I am sitting the in the Bone Marrow Transplantation wing of the hospital. I was scheduled to start radiation at 6 a.m. this morning, but instead, I received a call from my Oncologist. She has been researching all of the studies to determine if we should proceed with the transplant. She said my last biopsy showed a trace amount of the Philadelphia chromosome at .00042%. I also tested positive for the Rhinovirus (common cold) yesterday. The cold puts me at a higher risk of getting pneumonia during the transplant. The Ph chromosome puts me at a higher risk of relapse.
Factoring in both the variables, we decided to postpone the transplant until I get rid of the cold and Ph chromosome. I don’t know how long it will be and I don’t know if the donor will still be available. There are a lot of variables to consider, but we think this will give me the best chance of beating this wretched cancer.
I woke up from sedation after getting the Hickman Line installed in my chest with a voicemail from the transplant nurse. She advised the second donor tested positive for an antibody and would not be able to donate. The news was less than a day before I was scheduled to be admitted to the hospital.
The original donor had already backed out for the date we wanted. We still had hoped that he would be available at another date, but unfortunately, we found out that he permanently removed himself from consideration.
3rd time is a charm, right? The transplant team went back to the registry and found another preliminary match! He is not from the United States and that is all the personal information they will release. He has agreed to donate and is scheduled to complete blood work and a physical exam on October 30th. They think he will be a 9/10 match, but will not know until the final blood tests are reviewed. The first two donors were only 8/10 matches, and with a 40% survival chance, the extra point is huge!
The transplant nurse said I should plan on being admitted on November 12th. We won’t know the results of the donor blood tests until November 9th. If everything goes smoothly this time, I will get the donor cells on November 20th.
Thank you to everyone that has been tested to be my match. I never knew the significance of bethematch.org. Without the awesome person donating his cells to me, I would have a 0% chance of survival. If you are already registered THANK YOU! If you are not, please take a look at the site and consider registering. I only have 4 partial matches worldwide. You could save someone’s life by becoming a donor!
It has been 6 weeks since I was last in the hospital. I had less than 2% Leuk remaining. I stayed in the hospital for 9 nights. I started Blincyto, which is administered by IV 24/7. After my inpatient stay, I was released with a pump to keep the infusion going around the clock for 19 more days.
My donor has been great the last couple of months. He has done everything asked of him. Unfortunately, last week I received a message from the transplant team. My donor is no longer available. We didn’t receive any additional information about how long he was unavailable or if he would ever be available.
The transplant team scrambled to contact my backup donor. It was a very long 2 days before I received the call. The second string donor agreed to donate! I continued on to get a bone marrow biopsy and lumbar puncture. The transplant schedule is only delayed by 1 day.
My biopsy showed no cancer in the marrow!
I met with my oncologist this morning. My biopsy showed no cancer in the marrow! Blood counts are good and I am scheduled to get another line put in my chest in the morning. This will allow a higher flow, which is necessary for the transplant.
The second stringer tested positive for an antibody. I cannot accept his cells if the test is correct. The blood is currently being retested and we should hear the results tomorrow. The transplant team and oncologists are moving full speed ahead with the transplant, so I really hope the test comes back negative.
My 5-year survivability dropped a little, but my odds of living through the transplant are higher than I expected. My doctor said I have about a 40% chance of beating Leuk. She said I have greater than a 70% chance of living through the transplant.
I have cancer, more specifically Pre-B cell Acute Lymphoblastic Leukemia (ALL) Philadelphia Positive. Leukemia is a rare disease which affects 2 out of every 100,000 people. The average person’s lifetime chance of getting (ALL) is less than 1 in 750 compared to dying in a car crash, 1 in 114.
I have a chromosome abnormality, it occurs in 25% of (ALL) patients. A piece of chromosome 9 and 22 break off and trade places. The new chromosome is called the Philadelphia Chromosome (Ph+).
The Ph+ mutation puts me in the very high-risk category which is associated with the poorest prognosis of all Leukemia.
The only cure for Ph+ (ALL) is to get a transplant. To get a transplant you must be fit enough to go through the process, get a matching donor and be totally free of cancer cells. I passed the fit tests and have a partial match unrelated donor that my doctors are confident with. I was scheduled for a transplant on September 15th. Unfortunately, my last bone marrow biopsy before the transplant showed a small percentage of Leukemia, less than 2%.
Luckily, there is a new drug available to me as an alternative to chemotherapy. I am about the 20th person to be treated with the medicine at OU. I am currently on day 5 of a 9-night stay while being treated. I will go home with the medicine and will be infused 24 hours a day for 19 days. Hopefully, after I complete this cycle, I will be in complete remission. After CR is confirmed with a bone marrow biopsy, we will schedule a Bone Marrow Transplant soon after.
My oncologist initially gave me a 60% chance of living another 5 years. I don’t know what challenges are ahead with this lousy disease, but I do know that I will never, ever, give up the fight against Leuk.
LOSING IS NOT AN OPTION.