87-year old father with MDS- so many questions

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• July 9, 2011 at 3:16 am #23245
  MDSdaughters

  Member

  I’m writing for the first time as one of the main caregivers for my 87-year-old father who was diagnosed two years ago with low-risk, non-q deletion (IPSS score of 0.5) MDS with refractory anemia. Both Procrit and Aranesp were ineffective so his only treatment currently is blood transfusions every 2 – 3 weeks for his anemia (his hemoglobin count gets down to high 7’s, low 8’s by two weeks after blood transfusion). His doctors tell him that he could continue on the blood transfusions indefinitely, but his main problem now is that the transfusions don’t relieve his anemic symptoms as they did for the first few months. Currently the day after a transfusion he may still feel tired, weak legs, breathing difficulties, dizziness, achiness and general fatigue – although the symptoms do vary day by day and even at different times of the day. Again, his doctors tell him that this is just part of the disease, but I’m interested if anyone has had a similar experience and if there is anything more that can be done for these general fatigue/anemia symptoms.

  We have also considered going to the next level of treatment – Vidaza or Dacogen, or looking into clinical trial possibilities. At age 87 these might be very limited and we have to carefully consider the adverse side effects, but I would certainly like to hear opinions on and experiences with these types of treatments.

  Thanks in advance for any responses.

  July 11, 2011 at 6:15 pm #23247
  Mary4Mike

  Participant

  It is hard to recommend trying a treatment because the responses to each one are so varied among patients. What might have gentle side effects for one could also land another in the hospital with fever, neutropenia, etc. My husband had relatively no side effects from Revlimid or Vidaza. Dacogen was a nightmare. Vidaza was the only one that benefitted him. The symptoms you listed are the typical ones for this disease. My husband always said that the body eventually gets used to functioning on a low HGB, but that is not to say functioning at optimum levels. One just gets used to the symptoms, really. He also eventually was not helped by transfusions. We were told that this could eventually happen.

  Continue to ask the doctor questions about treatments.

  All the best to you and your father.

  July 11, 2011 at 6:39 pm #23248
  billboy

  Participant

  Hello Fellow Georgians,

  Great that your able to look after your father. I started out basically the same as your father except my age in early 2005 was only 70. Of the primary blood counts only my HGB was low and I had about the same requirements for transfusions as your father. Initially I had the same IPSS score and neither Procrit nor Aranesp affected my HGB count. I was given Dacogen two different times. After the first time I was transfusion independent for 25 months. After the second time the independence only lasted 9 months or so. Now whether I was transfusion dependent or not the fatigue was always present. Note that fatigue is the hallmark of this malady and it’s both physical and emotional. Sorry my experience couldn’t provide a better picture for you, but every patient is unique and he may have better results related to fatigue than I had.

  Bill F

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