At a loss…..

[KLG]

Hello everyone. On yesterday I came across this message board in an effort to found out more about MDS. 4 weeks ago my father was diagnosed with this disease and has rapidly gone down hill since. Some days are better than other but he has lost a great deal of weight (he was never a large man) and has become increasingly lethargic. He has lead an incredibly active 64 years and it pains me to see him suffer.

Just moment ago I was told that he will need a blood transfussion. I’m at a complete loss. I’m packing up my belongins now to leave my office but wanted to at least come here to ask if anyone can tell me from experience what this means. How helpful or harmful this is, and what should I expect as a result.

Any comments will be most appreciated.

[Neil]

This can be the beginning of a long journey.
Much depends upon his classification of MDS and his risk level.
As a rule a patients Red and white cells along with platelets are affected. A low red count will account for the fatigue. Transfusions and drugs such as Procrit and Aranesp might boost his red cell counts.
It is very important that he be treated by a hematologist experienced in treating MDS!!
If you read over some of the materials on the home page for this site you can get a lot of info quickly. The more info one has on MDS the easier it is to understand and cope.
There are 2 very good facilitues in your area for treating MDS. The NIH in Bethesda and Johns Hopkins in Baltimore.

[maueenh]

KLG,

My father was diagnosed with high risk MDS about a month before your father. This forum has been a good friend during a very difficult time. Everyone is informative and compassionate. Neil has given you good advise. Once you determine his classification that will guide you as to what treatments are available. My father felt very similiar to the way you have described your dad and today is feeling good. He is responding to treatments but had several transfusions in the interim.

Maureen

[Caroline]

Hi KLG:

My Dad was diagnosed with MDS 4 years ago. He is 80 years old. Last fall we found out that he has CMML now and also Chronic Kidney Failure. Last week we saw the kidney specialist and he told us that Dad only has 24% of his kidneys function. Last Christmas he only had 8%. He had a Kidney/Leukemic Episode and a Bowel infection which nearly killed him. It took from October until January to get him stablized. In and out of hospital every couple of weeks Dad has had days where he sleeps around the clock and yet today he told me that he is planning to join his old bowling league again because he has been feeling so well lately.

MDS and its related diseases are like a roller coaster. One day the patient can be up and at the drop of a hat he can be down but he may not stay there long. My Dad has only ever had to have one transfusion….one year ago August. At the time that they gave him the transfusion they told us that within months he would be on Dialysis. That has not happened. That doesn’t mean that he will never get Dialysis but right now he isn’t a candidate in any way. Instead Dad was started on Procrit for the hemoglobin and then later he was switched to Aranesp and it has worked to increase his counts for the Leukemia and the Kidney Failure as well.

My Dad, like yours, has also always been active and he has lost alot of weight as well. It stopped falling off a couple of months ago and he is able to maintain it with several small, healthy meals a day. Three full meals is too much for him so we divide his food over the day. He also loves to eat when there are people around so we invite him and my Mom over for dinner alot and we ‘drop in’ at their house at dinnertime alot. Or one of the kids goes over and invites themselves for the meal. It boosts Dad’s mood and makes him feel like eating.

Your Dad is getting a transfusion because his red cells and/or white cells and/or platelets are out of whack and need to be boosted. By the sound of it, the fact that he is so tired says to me that it is his red cells or hemoglobin that need a boost. My Dad’s hemoglobin went from 99 to 115 after only one transfusion and he looked much better within a day or two. His skin was pink and he was much perkier. Then his hemoglobin dropped and he was given erythropoietin shots ever since. First Procrit which maintained it at 100 and then Aranesp which not only boosted it through the roof, it also helps his kidneys so we have stayed with it. I give him a small needle every Friday morning and he has been much healthier looking since we began at the end of January. All of his doctors have even given him a ‘holiday’ of three months instead of seeing him every two to three weeks although they still insist on monthly blood tests.

People with MDS can live a very long time. Make sure that your Dad sees a specialist in MDS like Neil said and also make sure you do the best you can to keep his immune system healthy. LOTS of information on this Forum points that direction. Take a few hours and READ…READ….READ. I am sure once you have read this Forum from front to back, you will have a better understanding of the disease and what you can do to help your Dad.

Best Wishes,

Caroline

[chuckk333]

Caroline: you mention keeping the immune system healthy. What do you do to do that?

Chuck

[KLG]

Thank you for all of the information folks. As Neil mentioned. We are trying to get him into NIH. The only problem with that is he’s still being cared for at our local hospital so trying to get him enrolled into the progam at NIH may take some time.

His transfusion went well on Friday. He says that he feels a lot better. his RBC have gone up yet his wWBC are still extremly low. To make matter worse, for some reason his temperature will not stablize. This was actually going on before he even got the transfusion; constantly going from normal to around 103.

[Caroline]

Chuck,

I just noticed that you are a snow skier. GREAT !!! My Dad was a downhill skier as well. He grew up in Austria and skied the Alps. He taught me to ski when I was only 3.

What do we do to keep Dad’s immune system healthy? Well, we tried to get him on the herbal path but since he only has 8% Kidney Function, the medical people as well as the natural health advisor we saw strongly recommended that we NOT go that route. We can’t introduce anything new to Dad’s system food or plantwise since everything passes through the kidneys or liver and who knows what damage we could do? Dad cannot afford to mess around with the little Kidney Function he has left. So, to keep him as healthy as possible we make sure that he eats according to Canada’s Food Guide…food from every group at every meal. We never overload his stomach and give him too much to digest at one time. That way he never stresses one part of his body. He only has one bottle of beer a day..with his supper as is customary in our culture. His Oncologist says that is fine. His Kidney Doctor doesn’t like the idea but he figures that if Dad gives up everything he loves, he will be sad and he will FEEL sick. That isn’t good for the system and soul either so he has said ‘Go Ahead.’ Also, Dad takes supplements as they are needed. ie. He takes iron pills now because of Anemia. He exercises as much as he can within his limits. If he is tired, he lays down. If he is energetic Mom takes him out shopping or visiting or he goes for a walk or out in the garden. He eats alot of fruit and vegetables and goes easy on meats and sugary foods. I suppose he just takes everything in moderation and doesn’t overdo it in any one area.

Another thing we do is spend alot of time with him making him laugh. Instead of watching morose or serious television shows with him…and he watches alot of TV lately…we watch funny shows with him and get him in a good mood. When he spends alot of time on his own, he gets down and it is hard to bring him up. That is understandable. He doesn’t even like it when my Mom goes out by herself here and there a bit. So, when we know that Mom is going shopping one of us goes and ‘drops in’ for a visit to prevent his spirits from dropping.

I am not a good person to ask about physically keeping a person’s immune system healthy because of Dad’s medical situation…sounds wierd eh? Alot of other people on here have a protocal that they follow which works well for them. In our case, we can only work within the limits that we have. So far, so good though.

Oh yes, Dad also eats a little tub of Activia yogurt every day whether he wants to or not. This particular brand of yogurt keeps the bowels free of those nasty germs that can grow and take over and reak havoc on the system.

I wish I could be of more help. If you are interested in supplements, herbals, or Chinese methods, read back to other posts. There are some very interesting ways of helping the immune system that people are using with great success.

Best wishes

Caroline

[chuckk333]

Thanks caroline,,

I am entering a study of the efficacy of curcumin & gingerol on treating MDS. It seems to have no side effects and just may slow down the progress of the disease

[Caroline]

Chuck,

Keep us informed as to how well the study works.

Best Wishes,
Caroline

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