We met with Dr. Westervelt this morning and he basically gave me two months to live, possibly three. I admit I was thinking it might be a little longer than that, but I also went into today knowing that AML is extremely aggressive and it probably wouldn't be a great prognosis. He did offer us one option, and referred to it as FLAG treatment with a "booster" of stem cells from my brother. They want to admit me on Monday. The drugs he mentioned were either ones I've had before or are similar in their structure to ones I've had before, and sounded very much to me like induction treatment, which you would do when a person first presents with the disease. One of the drugs works by targetting a specific molecule within the cancer cell that may not even apply to me. He said it has a very poor chance of putting me in remission, but it's a chance and could buy us some time. It also carries a pretty high mortality rate, and being familiar with the drugs (high dose Ara-C and idarubacin (I've had daunarubicin)) I am fully aware of what quality of life would look like for what would most likely become a six week stay in the hospital. I do not want to spend the next six weeks of my eight weeks of life going to hell and back once again, away from my family and especially my baby. I've pretty much concluded at this point that it's not an option I'm open to trying.
In the meantime, I also received a blood transfusion. My iron had dropped over a full point in the past week, regardless of the Aranesp shot. In retrospect, Aranesp should not be given to patients with active myeloid leukemia and from my understanding has just aided in feeding the cancer. The blood is always an energy boost. It's important to note that the 2-3 month outlook is with regular transfusions. It's not just going home and doing nothing. I expect things would progress much faster in that case.
My husband has been on the phone all day and we put a call into my primary oncologist, Dr. Perry. He is out of the office until Tuesday, but very graciously called us from his home tonight. He was not pleased with the information I was given today and asked if we had been informed of "Phase One." We aren't familiar yet with what this is, but he is researching this weekend for me and will call us on Monday. He sounded very hopeful. I am so thankful for my team of oncologists at MU, and trust their expertise, especially that of Dr. Perry and Dr. Doll, who both specialize in blood cancers. They just aren't the same as a tumor based cancer and I like knowing that their main focus is on what I have specifically. He's given us the ray of hope we so desperately needed today.
Another option we are considering is alternative treatment through a clinic in Scottsdale. At first this door was closed to us due to the fact that the treatments would most likely not be covered by insurance. We've had a few families contact us and basically tell us that they don't want money to be an issue. I have been amazed and incredibly blessed by their willingness to share what God has given them, and there really aren't words to express the amount of gratitude we feel. We mentioned one of the possible treatments to Dr. Perry and he said he was aware of them, so he could give us more information on that as well. I just wanted to leap for joy when I heard that, because I wanted so badly to talk to someone who knew more about it, and here is my oncologist aware of alternative procedures.
We are also looking into using Mannatech products to boost my immune system. We've heard a lot of good things, and trust that God can use those products for healing if He so chooses.
At this point we just ask for prayer that we will be able to make the correct decision. We don't have a lot of time, and I am anxious to hear from Dr. Perry on Monday. I trust his opinion greatly. Thank you for your e-mails and notes of encouragement. You've been a blessing.