What We're Working With

So, here's the latest.  We met with Dr. Mark Levis at Johns Hopkins.  He mentored our doctor, Dr. El-Shami, during his oncology fellowship for 4 years.  He was the one who favored a transplant at this stage, while Dr. El-Shami is unsure.  Because Dr. El-Shami respects and trusts Dr. Levis's opinion (and he's been consulting with him throughout my treatments), he sent us to consult with him. We made the trek to Baltimore.  Dr. Levis spent about an hour with us, telling us a little bit more about my disease, what a transplant entails, answering our questions and concerns.  We appreciated the time he spent...and left with our heads spinning.  It was emotionally exhausting.  It reminded me of the first time we met Dr. El-Shami.  We were overwhelmed as reality set in -- we were meeting with an oncologist, a doctor no one wants to add to their repretoire --, we found out  my diagnosis was still somewhat unsure, and I left with a bone marrow biopsy (a very pleasant procedure).  At least this time I didn't have a biopsy; just lots of blood drawn.  The gist of our conversation with Dr. Levis is that he believes this cannot be cured with chemo alone and, because I am a good candidate for a bone marrow transplant (age, health, likelihood of a perfect match with 5 siblings), that is what gives me the best chance of cure.  I asked him why he thinks we should and Dr. El-Shami doesn't.  He said experience.  I emailed him last week with a question about some genetic testing I knew had been done on my tumor (myeloid sarcoma) sample.  This was his response:

We use those genetics tests to classify the risk for patients with "typical" AML (i.e., AML with leukemia cells circulating in the blood, and coming out of the bone marrow).  In the literature available to us, there are too few cases of myeloid sarcoma where the genetic information is known to be able to predict how those changes influence the prognosis, so honestly even if we had the information on your tumor, I don't think it would help much.  The simple truth is that you have a very rare cancer, and we are forced to rely on our direct experience with these tumors.  I presented your case to our weekly leukemia meeting, with 6 other leukemia faculty.  Of the 7 of us, 6 were firmly in favor of transplant, while 1 was unsure.  This is not to say that you don't have a chance at a cure with just 2 more cycles of HiDAc and no transplant- its just that from our experience, patients with myeloid sacrcoma tend to relapse more readily than other AML patients, so we prefer to transplant them to maximize their chances.

We made an appointment to meet with Dr. El-Shami for the next week and he talked to us for about 45 minutes.  He showed us some data that he had used in presenting my case.  It represented a small sampling of people with AML, all older than me (the average age for AML is 60).  Not all had the tumor like I had.  Basically, it reiterated what we've been told over and over; I'm an unusual case.  Not unheard of, just rare.  As such, there's not a lot of literature to go off of in my treatments.  Dr. El-Shami said how incredible it was that I came through both the induction and consolidation chemo rounds relatively unscathed.  He said he could have a patient my age with my same numbers (cbc counts), feeling horribly sick and in the hospital with IV fluids and antibiotics.  He said I proved to be "one tough cookie".  I absolutely know it is from the many, many prayers offered in our behalf that I was able to tolerate such intense chemo so well.  That being said, he says it seems that my body could withstand the intensity of a bone marrow transplant, but he is not convinced it is necessary at this stage.  We respect his opinion, and we respect the experience and opinion of Dr. Levis.  Dr. El-Shami said he would also consult with Dr. Kantarjian at MD Anderson in Texas, which (as I looked up later) is the #1 cancer hospital in the country.  He is going to get back to us early this week with his opinion.

We do know that, either way, I am not finished after radiation (which I will start this week).  If we decide not to do a bone marrow transplant, I will do 2 more rounds of consolidation chemo (5 days of outpatient infusions, followed by blood checks twice a week and transfusions as needed).  As we gather information from all our doctors, we've also been to the temple, fasted, and are praying earnestly to seek Heavenly Father's guidance in making this decision.