My husband David’s journey with MDS began in April 2014, when it was discovered almost by chance while we were on vacation. David was bitten by a brown recluse spider and had a very severe reaction to it. He had to be hospitalized, which is when he got his first blood test in years. The doctor noted that his blood counts were low and, while he didn’t rule out that the spider bite might have affected the counts, there was a possibility of myelodysplasia.
It was a ten-day hospitalization, during which he was also under the care of a rheumatologist because his joints were severely affected by the spider venom. When David’s blood counts did not improve, the doctor was certain there were other factors involved so she referred us to a hematologist hematologist: (hee-muh-TOL-uh-jist) A doctor who specializes in treating blood diseases and disorders of blood producing organs. at the Moores Cancer Center at University of California, San Diego. They did a bone marrow biopsy bone marrow biopsy: A medical procedure to remove a small piece of solid bone marrow using a needle that goes into the marrow of the hip bone. The solid bone marrow is examined for cell abnormalities, the number of different cells and checked for scarring of the bone marrow. , which led to the official diagnosis of intermediate MDS, as defined by the revised International Prognostic Scoring System International Prognostic Scoring System: A system that turns patient data into a score. The score tells how quickly a myelodysplastic syndrome (MDS) case is progressing and helps predict what may happen with the patient's MDS in the future. Also called IPSS. , also known as IPSS-R. David was only 52 at the time, younger than the average age of newly diagnosed patients.
Looking back, we began to recognize some of the clues that his condition had been going on for some time – like getting sick more often than us and taking longer to get over colds.
Next, the hematologist explained the three FDA approved drugs, azacitidine azacitidine: It works by reducing the amount of methylation in the body. Methylation is a process that acts like a switch to turn off or “silence” genes in certain cells. When these genes (called tumor suppressor genes) are turned off, MDS cells and cancer cells can grow freely. Azacitidine is approved by the U… , decitabine decitabine: It works by reducing the amount of methylation in the body. Methylation is a process that acts like a switch to turn off or “silence” genes in certain cells. When these genes (called tumor suppressor genes) are turned off, MDS cells and cancer cells can grow freely. Decitabine is approved by the U… , and lenalidomide lenalidomide: Lenalidomide is a capsule that is taken by mouth. It is approved for treating low-risk, transfusion-dependent myelodysplastic syndrome (MDS) patients with an abnormality of chromosome 5q. It is currently in clinical trials to test its efficacy with a broader range of MDS patients. For some MDS… – noting of course that the latter was on for the 5q deletion category of MDS, which David did not have – and he was put on azacitidine. We also learned a clinical study of oral azacitidine – taken by mouth, in pill form. We were interested in this but it meant another biopsy to see if prospective patients are qualified for the trial. However, because he remained in high-risk status he wasn’t qualified, as his blast count had actually increased. We thought things over for a month or two, but knew we had to get started.
In October of 2014 David began the treatment, getting the subcutaneous shots instead of intravenous administration – he was on the treatment cycle of seven days of 2 shots per day, and then three weeks of no shots. But he responded well to the treatment, and after about three months on azacitidine, he no longer needed transfusions.
A search for a stem cell donor had been started prior to this treatment. Because David is multiethnic, no matches were immediately found, so he was to have a stem cell transplant from cord blood {ADD statement about difference of cord blood and matched donor). Then right at this point a matched donor was found although was not available until August. Still we decided to wait for this matched donor transplant.
But then the donor fell through, and this was a disappointment. So we decided to go ahead the with cord blood transplant cord blood transplant: A procedure where umbillical cord stem cells are given to the patient through an intravenous (IV) line. Stem cells are collected from an umbilical cord right after the birth of a baby. They are kept frozen until needed. In time, donated stem cells given to the patient begin making new, healthy… as we originally had planned. In September 2015, my husband had the stem cell transplant from cord blood, which was of course preceded by 3 days of preparation by chemotherapy chemotherapy: (kee-moe-THER-uh-pee) The use of medicines that kill cells (cytotoxic agents). People with high-risk or intermediate-2 risk myelodysplastic syndrome (MDS) may be given chemotherapy to kill bone marrow cells that have an abnormal size, shape, or look. Chemotherapy hurts healthy cells along with… , and then followed by radiation treatment. The actual transplant occurred at UCSD on September 25.
David was discharged and came home on October 20, and although it took a while for him to recover some significant side effects of treatment that began in the hospital and during his recuperation at home. We are watching things closely with subsequent biopsies and while results are encouraging, we’re being cautious as results still show what they are calling ‘residual disease’.
Son Steps Up
Right from the start of David’s diagnosis, we found AAMDSIF and have been getting information from the Foundation ever since. We saw an announcement that AAMDSIF was connecting with the National Council of Churches (NCC) to promote swabbing drives to tie in with Aplastic Anemia Aplastic Anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most… and MDS Awareness Week.
So I discussed it with our son Connor, who is 14, and he liked the idea of doing a swabbing drive through our church. He understands the importance of helping build the pool of potential donors, particularly because bone marrow failure bone marrow failure: A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be… has struck our family before. My husband’s mother passed away from aplastic anemia while waiting for a match that never came, so we are committed to doing what we can to help the community of patients like us.
The swab drive was held at Connor’s church school. He passed out flyers, spoke at church about it, and publicized it at school. He worked with the school administration so that not only students, but also the students’ families are aware of his drive. Connor is now ensuring that the entire congregation and local school community knows that he’s standing up to make a difference for bone marrow bone marrow: The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow. patients everywhere. “It was my decision to hold the drive,” says Connor. “I’m speaking about it in school and church about it.”