Father Newly Diagnosed with MDS

[Joefishbeedies]

My father was diagnosed with MDS last year. He is in the very early stage with what his doctor is calling RARS. This past week he was tested and has too much iron in his body and has to have a shot every three weeks and take pills. My fathers score also went up 6 points. I have NO idea what any of this means. I really want to become educated about this disease so I can help my parents know what to ask the doctor. The doctor has told my parents I can call too. Can anyone recommend some literature that explains the “score” to me. I asked my parents “6 out of what?” and they had no idea. I really would like to know as much as I can about this illness. After reading all of the posts- it really makes me nervous that my father doesn’t realize how serious this condition really is.

[billboy]

Hi Joe,

OK, so they’ve made a diagnosis of RARS which stands for refractory anemia with ringed sideroblasts. RA and RARS are the least virulent forms of MDS. Just Google myelodysplastic syndoromes and you’ll find a lot of info on the various types of MDS. It may be that your parents were referring to a blood count (hemoglobin,white cells, platelets or serum ferritn) when they said the score went up 6 points. The only score I can think of in MDS is that regarding a calculation of life expectancy. For example there is the commonly used International Prognostic Scoring System (IPSS)which provides such data. However that system estimates a numerical score (only up to 2) based on one’s condition and then provides mean life expectancy or range in years or months. It only provides an estimate and there is a wide variation in the actual number of years lived. It’s just a reference, for the most part, to determine what kind of treatment an MDS patient should receive – supportive care or aggressive intervention. Look, this is an extremely complex disease, as all blood diseases are, and requires learning a new vocabulary of terms related to the blood. It’s a lot of work, but will be required to have a good layman’s understanding of the condition.

Perhaps your parents could get a written diagnosis the next time they visit the doctor That would be a big help. People at this site will do there best to help you understand this disease, but you’ll have to do some digging.

Bill F

[g-masews]

When your parents are seeing the doctor, have them get a copy of the pathology report on the BMB. It will be hard to read, very technical of course, but as you learn more about this disease, more and more will be understandable. Also, ALWAYS get a copy of the CBC counts and keep them so you can compare each time one is done. Some people even make grafts or charts to help them watch the counts. All of these things are yours for the asking. Don’t be afaid to ask.

[billboy]

Hi Joe,

Here’s an excellent article on MDS – just be sure to click on “more>>” following the lead-in comments for each sub-heading:

http://www.cancernetwork.com/myelodysplastic-syndromes/

The second paragraph dated October 1, 2007 provides info on the IPSS, that I referred to in my first post to you. Here’s the way it works. The doctor reviews three characteristics of the patient; bone marrow myeloblasts (usually just referred to as blasts), karyotype (chromosone abnormalities), and number of cytopenias (blood line deficiencies, like low platelets, low white cells or low hemoglobin). So here’s an example. My blasts were < 1% when measured quite a while ago - prognostic variable score = 0. Next my karyotype was normal - score = 0. Lastly I have two cytopenias - low hemoglobin and low platelets - score = 0.5. Then adding all three together my total prognostic variable score equals 0.5. So my risk group is intermediate 1 or simply int - 1.
The median survival is 3.5 years; interestingly I was diagnosed in January 2005, just a little over 3.5 years ago.

Bill F

[Joefishbeedies]

Thank you both of all of that amazing information. This was exactly the kind of information I was hoping for. I am going to have my father get all of the information you both requested from his doctor. Hopefully with that and doing more digging I can start to help my parents understand this condition more. Thank you so much.

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