MDS – My First Year

Sometime in late November, early December of 2015, I was starting to feel short of breath.  I’ve had heart issues in the past and the symptoms I had made me think it could be a heart problem.  I made an appointment with my cardiologist who scheduled an angiogram.  Before the angiogram, a CBC was required.  My hemoglobin level was somewhere in the low 6’s.   I don’t recall the number.   Normal low is about 12.  In any case, the cardiologist had me admitted to the hospital for further testing.  That was December 29th.   I had consults with several different specialties.  Was I bleeding from somewhere?  The gastrointestinal doctors said no.  The hematologist asked a lot of questions about my past exposure to chemo and radiation and other chemicals and ordered blood tests.  The CT scans, blood tests, EKG’s only showed that I needed blood and I received several transfusions.  I was released from the hospital on December 31st without a diagnosis, but with an appointment for a bone marrow biopsy.  I never did get that angiogram.  No need for it.

I had my first bone marrow biopsy on January 6th, 2016.  It was a week later that I received the formal diagnosis of myelodysplastic syndrome MDS.  I’ve never heard of this disease.  I think few have, in part because it is one of the rarer diseases.  Somewhere, I read that only about 10,000 to 13,000 new cases are diagnosed each year. Even though I expected bad news, being told I have a bone marrow disorder was like a punch to the gut.  I probably forgot half the questions I was going to ask after actually hearing the words.  Over time, my hematologist, Dr. Daniel Frank (DuPage Medical Group), treated me using the standard treatments, and did a fine job of answering my questions, however annoying and repetitive my questions could be.

So, what is this MDS?  It is basically a disease that occurs when something goes wrong in the bone marrow.  Bone marrow failure disorder is how it is frequently described. My bone marrow is crap.  The bone marrow is responsible for making the red blood cells, the white blood cells and the platelets that run through the blood stream.  My bone marrow isn’t creating these cells, or at least, enough well-formed cells.

There is another problem with MDS.  There are so many sub-types, variants, that each flavor has its own “best” ways of treatment.  In some cases, minimal treatment may keep a person going for a long time.  In other cases, maybe not so long.  Some sub-types can become leukemic and MDS, at one time, was sometimes called pre-leukemia.  The sub-type I have, RCMD (refractive cytopenia with multilineage dysplasia,) has a 30% of becoming leukemic.  I’m not concerned with that. I’m more concerned with the progression of the disease.

Initially, I was treated with Aranesp.  It is an erythropoietin-stimulating agent that is intended to stimulate the growth of red blood cells.  I received weekly injections for 14 weeks before we gave up on this drug.  I received about ½ a dozen blood transfusions during this time, mostly, two units each time.  Aranesp didn’t help my marrow produce the red blood cells I needed.  At the time, my white count was a little bit low and platelets were mostly in a normal range.

Next came a “mild” chemo drug,  Vidaza (azatadine.)  I copied this description from an  MDS Foundation ( handbook:

 A medication that works by preventing a cellular process (methylation) that silences the genes involved in controlling the development of cancer. It may increase red blood cells, transfusion independence, hemoglobin, white blood cells, platelets, and/or decreases the amount of blast cells within the bone marrow.  It is categorized as a DNA hypomethylating agent and can be administered intravenously (IV) or subcutaneously (under the skin).

In other words, Vidaza was supposed to kill off the bad and let the good grow.  After six cycles, one month apart, we gave up on this.  It didn’t help with my red blood cell growth and during treatment my white blood cell counts and platelets dropped quite a bit.  I also had about 12 more blood transfusions.  By now, the nurses at the Advocate Good Samaritan Hospital Ambulatory Center and I were becoming friends.  That is where most of my transfusions were done.  I even had my preference of room and could describe the intricacies of the beds.  The one in Room 29 squeaked annoyingly whenever I made any adjustments to the bed, for example.

What comes after Vidaza failed to help?  Revlimid (lenalidomide) is what came next.  This drug is supposed to stimulate cell death and prevent new cell growth.  This drug isn’t really beneficial for the type of MDS I have, but it is one of those “maybe it will help” drugs. I never finished the first bottle.

Throughout the year, Dr. Frank and I talked about clinical trials that might help and stem cell transplantation. The current treatments that Dr. Frank was doing weren’t helping.  It was time to get another opinion, a more specialized opinion, and I was referred to Loyola Hospital for an appointment with a bone marrow specialist.  My new MDS doctor is Dr. Stephanie Tsai, a hematologist/oncologist at Loyola Hospital who specializes in bone marrow disorders and stem cell transplants.

Sadly, my numbers (white blood cells, hemoglobin and platelets) have gone down since my first appointment with Dr. Tsai.  I’ve become very transfusion-dependent for both blood and platelets. Infections have plagued me.  The  latest status on myself will be written in a future  post.

Treatments I have received all along have followed the treatment protocols in most of the literature I have read.  And there is a lot of literature.  After a while researching the disease, the reading becomes repetitive and mind-boggling.  They all describe the disease in similar fashion.  I almost think they used the same outline.


One thought on “MDS – My First Year

  1. Pingback: I Think I Live at Loyola (or My Home Away From Home) – Ray's Page

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