It’s been a while since I’ve posted. As they say, no news is good news. I’ve been taking the immunosuppressing drug Tacrolimus (“Tacro”) for the past seven years. Tacro is often given to stem cell transplant patients to tamp down graft versus host disease (GvHD). GvHD is a condition in which the newly transplanted immune system has trouble telling friend from foe and attacks the patient’s organs. The problem with being immunosuppressed is that you are susceptible to bacterial, viral, and fungal infections that would not threaten a person with a normal immune system. For that reason, I’ve been ..read more

Between 3 and 4% of Americans are immunocompromised. People with HIV, recipients of organ transplants, cancer patients and others whose immune systems may be challenged are at increased risk of infections that could be deadly for them. Covid-19 has been a special concern for them. As a leukemia and stem cell transplant survivor, I take a daily dose of tacrolimus (Prograf) to suppress my transplanted immune system so that it doesn’t run wild and attack my organs. The Covid-19 vaccines have been a huge success in protecting people with normal immune systems. What is not known is whether the vacc ..read more

I volunteered to participate in a study at MD Anderson to see if 12 months of Azacytidine chemotherapy following a stem cell transplant would improve relapse free and overall survival. A report from that study ot onesuggests that there is no benefit in taking Azacytidine post-transplant. That’s a disappointment since it was not very comfortable getting Azacytidine injections in the belly five days in a row every month for a year. Oh well, nothing ventured, nothing gained. That’s how science works. Onward and upwards my friends ..read more

I celebrated last week.  The preliminary results from my recent bone marrow biopsy came back negative. After more than four years of remission, it is still cause for celebration when your bone marrow biopsy comes back negative. It turns out I celebrated too early.  I should have waited until all of the test results were in. Two days ago my local oncologist broke the news that the next generation sequencing (NGS) test that analyzes DNA for abnormalities in 177 genes found a low level neoplastic myeloid clone of the DNMT3A,  TRAF3, and SETBP1 genes in my bone marrow.  The DNM ..read more

I am amazed by the number of our fellow citizens who refuse to wear masks in public to protect others and themselves during this pandemic. I was sitting in the waiting room of a medical testing lab yesterday getting a blood test to diagnose the cause of my most recent case of “walking pneumonia”.  Many leukemia and stem cell transplant survivors like me are required to take medications that suppress their immune systems.  Lung infections are a constant threat. The testing lab removed all but six chairs from its waiting room and required all patients and staff to wear masks.  Whi ..read more

I recently underwent my regular bi-annual bone marrow biopsy.  I got the results this week.  “No MRD.  Diploid cytogenetics.  100% donor.”  In layman’s terms, that’s good news.  The “No MRD” means no sign of minimal residual disease.  That means they can’t find any leukemia cells in my bone marrow.  The “diploid cytogenetics” means I don’t have genetic mutations that might be an early warning of recurrent leukemia.  The “100% donor” means that all of the cells tested in my bone marrow had the DNA of my brother/donor.  None of those cells had my old DNA. I continue to battle severe dry eye and ..read more

One of the many things I learned as a result of fighting AML leukemia is that leukemia is not a single disease.  It is actually a catch-all category for many genetic mutations that are similar but do not all respond to the same treatment.  As a researcher in Canada said recently in an article in the journal Cancer Cell: “It’s important to understand that both myeloid leukemia and lymphocytic leukemia are a combination of approximately twenty different genetic diseases,” explained Sauvageau. “What we call ‘leukemia’ is actually the group of symptoms caused by these diseases. We thus had to test ..read more

I celebrated my third birthday (post stem cell transplant) last week.  On top of that, I got great news this week.  My latest bone marrow biopsy results came in and they are NEGATIVE for minimal residual disease.  That means no leukemia cells can be found in my bone marrow.  That doesn’t mean I’m completely home free.  There can and often are cases of leukemia relapse even years after a transplant. So-called “stealth” leukemia cells can linger or pop up in bone marrow long after a transplant as explained in this article.  However, after three years without a relapse, the odds are beginning to ..read more

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