Back we go to the regular oncologist. We weren't sure just what HE might have expected from the second opinion, but it does seem as if an ABMT was not what he had in mind. However he gets behind the idea and tells us that he is very familiar with it and that he worked with some doctors at Emory that did them all the time. Jackie's doctor at this point turns the research over to us. He gets me a list of the names of doctors and facilities around the U.S. that do ABMTs for breast cancer and tells me to start calling around and find out what's going on throughout the country.
Rule #32: It's often hard to get doctors to talk to non-doctors.
In calling around the country, I ran into this problem. A number of the doctors' assistants wouldn't let me talk to the doctors. They told me to have my doctor call their doctor. I knew that wasn't going to work -- our doctor had already left it up to me. However, I did reach a couple of doctors directly based on the numbers our doctor had given us. Talking to them was frightening.
'Recurrent breast cancer is 100% fatal.' What do you say when a doctor says this to you. You want to say, "Are you sure?" But he's not kidding, he believes this and he lives and breathes this stuff -- he's in a university hospital, he's in the know. After the shock wears off, you start asking about what you called about -- ABMT. He says, "It's the only thing I think has any possibility of a cure." Of course he says it -- it's what he's working on, it's his specialty. In 1500, if you'd asked the local surgeon if blood letting was a great idea, he would have said yes. However, I shouldn't be too hard on these men and women who are indeed working very hard to try and heal people. A number of the doctors that we met were doing it because they had lost a loved one to cancer at some point in their life, and had dedicated themselves to doing everything they could to defeat cancer. It just doesn't mean they will.
Another doctor allowed that recurrent breast cancer wasn't always uniformly fatal. Maybe one in a hundred -- or was it one in a thousand might have a spontaneous remission and recover.
When you are talking life and death, ninety-nine percent and one hundred percent seem very much like the same thing. This was all pretty scary stuff to us, and it made us all the more determined to find out all we could and to pursue it. Since I was the one talking on the phone, and since Jackie wasn't getting to hear much, we decided to see how we could find out more first hand. Since Jackie's doctor had some involvement at Emory with their program, and even though he was somewhat skeptical of using them, we decided that for information we might as well look in our own backyard. Jackie's doctor arranged for us to have an appointment with an ABMT doctor at Emory, and the insurance people agreed to pay for the consultation.
By now I had the process of an ABMT down. What it consists of is harvesting the patients bone marrow. They do this by drilling into the hip in a few places and extracting the marrow. This is tested for cancer cells and if it is ok it is frozen. Next they get you in the hospital and give you a port. Then they give you extremely high doses of chemo or maybe high dose whole body radiation. These doses are high enough to kill off all of your bone marrow and lots of your stomach lining, and cause lots of mouth ulcers. They wait a couple of days and give you your marrow back by transfusion. Then you wait. During this time the white blood cells, the red blood cells, and the platelets in your body die off, since your marrow has died and therefore can't make more. As they gave you back only a small fraction of your marrow, it takes a considerable time for it to grow back and start making these cells. The risk here is that you die of infection, bleed to death from a bruise since you can't clot, or die from lack of red blood cells in the interim.
To combat this they put you in isolation for the time that your counts are low, since you can't transfuse white blood cells. They get you to line up all your friends for platelet donations because they say you need lots of them, and they transfuse from the blood bank for red blood cells. The other thing they do is feed you intravenously, since you don't have much of a stomach lining anymore. At any rate they said the whole thing took six or seven weeks and cost about $150,000. And by the way, you would still feel like crud for a long time after you got home.