What to expect with MDS.

[Concerned Daughter]

Hi – My mother who is 82 just recently got diagnosed with MDS and this is a new term to our family. I need some help on what to expect. A little about my mom first: she has a lot of other health problems — diabetic, congestive heart failure, breast cancer survivor, and has a form of cirrocis of the liver that is not caused by alcohol. She had a bone marrow scan a few months ago which showed she has MDS. She has had problems with her hemoglobin count being low and now has developed problems with her blood platelets. In December 2004, her platelets count was 47,000 and her hemoglobin 9.7. She is seeing a hemotologist but I don’t feel we are getting enough information. She recently went in for a blood test (1/14/05) and her platelets had dropped to 37,000; however her hemoglobin was at 10. Over this past weekend, she became light headed and confused and couldn’t even add numbers (she has always been very good with numbers). Her next appt w/hemotologist is 1/18. Is this normal? Is this a sign her platelets might have dropped more? What can be done to increase her blood platelets? Does Vitamin B6 help? What happens if it keeps dropping? What is considered “serious”? I am not sure of her risk level but I know she was at a low class – think it was the RA level. Any info would be so helpful! Thanks

[Sad About Dad]

Hello, my father has cirrhosis of liver and MDS-REAB-2 transferring to AML. One of the symtoms is confusion. Your mother has had a lot to deal with. Here is a good website on Cirrhosis of the Liver.

http://digestive.niddk.nih.gov/ddiseases/pubs/cirrhosis/#symptoms

Cirrhosis of the Liver has some of the same symtoms as MDS.

There are a lot of people on this website better to assist you with the MDS. I am sure that they will be posting soon.

Good luck to you and my prayers.

[Neil]

It will take a bit of time to find out what is actually going on. The 1/18 appointment may clarify some issues.
The following are discussion points for her hemo.
Did she have chemo for her previous cancer?
If so is she dealing with secondary MDS?
What classification of MDS does she have?
Her hemoblobin level is borderline for a transfusion (TX). They typically TX at 8.0, but her age might be a factor that lowers her TX threshold. IF she has a TX make certain they use irradiated/filtered blood. This could be important for matching her blood in the future. If the doc does not want to use I/F blood, make certain he/she tells you the reason!!

Platelets can be difficult to assess. Counts can jump around a bit. It may take a few CBCs to see where they can settle in. There are no drugs that will grow platelets. There are a very few that may provide temporary help. Prednisone for example, but nasty side effects. Vitamin B6 may be of some help. My doc has me taking it. It might be kind of supportive. The consideration with platelets is symptoms. Bruising, bleeding and petechiae are symptoms of low platelets. There are situations where a patient may be able to tolerate a low plt count without symptoms while others have problems at higher levels. If there are symptoms a platelet TX would probably take place when they get below 10,000. Again they should use irradiated/filtered platelets.
The common approach is to find out what the options are to keep her RBC and Hemoglobin (HGB) from declining. Drugs such as Procrit and Aranesp might help.
You did not mention her white count (WBC). Is it in normal range?
All MDS patients are different. We respond to the disease and treatments differently.
Platelet count can vary, due to the accuracy of the equipment used to measure them. The tolerance is 15000 on counts between 50,000 and 500,000. When counts get below 50,000 the conts can be off a bit. It takes a series of CBCs to know the real level. There are times when they get very low. If there are no symptoms, it might be prudent to have a slide made and have a manual count to verify the situation. Techs who are not accustomed to seeing low counts tend to get alarmed when they encounter them.
Low HGB can cause fatigue/confusion. Red cells circulate oxygen throughout the body. It can have a noticible effect.
If you included your e-mail address in your profile I’ll send some info that is too long for the Forum.

[Concerned Daughter]

Thanks very much for the points of discussion with the doctor. I am going with her today to her family dr. She has had numerous TX in the past as her hemoglobin has been up & down over the last few years. It was just recently (last fall) that she was complaining of being tired & she had bruise marks on her arms. It was just the end of last year where they DX her with MDS. She has RARS classification and has been having problems the last few weeks with nose bleeds. She hasn’t had a platelet TX yet…I heard those only last a few days. Is that true? Also, she never had chemo or radiation when she had breast cancer (just had a mastectomy) so that didn’t cause MDS. She can’t take certain drugs due to her other health issues. Why is it important to have filtered blood when she has TX? I really appreciate all the info….sounds like you are one of the experts on this disease. Thanks for your prayers too!

[Concerned Daughter]

By the way, I will send you my email address privately as I don’t want it to be public. I don’t know her white blood count yet…I will ask the dr. today. Also her risk score was <5% ..

[Neil]

Platelets only live about 5 days, maybe a little longer in some cases. They should be I/F also. Eventually one will become refractory to platelets. One can only have X number before they do not function any longer. The I/F platelets will not have any white cells in them. This will allow a match for a longer time before becoming refractory. I have had 2 patelet TX over 8 years. Only when surgery was necessary.
TX will not cure MDS but will relieve symptoms and help overall health. The I?F process removes leukocytes and reduces the risk of complications. Irradiation reduces the risk of graft versus host disease and filtering reduces the risk of becoming sensitized to proteins in the transfused blood and reduce the risk of transmitting cytomegalovirus.
It also helps to prevent the build-up of antibodies/antigens that may make it more difficult to locate blood that will match in the future.
RARS is one of the “better” classifications of MDS as long as they can keep her red cell up, manage platelets and white cells. TX is a common means of handling the reds. Have a friend who has had over 400 over the last 15 years.
Seeing her primary physician is very important. The possible complications of MDS on the rest of the body cannot be overlooked.
It is also very important to have a hematologist experienced in treating MDS!!! Particularly RARS.
There has been a huge amount of progress in treating MDS over the last year or so. The hemo must be current on the current knowledge. This is no time for on the job training.
In some cases docs will be reluctant to use I/F blood due to age, but it is rapidly becoming the standard.
There is a product available that may help. It Nosebleed QR. Available at Wal-Mart and most other drug stores. I keep it handy just in case.

[Concerned Daughter]

Thanks again Neil for all the information….I have a question for you…are you a Doctor? I am amazed at how much you know and the terminology you use!! My mom is at her hematologist now and we should know more after my sister gets answers to the questions I gave to her. My mom’s family doctor saw her yesterday & is very concerned about her liver. He feel her cirrhosis of liver plus the MDS is very bad and her liver might be failing. He said something about it might have been releasing ammonia and that caused her confusion last Saturday. He ordered her an MRI to see if she might of had a mini stroke and some additional blood work to check if for other things. Also, I wanted to tell you I am sorry about your mother not doing well. I will keep her in my prayers. It is odd that you mentioned she has multiple myloma…my mother’s twin sister died of that 7 years ago and her other sister died last year of liver cancer! I wonder if all this is connected????

[Neil]

Am not a doc. Just 8 years of reading about MDS and discussing the disease with other patients.
We are not certain mom has multiple myloma. It is one of several possibilities. A BMB is the only way to confirm wahat it is and that is not going to happen.
Hope you get a good report on your mom and they can get control of all that is going on.
Basic health outside of MDS is very important. A patient must do all possible to maintain a healthy lifestyle.

[Author]

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