Advice based on my father’s MDS experience

[canuck01]

My father died exactly a year ago today from Leukaemia. I wanted to post a bit of his story here in the hope that it helps other patients in some way.

Dad had MDS and it advanced to AML. He was 72 years old. His MDS was diagnosed about 6 years ago but really never gave him any trouble. He was a fairly healthy senior, active (golfer, racket sports) who enjoyed wintering in Florida. He has a loving wife, family and grandchildren. But in spring 2019 his numbers starting going haywire including extremely low platelets (consistently below 10 count). He applied for and was (reluctantly, for his age) approved to receive a bone marrow transplant in June, but he turned it down because it seemed an extreme choice at the time. He had MDS but he was still feeling very healthy. So he declined transplant and opted for light chemotherapy to try to prevent his MDS from advancing. The summer of 2019 his platelets continued to be very low and he was put on a routine of blood transfusion every few days. He got an enlarged spleen. He had difficulty eating and lost a ton of weight. The chemo continued but his numbers kept getting worse. Petechiae set in and his body was covered with tiny purplish spots. He was hospitalized (again) but this time he never came out.

He had an oncologist, an MDS specialist and of course a family doctor. When he was eventually hospitalized, we had many different visiting doctors (gastroenterologist, nose and throat specialist, hospital generalist) and received differing and rapid fire medical advice. It was hard to keep track of who was saying what, let alone what advice we should follow. It was very challenging to sort out, especially when emotions are running high. Of course our family was very distraught during Dad’s final days when he could no longer make alert decisions for himself. We found ourselves confused, overwhelmed and unsure of the right things to do to help prolong his life.

Now, a year, later, we continue to replay the sequence of events and second guess the decisions we made about Dad’s care at the time. I have no qualms with the quality of care he received, and am thankful for the professional, caring and expert nurses, caregivers and doctors who attended Dad. But looking back what was missing was a ‘Quarterback’, to use a football analogy. We needed someone who could absorb the various medical advice we were receiving from various doctors, process it, consider Dad’s condition, and make recommendations. I know the Oncologist is supposed to fulfil this role but he was disengaged and difficult to contact. Dad’s family doctor was the same. And our MDS specialist, who was wonderful, worked at a large hospital two hours away where she treated likely hundreds of patients and only had so much time.

A Quarterback would have helped us to sort through the maze of information, advice, feelings and emotions coming at us non-stop. It was simply overwhelming and we ending up feeling like we were pushed into certain decisions at the end of Dad’s life that we now question.

Anyway, sorry for the ramble but my hope is that you can find a doctor willing to oversee your situation, provide sound strategy, and guide you toward recovery and health. Best wishes.

[Pat Lawson]

I am so sorry for the pain you are going through. Unfortunately there are no clear cut answers with this disease. My husband went thru a clinical trial hoping to give him an extended period of time or at least to help others in the future. He quit responding to the treatment after 14 months which was better than the 9 month expectancy that he was given. He met with the transplant doctor during that time and decided that the odds were against him and to let go and let God. Next week it will be 2 years since he was diagnosed. Please don’t second guess yourself. There are no clear cut answers with this disease. He receives blood and platelet transfusions weekly and we are grateful for every minute, hour and day that we have with him. He cries almost everyday about how he will not be here for his kids and grandkids. I pray that someday there will be a cure for this disease. May God bless you and your family.

[Rita Knopick]

My husband passed in July 2020 with MDS that transitioned to AML. I was his “Quarterback” but the disease once it transitions to AML is a no win situation. I still ask myself was there anything more I could have done and I know in my heart there was not. My biggest regret is that when he was feeling fairly good and could have traveled and vacationed I was too afraid to leave our area and the doctors and hospital that were treating him. I too pray every day that there will be a cure someday for this disease.

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