You may recall in a recent post I described how, after a year of bad news after bad news, an RFA procedure that was scheduled for July 17th was cancelled at the very last minute. The numerous lung tumors, old and new, that were detected on a scan in early June were either shrinking or no longer active, and Dr. Hong felt that there was nothing problematic enough to treat. This was a mind-blower, to say the least. The prior seven months had been a race to keep up with the increasing speed of the Whac-A-Mole treatment plan my team and I put into place. Since then I have been straining my non-scientific brain to come up with how this reversal of fortune could have happened. I was thrilled, grateful and confused all at once.
Several people told me not to question what seemed to be a miracle. I'm of the mind that the word "miracle" is overused, and I wasn't quite ready for that conclusion. One thing I've learned is to expect the unexpected. Another bad scan and there goes the miracle. But those that said it was the hand of God had a point. I knew that a lot of people have been praying for me for a very long time. I've been praying quite a bit too, believing strongly in this power. How can I not, after everything I've been through? But something told me that there's more to it.
I looked for something that would clinically explain how the cancer not only slowed down, but took an about face. I decided to wait for the next scan to test my long shot theory, and yesterday I got the confirmation I had been hoping for. The PET/CT showed only one "hot" spot in my upper right lung, and nothing else that looks like cancer! I went over my list of body parts that have been treated since January:
- right hilar lung tumor in a very dangerous spot, treated with RFA and later with radiation -- check!
- right kidney tumor, treated with cryoablation -- check!
- left rib tumor, treated with one big dose of radiation -- check!
- a bunch of new and old lung tumors, growing in the lining of both lungs (planned to treat with RFA) -- except for the one hot spot, all stable, shrinking or no longer active!
I've written a lot about graft vs. host disease, or GVHD -- the rejection process that occurs when someone gets a stem cell or bone marrow transplant from a donor. GVHD hit me hard almost immediately after my transplant and kept knocking me down for 1.5 years. The good news is that having my new immune system fight me, the host, meant that it was also fighting the leukemia, a process called graft vs. tumor. So far, science has shown that getting a transplant for a blood cancer usually never works for also treating a solid mass cancer in the same person. Usually never. My theory is that graft vs. tumor is giving both leukemia and ACC a smack-down. This is the only clinical explanation for what is happening.
Adenoid Cystic Carcinoma is a very rare cancer, afflicting only 1,200 people a year. Leaving aside the very few patients like me, who have this initially appear in the breast, I haven't found anyone with ACC who has also had a stem cell transplant from a donor. N=1.
On the other hand, why did this smack-down only start this summer when my transplant was 2.5 years ago? I was on steroids and other immunosuppressants for the first 1.5 years to treat GVHD. My immune system couldn't even ramp up to normal until these drugs completely left my system. Plus, ever since the transplant, I take a really long time to heal. I'm still suffering from Post Thoracotomy Pain Syndrome from the lung surgery I had 13 months ago.
Yes, the scan yesterday wasn't totally clean, but I'm a long way from where I was earlier this year. (I'll have a cryoablation on the hot spot sometime before the end of the year. There's no urgency.) Even if graft vs. tumor doesn't shut down Whac-A-Mole long term, my experience still shows a smack-down. The evidence supports the theory, regardless of what happens in the future, and I plan to share it with the researchers of the ACC clinical trials and anyone else who will listen. I'm convinced that there is a connection between ACC and treatment(s) for Acute Myeloid Leukemia. Maybe this connection will lead to something, anything, that might contribute toward a treatment for a group of people and their families who are going through unthinkable suffering.
Although my doctors all agree with my theory, none of us saw this coming. Not with my history. Enter, the power of prayer. I believe that prayer allowed graft vs. tumor to fight the huge amount of cancer that was found over the last year. Science and faith are not mutually exclusive.
N=1 is not as lonely as it sounds. It's actually simple but powerful math, inspired by simple but powerful prayers.
CANcer + HEALth = CAN HEAL