IPSS and WHO scoring system

[Joe Catalano]

Just need to express some thoughts not asking a question. I was diagnosed with low risk MDS in June 2021. Been doing a lot of reading to understand it all. It seems as though the intervals of the scoring system allow for a median survival for anywhere from 1 to 8.8 years. Don’t mean to be morbid but that’s extremely humbling and sad. I do wonder how long the 50% who live beyond those parameters live?

[Joe Catalano]

I’m replying to my own post I pray for all of us that the medical community can come up with some better treatments for us very soon.
May God bless us.

[Siobhan Scully]

Hi Joe, my husband was diagnosed last April with High Risk MDS and like you I have done some research on the disease and it is my understanding ( and I might be wrong ) that the IPSS and R-IPSS scoring system prognosis is based on patient’s who have has no treatment. I agree there needs to be more treatment options available in the future .

[Roderick McCune]

My oncologist says mild mds patients can live for decades. I know it is difficult to know for sure, but I am trusting in the God who made all things including me to sustain me through this disease. I have to remind myself that I am only in control of my attitude and not my health. We can pray for each other Joe. Sincerely, Rod

[Joe Catalano]

Rod. I do know that some things are not in our hands and it’s good to be reminded of it.Go to her place my trust in God’s hands sometimes the fear and the exhaustion get the best of me but thank you again I do pray for all of us and of course will include you Rod in my prayers. God bless !

[Chandrawati Cahyani]

How low the hemoglobin can a patient cope with without transfusion.

[Chandrawati Cahyani]

Rod, how long have you been diagnosed with MDS

[Joe Catalano]

Rod, I would love to know who your oncologist is but I understand your reluctance to mention his name is he affiliated with a center of excellence or a large MDS hospital?

[Roderick McCune]

I have been diagnosed August 2020. I have had WBC 2.9 and Platelet 147 and Hgb 13.5 since 2012, but my regular doctor never referred me to an oncologist. I got a new general practitioner in 2019 and she referred me to my local oncologist here in Norwalk, Ohio. He saw me in August of 2020 and gave me the news of my mds diagnosis. I currently see Dr. Tim Adamowicz in Norwalk, Ohio. I am on watch and wait for now. He thinks I will become symptomatic in the next 1.5 years, but if my abc holds longer so be it. I am not yet going for center of excellence which is Cleveland clinic until my future changes more. I hope this gives you encouragement and God be with you all. Sincerely, Rod

[Roderick McCune]

I understand your anxiety regards MDS. I have had some on and off. I am currently taking Celexa for periods of anxiety and it seems to help. Sincerely, Rod

[Joe Catalano]

Rod Your numbers seem pretty good. Best of luckand thanks for getting back to me

[Chandrawati Cahyani]

Rod, your numbers of Haemoglobin, platelet are good. What bring the diagnose that you got MDS. What kind of sympton you experienced

[Amy S.]

Sorry to hear of your diagnosis. Did you have a Bone Marrow Biopsy (BMB)? BMB will tell for sure if you really have MDS or some other health issue (eg. B12,B6, iron deficiency or even viral infection has similar symptoms of low blood counts).Perhaps seeing a doctor in Center of Excellence can confirm your diagnosis.

[Roderick McCune]

I have no symptoms at all, just abnormal CBC.

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