Dr. Visit today

[camiboxer]

Well we finally have a diagnosis, (minus the chromosome results—still waiting). My dad was diagnosed with RARS with 1% blasts in the marrow.
EPO was talked about but since dad says his energy level is a 3 based on a scale of 1-10 (10 meaning NO energy) the Dr. said that it was totally up to him on if he wanted to try it. They tested his own epo levels and they are slightly elevated so that hormone is trying to tell the RBC to kick into a higher gear.
Don’t really know what to do now except “hurry up and wait” I guess. Still feel very lost and confused even after the official classification.
Dr. said he couldn’t give us any info on prognosis, when it would get worse. He said it could be 3 months it could be the “typical” RARS patient and he mentioned 3-5 years. I don’t know if he meant life expectancy or the development of symptoms. Maybe I just really didn’t want to know? His iron levels are slightly elevated and he was told to forgo any vitamins that contain iron. Gave us the scenario that *most* patients start transfusions with a RBC count of 8-ish. His numbers have dropped with every test, currently at 10.4.
Any words of encouragement? Advice? Thoughts? Personal experiences?
Anything is much appreciated.

[Caroline]

Hi Camiboxer.

I remember feeling the way that you are describing now. I didn’t want to WAIT and SEE. I wanted to find the answer and cure Dad NOW. It doesn’t work that way. This can be a very slow moving disease. Some people go for several years without showing any symptoms at all. Only their blood tests tell on them. My Dad’s only symptom for quite sometime was a perpetual sniffle. It was his weakened immune system. He finally saw his Family Doctor who recommended an Immunologist and we found out that Dad has MDS. Then he was sent to the Oncologist who has taken care of him ever since. He did nothing for Dad except put him on Vitamin B6 and he took blood tests every three months for 3 years. Then one day the Doctor asked to do another bone marrow biopsy and we found out that Dad has CMML. He was never sick. He was only tired and kind of pale looking with a constant slight sniffle. He is also 80 years old and has worked very hard all his life.

Here we are 4 years since we first heard the words Myeloysplastic Syndrome. Dad has chronic kidney failure and CMML now. He gets erythropoieten shots as needed and still….that is all. Sometimes I want to scream at the Doctors to STOP WAITING until Dad reaches an acute stage. But then I have to stop and realize that waiting is all we can do. We wait and we also value and appreciate each day we have with him as never before. If he is sleepy, we let him sleep. If he is energetic, we do things with him. If he feels like talking, we talk. If he wants to look at the television, we watch TV. It took me a long time to be at peace with waiting. I still have days when I am not very patient but really…right now it is all we can do. Be glad that your Dad still FEELS good and energetic. He may feel this way for a long time to come. Try not to consider him to be sick until he shows signs of being sick. If I had understood more about MDS at the beginning of Dad’s illness, I think I would have worried him more than I did. I am glad that I didn’t learn anything until he was 3 years into it. He seemed perfectly healthy and felt good too except for that silly sniffle.

In the meantime, read as much as you can on past posts in this Forum. And keep your Dad’s immune system healthy so that he can fight off anything that comes along which could weaken him. There are several different methods. You will find them as you read the posts. It will be well worth your time.

Best Wishes
Caroline

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