My Fathers story w/ MDS 5q minus

[lablue]

Hello to all,

I wanted to share my fathers experience since being diagnosed with this disease in 2005. There have been several issues he has had to deal with since that time.

At the age of 74 my fathers red blood cell count dropped dramaticly along with his ferritin count (iron) climbing rapidly. He required transfusions regularly which progressed to the point of needing 2 units of blood every 2 weeks until the drug "Revlimid was approved by the FDA and made available to him in April of 2006.

Once he started taking the "Revlimid" it was a godsend to be sure as his red blood cell count quickly went up and he did not require transfusions at that point.

There are issues with Revlimid to be sure. One of them being that the patients white blood cell count drop very low which makes the patient very susceptible to colds, viruses, infection, etc. and colds or flu can last much longer and be much worse which was the case for my father. A cough would last for weeks and a flu he got in 2008 was devistating as he needed to be admitted to the hospital for IV fluids.

In my fathers case the Revlimid turned on him. He was coming down with several chest colds and had inflamation in the chest. His doctor had scans done as Revlimid is suspected to bring on "Interstatial Pneumonitus" (Infection in the chest/lungs).

In early 2009 the doctor had my father stop the revlimid to see if the symptoms would subside. He was off Revlimid for about 4 months and was able to go with no transfusions for that period of time but his counts did drop to borderline.

Another chest scan was done and it appeared the Interstatial Pneumonitus subsided so the Dr. put my father back on the Revlimid. This time the drug was not helping as much as his red blood cell counts were not going up as well.

My father developed more colds and chest coughing and discomfort. By the time it was fall of 2009 my father was struggling with a great deal of shortness of breath from the blood not being as stable and he was getting more symptoms of the Interstatial Pneumonitus.

Things progressed downward until new years eve where the doctor had to take my father off the Revlimid and my father spent new years eve day in the hospital getting a transfusion.

The doctor started to give my father procrit at this time as it seems my dads production of erythropoietin (what procrit is used to supplement) shut down and the bone marrow was inhibited from being able to make red blood cells with the revlimids help. The Revlimid had quit working and even turned on him to make him more ill.

From Dec. 31st 2009 on my father required a blood transfusion every 2 weeks, occasionaly every 3 weeks, and one time back to back weeks.

The doctor put my father on 20 mg of Prednisone to help keep his blood more stable and to not require more transfusions than what I stated above.

The doctor also put my dad on Exjade to help reduce the ferritin counts. Unfortunately even with a smaller dose my dads liver and kidney enzymes spiked with teh Exjade so he needed to stop that.

The next step was to try Vidaza. The original plan was to start Vidaza in April but my father was hesitant and the enzymes dropped back to normal but my fathers resitance to "Chemo" was an issue.

My father finally started Vidaza in late July 2010. He began getting shots 5 days a week once a month then. There were signs of the Vidaza in his system from what the doctor had said and we were told it usually takes 3- 4 cycles to see if the drug was working to the patients benefit.

I'm happy to say that my fathers last blood transfusion was in September and he has not required one since as we get ready to celebrate Thankgiving my family has something to truly be thankfull for.

The way the drug works is it seems to cause a rebound effect for the red blood cells, white blood cells, and the platelets. The doctor said he expects that my fathers red blood cell counts would stay above 9.0. So far his RBC has gone as low as 9.0 in October the week after his shots but rebounded 2 weeks later to well over 11.0.

This last month his RBC didn't go below 9.6.

I can tell you that my dad was quite nervous after his blood count went up so nicely to see it go down as part of the cycle since the thought of the drug not working is a scary one but the doctor explained that is part of the action of the drug and that all signs pointed to Vidaza working for him.

As part of the treatment my father still gets procrit shots each week and now gets a testosterone shot every 2 weeks.

We have no way of knowing how long the Vidaza will work as well other aspects of his health that could be affected by all the transfusions, medications, etc.. but I can say that we are all greatfull that the Vidaza is working and that his doctor and nurses have been there for him over the years for treatment and support.

I wish the best to all this holiday season and hope that everyone who suffers from MDS or any disease is able to be helped as much as my father has been.

[ann]

I am so thankful for you and your family. I pray that the Vidaza will continue to do its job. My husband has been on Vidaza since August, 2009. He gets the treatment every 28 days for 5 days. Also shots of procrit. We pray that it continues to work for your Dad and for my husband. Have a very Happy Thanksgiving and God bless.
ann

[lablue]

Ann,

Thank you so much. I hope that your husbands Vidaza treatements continue to work as well.

This years Thanksgiving there was truly something for us to be thankful for!

Happy Holidays to you, your family and all the people out there fighting the good fight.