MDS Learning and Advice

[Anne C]

It’s taken me a while to write this but I wanted to share our experience in the hope that it saves a life. My mother was diagnosed with MDS in May of 2016. Prior to this she had been experiencing a lot of symptoms for a few years – shortness of breath and low platelets the major ones. Once her hemoglobin dropped as well she was sent for a bone marrow test which came back as MDS. Upon hearing what she had – and being told she had about the best kind you could have 20q del plus limited blasts – we were concerned but assured she was very lucky. She began a treatment of Procrit/Nuprogen and responded very well and within a month was almost back to her old self. That was until she was told to go off the drugs to do another BMT so they could get another benchmark – she asked both her doctors (yes we did use a center of excellence) if this would be necessary since she was doing so well. Both assured her she wouldn’t have any issues. They were both wrong and my mother ended up in the hospital needing a transfusion. The drugs were restarted (after a 2 week departure) and her body did not step back up to where she was prior. Just before the holidays she was encouraged to start Vidaza – and again we asked about implications of the drug since it was a form of chemo. Again both doctors assured us that at most she might have some stomach issues and to get Imodium. My mother decided to wait until after Thanksgiving but given the assurance she would have limited reaction to this decided to start the drug right after so she could use the winter for the treatments with the hope that by the spring she would be feeling good again. Again the doctors were wrong and although my mother got through the Vidaza first round of treatments fine – the week after she was back in the hospital and within 2 days died of heart failure. She loved Christmas and would never had started what was optional at the time had she thought or knew the risk drugs can pose. Oh and BTW neither of her doctors checked on her after she was admitted to the hospital this time around and we never used the Imodium. Prior to starting the drug my mother was told ‘you’ll certainly be here a year from now, but doubtful you will be here in five’.

I share this story not for sympathy but to encourage all of you to be your own advocates. Ask questions of your doctors and recognize that these ‘centers of excellence’ and blood specialists in many cases are taking on too many patients – no one knows you better than yourself or your family. Question and advocate. Additionally regardless of how good these drugs are they are serious drugs – get a physical clearance before starting any drug. The year prior she had to get clearance from the cardiologist to have hand surgery because of her low platelet counts. To start chemotherapy she was told to buy Imodium. Just because you have MDS doesn’t mean you can’t have other medical issues so stay connected more than ever to a network of doctors, particularly cardiologists. Advocate for yourself, question doctors as you need and keep track of all your medical needs not just MDS. My mother had a great life but it was cut shorter than it needed to be and oh how we wish we had that 1-5 years we were told 2 weeks before she died. I wish you all the best of luck.

[Diane Toman]

I agree with Anne C but even if you ask questions you are not given the real answers it seems. My husband was diagnosed in May 2016 even after a cardiac work up 9 mos. before because of weakness and sweating- nothing showed until April 2016 when his platelets dropped to 110,000. He had a previous stem cell transplant in 2012 for multiple mylenoma. He had 4 rounds of Vidaza before we stopped his platelets stayed at 1000 despite frequent platelet and blood transfusions. He was getting weaker and did not eat much in October and then one day he felt good and was walking down the back steps tripped and received 2 subdural hematomas and died 2 days later. There just is not any good advice and be thankful your mother lived with the disease so long- I still feel ambushed with the 5 month run of the disease.

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