3/13/17

pomalidomide (year three)

It has been ten months since my last myeloma update. That, in itself, is good news. This January I began my third year on pomalidomide. I continue to take this pill in conjunction with dexamethsone and cyclophosphamide and the results continue to be excellent. My monthly blood tests reveal that my free light chains range between 35 and 50. It means they are very low - nearly normal. This is good news for both my myeloma and amyloidosis. I am so very fortunate to have been diagnosed at an early stage before suffering any symptoms from my diseases and to be receiving such effective treatments. I could almost forget that I am living with an (at this point) incurable blood cancer ...

But, as always, there is no forgetting so long as dexamethasone is part of the treatment regimen. Each Monday I take 20 milligrams of dex and return to the steroid roller coaster - up on Monday and Tuesday, then down on Wednesday until Friday afternoon. It is a physical and emotional weekly journey. Early in the week I am manic, sleepless, emotional, with energy to burn. Later in the week I feel hung over, achey, bloated and tired. By the weekend I am close to normal. Occasionally - when there is a special family time in the week ahead - I don't take dex. What a relief! My hematologist agrees that, from time to time, I can skip the steroid without it having a negative impact on my ongoing treatment.

Once again this winter I struggled with viral and bacterial infections that laid me low for weeks at a time. The steroids weaken my already compromised immune system. When I get sick I am slow to recover. This winter it included coming down with a double ear infection that took multiple antibiotics to fend off and led to weeks where I was hard of hearing and suffered with vertigo.

It was six years ago this month that I was having a variety of tests to determine what had caused amyloids to show up in my prostate biopsy. Myeloma was a possibility that became a reality in April of 2011. I am very grateful that the shock of that diagnosis and the uncertainty of that time has become the new normalcy of my retired life as grandfather of eight.

Big thanks to my family, friends and colleagues who continue to be such a great support and encouragement.

2 comments:

  1. I am very glad to hear your health is better these days and that you can enjoy special family times without the meds. A big HI to the family. Blessings

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  2. Thanks for posting this, Ed. Glad to hear the new normal is holding steady for you.

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