His BMT doctor thought it would be a good idea to see if his oncologist at Cleveland, who originally ran the DNA testing that discovered the IDH2 gene mutation, might still have a sample left of his marrow. So, she recommended calling him to see what he suggested. This doctor was Todd's main oncologist/hematologist prior to transplant. We got to talk to him shortly afterwards. He gave us recommendations of other doctors in the field that he trusted because of their experience. One was at Northwestern in Chicago where they are conducting the trial study; another was at MD Anderson in Houston, Texas, also doing the study; and a third was a former fellow and student who now works at Memorial Sloan Kettering. He knew of Dr. Stein and informed us that he and any other doctors assigned as the primary investigators of the study were being paid by the drug company Agios who is conducting the studies. (This is called full disclosure). We knew this, but in my search without a recommendation in Nashville, I called Dr. Stein's office anyway, because at least he was familiar with the drug and its results. He told us that Dr. Stein was young and that we may want to consider a doctor who has been in the field longer, but that we should go wherever we could get in first! Just because we sent records did not obligate to keep an appointment. He also confirmed that it would likely be at least a month or two before the drug study would be at the Cleveland Clinic.
When we asked about the Todd's former bone marrow samples, he said he had them in a freezer, but that whoever does the study would probably want a recent result. He recommended our local oncologist collect a sample of peripheral blood cells to send to special lab in California to get the DNA IDH2 gene mutation results from that. They took this sample last Thursday and I called to follow-up that they sent it to the right lab. (Ugh...)
So, we started looking up names and phone numbers of places and doctors to call. First, we had to confirm with the insurance company that these doctors and hospitals were in-network. We have learned that routine blood work and other tests will not be paid for by the drug company during the study, so it is important to make sure you have coverage for the incidentals. All three recommended doctors were in-network.
Next, I called the doctor at Northwestern in Chicago since it was closest. Unfortunately, the doctor would not be able to see us until April 1, 2015, which I thought was too far out. Then, we called MD Anderson, but before we could schedule anything, they had to get our insurance information and process a request for coverage. Since then, we have been playing phone tag, with no appointment scheduled yet. I tried to call them again today, but they refused to talk to me, stating that they had to talk to Todd first to get permission to talk to me. We went round and round for ten minutes; I tried to hand the phone to Todd during his blood transfusion, but we can't get a signal in his ATA room and of course, the call was lost. (I had been standing in the hallway). MD Anderson might be the #1 ranked cancer hospital or whatever, but I'm not impressed with their scheduling and staff! Who would even want to go there after all that?
While all of these calls were going on, Dr. Stein's office called and asked for a special request that Todd's pathology slides be sent to him by an express delivery service. I told her we didn't get the results back from the biopsy confirming the DNA, but she assured us that Dr. Stein could always perform a bone marrow biopsy at the appointment. So, I called both the local oncologist's office and Todd's BMT doctor in Cleveland to get the necessary records sent to MD Anderson and the slides to Dr. Stein.
The next day, I called the Corporate Angel Network about arranging a flight to New York for the appointment on Monday, March 23, 2015 at Memorial Sloan Kettering with Dr. Stein. They were able to take down all of our information and get Todd registered for a flight. They told us that they could NOT guarantee us a flight for that day, so that we would need to have a "back-up plan." She asked us what our back-up plan was, and I said driving I guess! We told her we could return the same day, but she said most flights leave in the mornings, so that means we will have to get a hotel room for the night. Since then, we talked to our pastor when he came to the house to visit, and he advised us NOT to drive into New York City. That it was extremely difficult and parking too cost prohibitive. Unfortunately, buying two last-minute plane tickets will also be cost prohibitive.
The Corporate Angel Network is supposed to notify us 24-48 hours ahead of time if they were able to secure a flight for us. I need to start working on a "back-up plan." I can call the other flying services for cancer patients and/or our pastor said he knew someone who was a pilot who may be available. Today, our local oncologist told us that some airlines are willing to sell discounted airfares to cancer patients for appointments with some kind of doctor's note. We could try this or just cough up the money (what's a little more debt?). If none of that works, we hope to have a second appointment secured somewhere else. (Looks like it won't be MD Anderson). I'm thinking about calling back to Northwestern in Chicago and seeing someone else or just taking the April 1 appointment if it is still available. At this point, I am going to do whatever it takes to get him in somewhere else! And if we aren't happy with the opinion of the doctor we see next, then we will keep going until we are.
Todd's counts were not good last Thursday, March 12, but he didn't need any transfusions that day because his hemoglobin was at 8.1. We would normally feel happy about this news, but not that day. Todd had already felt run down and not getting a transfusion then meant having no energy until they could get blood work again on Monday, March 16. His platelets were good, but his ANCs and white counts were "non-existent." The nurse had me a bit scared and went to talk to the doctor about having his Hickman catheter removed (because they can be a magnet for infections), but we did not agree with this. His Hickman looked good and he wasn't having any problems with it. It makes transfusions and blood work so much easier on him that having to poke his arm which takes weeks to heal. They did caution us though to take his temperature often throughout the day. They told us that the guidelines for fevers had changed from calling with a temperature of 101.4 or higher to 99.5 or higher! This also seemed overkill, because he had been running a low grade fever off and on. We understand the risk of infection, but felt that running him to the hospital for a low grade fever only exposed him to more infections there than at home. So, throughout the weekend, we took his temperature about three times per day. If his fever went above 99.5 we waited 30 minutes and took it again. If it went up or stayed up then we agreed we would call, but we didn't have to. His fever did get up to 100 but only when he had been sleeping in the warm bed. Once he got up, it went back down to under 99 degrees.
We were due to see the doctor and have his blood work done this morning, Monday, March 16, 2015. His hemoglobin was at 7.3 which was low enough to warrant a transfusion (<8.0). His platelets jumped up to 70,000! But, his whites were still barely on the radar at .2.
Here we sit, once again in the Advanced Treatment Area (ATA) of Miami Valley Hospital getting his two units of blood. I pray it will energize him for several days.
For some reason, he is still scheduled to return to the Cleveland Clinic for treatment and to see his bone marrow transplant doctor this Friday, March 20, 2015. I guess it is part of his monthly post-transplant check-up, but I hardly see the point, except that it will give us the opportunity to talk to his BMT doctor face-to-face and to get his breathing treatment of Pentamidine (anti-fungal) to prevent any lung infections or pneumonia.
Post script. The blood work taken last Thirsday confirmed that Todd has The IDH2 Gene mutation. So we are good for the study! Now we need to pray for the airfare or positive response from Corporate Angel Network
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