needle biopsy and reading the full report included in the package he said that he agreed with the diagnosis presented by MSKCC of MFH (Malignant Fibrous Histiocytoma) though he identified it more specifically according to the World Health Organization guidelines as a "high grade undifferentiated pleomorphic sarcoma" (HGUPS). He also said that after viewing the slides and reading that the primary tumor was subcutaneous, he agreed with Sloan-Kettering's assessment that post-surgical radiation and/or chemo were not indicated. Everything pointed to this sarcoma as being one that is not expected to metastasize.

He outlined the plan of attack, an ambitious approach that would begin with an attempt to reverse, or at the very least, halt the growth of the tumors using chemo. He discussed the pros and cons of using the single agent Ifosfamide vs a "chemo cocktail" of Ifosfamide and Platinol. His final decision was to begin with the Ifosfomide alone, holding the Platinol as a possible addition later.

After allowing an appropriate period (2-3 weeks), scans would be repeated to assess effectiveness. Depending on response, the next step would be IMRT radiation to further shrink the tumors, particularly the large one in his lung and the two in his legs. Surgery would be the final step in this three pronged assault.

Had it not been for the impending Labor Day holiday weekend, during which the hospital would be closed, combined with the amount of time since Pete's last chemo infusion of the drug DTIC and its known blood count nadir, he probably would have begun the program today. Dr R decided, because of his concerns about these two factors, that it would be prudent to wait and scheduled Pete to begin the infusion 7:30 AM Tuesday, September 7.

As he described it, Pete will be hooked to a pump that will continuously infuse high-dose Ifosfomide over a period of a week to ten days, but it may turn into several weeks. During that time he will need to go to the hospital frequently for hydration, blood tests and to have the chemo solution refilled. He recommended that we consider staying in or close to the city for easier access to the hospital as this regimen is quite rigorous and dehydration is a major concern that can quickly turn life-threatening. More than once he stressed that this is a very aggressive and potentially dangerous treatment, necessitated by what we are learning is apparently the highly kinetic and atypical nature of Pete's cancer.

After we got home we made reservations at an extended stay hotel near Newark Airport about 15 miles from the hospital, a trip that is one exit up the NJ Tpk, through the Holland Tunnel and traverses 2 miles of lower Manhattan streets.

Dr R strikes me as an extremely caring, accomplished and dedicated physician who treats his patients with respect and humanity. The closing of St. Vincents Cancer Center clearly saddened him because that facility was open 24/7, something he feels very strongly is important for proper care of cancer patients. His current association with Beth Israel will end soon because he does not feel comfortable with their practice of limited daytime hours and being closed on weekends.  He will be moving to NYU as of October 1, where the hours, though not as generous as St. Vincent's, are more accommodating to patients than those at Beth Israel.

I appreciate that Dr R pulls no punches and tells it like it is. One of the things he said in the course of the appointment, though, gave me pause; something about Pete having "nine toes in the grave, so we have to grab the tenth toe and pull him back", a metaphor that I'm still trying to accurately interpret. I'm going with the fact that there are a whole lot more body parts and it's like getting your toes wet first, before you slowly wade deeper and eventually get up the nerve to go swimming.