May 5th was a big day for me. It was the second anniversary of my stem cell transplant. I underwent a bone marrow biopsy at MD Anderson and got the results this week. No MRD. That means there is no measurable residual disease. In other words, the test can’t find any signs of leukemia in my bone marrow. As Dr. C once said, I am living a charmed life. I’m reminded, however, that leukemia cells have a way of hiding out in bone marrow and popping up unexpectedly years later. Doctors call that a relapse.
Anyone who survives leukemia knows that relapse is a constant threat. Even those who have a stem cell transplant face the very real possibility of a relapse of their disease. That is a constant threat in the background that keeps you focused on the fact that your time on this earth is limited and you need to make the most of every day you have. I am one of the lucky ones so far. I have had the fortune of being treated by the best doctors at MD Anderson which also happens to be the best cancer center in the world. The odds were stacked in my favor. Most don’t have that advantage.
Canadian researchers report that “[i]f an allogeneic stem cell transplant is done during first remission, the 5-year disease-free survival rate is 30%–50%. If there has been no recurrence at 2 years after the stem cell transplant, the person has about an 80% chance of staying in complete remission for a long period of time.”
Now that I’ve lived for two years post-transplant, it looks like the odds are fairly good that I will not relapse. The threat is still high enough that I will continue to need quarterly bone marrow biopsies for the foreseeable future.
There is an old saying that sometimes the cure can be as bad as the disease. When it comes to AML the disease is so horrible that the cure can’t possibly be worse. However, the cure can cause significant problems for those who do survive. Graft versus Host Disease (GvHD) is a constant problem for many of us with new immune systems. A new immune system sometimes can’t tell friend from foe.
In my case, my new T-cells are confused and sometimes wreak havoc. They did a number on my tear glands causing so much scar tissue that my eyes can’t produce tears. I’m learning to live with that. I wear large Prose scleral lenses which are hard contact lenses that sit on the white of the eye and keep my corneas bathed in a saline solution. Even though they protect my corneas from scarring, they don’t protect the rest of my eyes from drying out. I can’t read or do computer work for long stretches of time. Even writing this blog has required multiple sessions to give my eyes time to recover from the pain. I’ve learned to stay outside in the high humidity as much as possible and to avoid heavily air-conditioned rooms and ceiling fans.
GvHD continues to attack my blood platelets. It appears that exposure to a random virus last November caused confusion in my new immune system. As a result, my T-cells began attacking platelets as quickly as my bone marrow could manufacture them. That’s a condition known as ITP. I’m taking Promacta (eltrombopag) which is a man-made hormone that signals the bone marrow to produce more platelets. So far my platelet count has stabilized around 121k which is just below the low normal range. The big question is whether I can be weaned off from the Promacta with time.
I had another scare last month. I remain on tacrolimus, an anti-rejection drug that suppresses the immune system. That makes me more susceptible to infections like viruses and bacteria. Crowds are my enemy. I sometimes forget and find myself in a crowded restaurant with people coughing or sneezing around me. Last month I came down with an upper respiratory infection and developed a deep hacking cough more severe than any I have ever experienced. A chest X-ray showed that I didn’t have fluid in my lungs but the radiologist remarked that my lungs were expanded in a way that suggested COPD. That set off alarm bells because if GvHD targets the lungs, death usually follows within two years. COPD-like enlargement of the lungs is one of the signs of GvHD in the lungs. Fortunately, I dodged another bullet this time. A follow-up X-ray and a pulmonary function test at MD Anderson showed no signs of GvHD of the lungs. It is a reminder that life will not be normal for me in the future. I have to remember to avoid crowds and sick people as much as possible.
In the meantime, I am celebrating life and enjoying the company of Mary Pat, our kids, grandkids, and friends. Life is good. Onward and upward folks.