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[km1975]

I was browsing and so happen to find this site. My dad was diagnosed with MDS approx 3yrs ago. It started out he needed transfusions every 2-3months. Now he has to get them approx. 2 weeks. He is so weak and tired all the time. They gave him an option of chemotherapy but opt out of because the doctor said he would be so sick and would probably not even make it through the treatments due to his history of heart trouble. Now the doctor's are saying that he is going to end up dying of either liver failure due to all of the blood transfusions will cause iron overload. He is on medicine to help the iron overload but it is not helping enough or they said his bone marrow will quit producing blood all together. I don't know where to turn. My dad has been so depressed. We are taking a trip to the mountains this weekend to help get our minds off everything. Does anyone have any other suggestions? I know there has to be some other treatments out there somewhere. Some kind of hope... Kim

[seniorrico]

What is your Dad's diagnosis? Is his Dr, a hemotologist? Sounds like you need a second oppinion fast at an MDS center of excelence. Has he had a bone marrow biopsy? What did it say. Get qualified help right away.
Warren Rich RAEB Dx Feb 2006 Dacogen 10 treatments

[Birgitta-A]

Hi Kim,
Too bad that your dad has MDS and heart trouble. You didn´t write anything about the results of the last blood work. What is his HGB, WBC count, platelets and S-ferritin?

You know when his blood marrow doesn´t produce RBC he gets blood transfusions and when it doesn´t produce WBC he should get Neupogen or Neulasta. There is no other medication for low platelets now than platelet transfusions but new drugs like AMG 531 are hopefully coming during spring 2008.

MD Anderson Cancer Center is perhaps the best hospital in the world for cancer diseases. If you look at their site http://www.mdanderson.org/diseases/mds/ you will find that they recommend Vidaza, Revlimid or Dacogen for MDS. They try many other drugs like Neoral (cyclosporine), Zolinza and Depakene (valproic acid - adverse effect on the liver) in MDS patients.

Your dad is perhaps too tired to participate in clinical trials othewise you coold look at the site for trials at the Clinical Trials site http://clinicaltrials.gov/ct/search;jsessionid=B67AB2F2149ED3FB465C3A88B9266046?term=MDS
Kind regards
Birgitta
MDS, Intermediate-1, dx May 2006, transfusion dependent, Desferal, Neupogen, Prednisolone 5 mg/day. Still free from symptoms.

[Ruth Cuadra]

Hi, Kim.

I'm glad you found our site. There are a lot of knowledgeable people here who are good sources of information and support.

You can get more information about iron overload from

reading the threads in our Transfusions and Iron Overload forum
joining the AA&MDSIF's Iron Overload Support Network (http://www.aamds.org/aplastic/information__hope/iron_overload_suppor/index.php)
ordering the AA&MDSIF's booklet called "Iron Chelation Therapy in Aplastic Anemia, MDS and PNH"


As Warren implies, knowing the details of your Dad's diagnosis such as his current blood counts, results of his latest liver function tests, bone marrow biopsy results, etc. will help you understand his treatment options. What medications is he taking? Is he on Exjade or using Desferal with a pump for his iron overload? Both drugs are very effective but it can take a while to reduce his iron levels.

Let us know what questions you have so we can all try to help you.

Regards,
Ruth Cuadra