first time here, my dad has MDS- how to cope?
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February 12, 2005 at 5:33 am #4063txnmommaMember
Donna.. well, I think at his next appt. I am going to go with him and see about talking to the dr. I am wanting to see about getting a classification. I looked on a website and know there are at least 4 dif. classification of MDS.
The more I talk to my dad, the more he is open to other options [which to me is a + ]
Alexa.. I think you posted my exact thoughts. The more I find out about MDS, the more scared I get, but at the same time. I NEED TO find out the info and find out exactly what we are dealing with. For my sake and for my dad’s sake.
February 12, 2005 at 2:00 pm #4064NeilMemberHi Wendy,
There are some basics that every MDS patient should follow till the docs get a handle on the particular situation and explain the options.All MDs patients are different. They respond differently to the disease and to treatments. What works for one may or may not work for others.
It is essential he has an experienced hematologist treating him. The hemo must have treated other MDS patients in order to be aware of the options available. The more patients he/she has treated with his classification the better. This is not a time for on the job training!
If transfusions (TX) are necessary Irradiated/Filtered blood must be used to prevent downstream complications. This is a must. Demand it!
He should also continue seeing his regular doc. MDS can create complications in various organs.
He should follow a healthy lifestyle outside of the MDS involvement. No alcohol, eat a healthy diet. (I avoid fats and follow a low carb diet). Get as much rest as needed. Exercise as much as can be tolerated. I also take a multi vitamin, Vitamin C and B complex.Be certain his docs agree on any of these options.There is a considerable difference in risk between
MDS patients. The only cures at this time are a Stem Cell Transplant or a Bone Marrow Transplant. These options involve some risk depending on age and the classification he has. This is an entire subject that takes time and tons of knowledge/understanding.The primary goal at the beginning of treatment is to stop the disease from getting any worse. Stop Red Cell and Hemoglobin from decreasing. Stop platelets from getting lower( is some cases higher). Keep White cells from getting too low (or too high). If there are blasts present, stop them from increasing in the marrow and stop them from getting to the peripheral blood. In other words keep blood counts stable and prevent them from becoming worse. There are drugs that may help. A drug like Procrit or Aranesp can help boost RED Cells. They work on some, not others. Steroids can help but usually have rotten side effects and are temporary. Thalidomide, Revimid, Revlimid, Vidaza, Decitibine all have their place in certain situations. They have their side effects to consider.
Are there any abnormal chromosomes? If so which ones? There are a couple that will indicate a good prognosis. There are some abnormalities that do not.
It take a bit of time to understand how a patient will progress. The more they understand the disease and potential optioms the easier it is to cope.
Again an experienced hemo and Irradiated/Filtered blood are an absolute must.February 15, 2005 at 11:20 pm #4065txnmommaMemberNeil, I am gonna keep your post. There is SO MUCH info. Thank you very much!!!
February 15, 2005 at 11:36 pm #4066txnmommaMemberNeil,
Quote:Again an experienced hemo and Irradiated/Filtered blood are an absolute must.ever since you posted this, I have done some research on this kind of blood. I have learned so much about filtered blood. Its interesting! I can see how regular blood transfusions would be getting complicated over time. Thanks for the tip..
I have been getting my little list of ques ready for my dad’s dr. I am going with him on his next appt.
Anything else I should talk to his dr about??
I have so far:
MDS specialist
other MDS patients being treated
the need for filtered blood
VidazaFebruary 16, 2005 at 12:37 am #4067NeilMemberHi Wendy,
You might ask questions on the docs track record. How have his patients been doing.
A bit sensitive, but pertinent -
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