My Grandpa and MDS

[Justin Marshall]

Hey guys,

I wanted to thank everyone for this wonderful site, I can’t overstate how wonderful the information here is, and how its helped family. My grandfather just got diagnosed with MDS, and its been a scary time for my family. I had a question for you guys.

My parents are taking point with my Grandfathers care, and I don’t have his full blood work in front of me. My Grandpa is 88, he is also very underweight. He was just diagnosed about 5 months ago, and his last blood transfusion was end of May. His hemoglobin is 8.8(it was as high as 11 after the May blood transfusion). I know on his blood paperwork, it listed his blast count as normal, but I don’t have the exact number. I also know he has low platelet counts.

My Grandpa has chronic fatigue, and desperately wants another transfusion(because after his last transfusion, which was his 2nd transfusion, he felt a lot better). The issue is the insurance won’t pay for it until his hemoglobin falls below 7. I have read that having too many transfusions can lead to severe complications. I know the doctor has told my Grandpa he would authorize it if his insurance would pay for it. My question is, if it takes 3ish months for his numbers to go from 11 to less than 7, is there anything we can do to help him with his fatigue? If money was no objection, would him getting more frequent transfusions be ok for his health?

My last question is, based on the information stated, can I figure out what risk category hes in? Even as a adult it frankly scares me that he has this awful disease. I really thank everyone for this wonderful site, and may God bless you all.

[garsch]

Justin, I am 66 and was previously diagnosed with MDS RCMD with q20 & tri 8 chromosomes bad. My platelets were low and further bone marrow biopsy identified the disease.

My Dr started me on Vidaza chemo for 5 days then 21 days off for 6 months the first year. The chemo affects everyone differently. The first series for me just bought on some nausea which medications are available. My Dr thought it was controlled but blood counts declined and a bone marrow biopsy showed the bad cell were still growing. Transfusion at that time were not required.

My Dr tried another 5 months of Vidaza with no change. After the first chemo treatment I started requiring monthly transfusions. As time went on the transfusions went to bi-weekly. My iron levels increased to the point I needed to take additional very expensive drugs for iron reduction. I was fortunate my insurance paid for them although many hospitals have programs for people that insurance does not cover.

Everyone is different for Hemoglobin levels. For me when I would get below 9.0 I had trouble getting up stairs, standing in the shower, lifting anything and always fatigued. The Dr normally decides when Hemoglobin is required for each patient and he sets the level for insurance. I would make sure your grandpa is seeing at Doctor at one of the MDS centers of excellence. They also have a shot they can give you to increase Hemoglobin, they are expensive and never worked for me but I have heard from other people they work.

After my second series of chemo treatments my Doctor tried 10 days of Decetimin chemo which also had no success controlling the cells so at this time I was getting weekly transfusions and he suggested I get a stem cell transplant using a donors cells. There is a national directory for donors but I found my 60 year old brother was a match and moved forward with the procedure.

I was in the hospital for 29 days in June of this year. I had two different types of chemo for three days and total body radiation prior to the procedure. Everyone responds differently to these types of treatments. I believe age, current health, and others factors determine treatment. The transplant was like getting a platelet transfusion. I had stomach and intestinal problems for a week afterward but everyone’s response is different.

Since I have been home I have not required a transfusion or platelets and my blood is close to getting back to normal. The Chimerism report shows I am 100% on my brothers cells and an upcoming bone marrow biopsy will determine if any bad cells still exist. I can only pray for success.

I hope this story helps you with your grandpa. I think the most important factor for him is see the right Dr, pick one that has a good track record treating MDS and a hospital that has experience in these areas. See centers of excellence on the MDS website.

Garsch

[Author]

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