Low Platelets and transfusions

[Neil]

Have noticed a couple patients with low platelet counts that have been getting transfused.
Hope they had symptoms of low platelets and discussed their options very thoroughly with a hematologist!!
Not all patients with a low platelet count should get an “automatic” platelet transfusion simply because of the low count(or apparent low count). Accuracy of the actual count, patient history and the potential for becoming refractory should be discussed thoroughly.
Docs get concerned when platelets hit 50,000. They get more concerned at 20,000. Some automatically tx at 10,000.
Is this correct in every case? I doubt it. There should be a couple extra considerations before an “automatic” tx at 10,000.
They should prepare a slide and manually count the platelets in the sample to make sure of the accuracy. The equipment used is only accurate within 15,000 on counts between 150,000 and 500,000. When counts get low it takes a large number of CBCs before one can count on accuracy. Nothing like a solid history. There will be times when counts will dip very low on a CBC. Is it accurate? No way of being sure without a manual count. This has happened to me repeatedly. counts as low as 3000 send the lab into a frenzy. Manual counts have brought them back to reality. They turned out to be in the 10,000 range.
My “normal” platelet level has been in the 10,000 range for about 4 years. No symptoms other than some minor bleeding when nicked and some occassional petechiae in my mouth/throat.
Some patients can get by with low platelets IF they and their doc know their platelet history.
Remember a patient will become refractory to platelets after they receive a number of tx. This number varies between patients. Platelets cannot be transfused forever. We can increase the number of tx by getting irradiated platelets and by getting them matched properly.
If the patient does not have symptoms of low platelets like bleeding, bruising or petechiae it could be prudent to have a candid discussion with a HEMATOLOGIST or another doc experienced in treating MDS with severe thrombocytopenia to determine if the tx is wise.
Obviously those with bleeding, bruising, petechiae and continual very low counts are in need of a platelet tx.
There are a few things one can do to help platelet function. NO asprin! NO Vitamin E, NO power tools, No contact sports and be very aggressive with oral hygene. I get my teeth cleaned 3-4 times a year, brush 3-4 times a day and floss daily. These points should be discussed with your docs! Particularly the aggressive oral hygene issue. It is not for everyone with low platelets. My opinion is the aggressive treatment keeps my teeth/gums healthy BEFORE the potential deterioration takes place. My docs agree (in my case) with this approach at the present time.
We are all different in our reaction to this disease. We should not all be clumped into one category when counts reach that “magic number”. The name of the game is to treat the specific patient characteristics to maximize survival!
I have a list of drugs and other substances that have been known to impact platelet count/function in SOME people. If anyone would like a copy notify me at nnnn@comcast.net
Again, discuss these points with a hemo or other doc experienced in treating MDS with severe thrombocytopenia.

[JulieMarie]

Neil,

Thanks for the post. My mom’s platelets dropped this time I think she said they were in the 50 to 70K range last friday. I’m not sure if she is on Vitamine E but something I will discuss with her when I next talk to her.

You Know so much about MDS, and are always watching out for the rest of us. I can’t express my thanks enough to you. You are truely one special guy!

[Terri]

Neil It is so good to have you back Posting and giving us so much Info. Our Hemotologist seems to agree with you. Bobs plts go from 70s to 50s and are pretty consistant each week . He says he would not be concerned unless he saw a real severe drop. and He looks at blood slides each month and has in the past had the Plts manually counted.
Always THank you for all of your info would be lost without it

[Carrie]

Neil,

Wow! Such a wealth of information. Thank you. I’ll pass it on to my mom.

Carrie

[sarah]

Neil, thank you for your information and all the knowledge that goes with it. I too have wondered why I see so many who get platelets at different thresholds. My husband and his Dr prefer holding off getting platelets until absolutely necessary. He has been as low manually at 7000 and did not get platelets.

[Jimbob]

Neil,
As ususal you are a welcomed source of knowledge and advice.
It was important to note that the time to tx may change for the same patient. Before they were able to embolize the 4 sinus aerteris that had been cut, I was getting platlettes at 70k! After that it was 10k and now it would be 7K or maybe even less if I did not show any other symptoms.

[Kathryn]

Hi Neil, thank you so much for taking the time to post this information.

I was wondering why no to Vitamin E. My father has previously been taking it, but I am not sure if he is taking it at this time. He’s had one tx. a month or so ago. His count was down in the very low teens. It went back up, but was still low compared to the “norm”. He just finished his first round of Vidaza and at his visit to the doc. on Monday his count was down to 14. He is going back again tomorrow for another check to see if they have changed. If the count is lower, I believe they are going to do another tx. He is scheduled for his second round of Vidaza in a couple of weeks.

Best wishes,

Kathryn

[KATHY1]

Neil, you definitely have a way of putting things that is very informative and easy to understand. Before my mom passed away her doctor informed us that it was not unusual for her to be walking around with a platelet count of 13,000 (no transfusions).

Kathy

[mommachkate]

Neil,
So much we learn from you. I asked the nurse about checking the plt numbers the way you mentioned it. The answer was we did it twice. The plt still 1000. But next time I will ask the doctor for that test. Any certain name of that test? George has a lots of dark red almost black spots on his arm and leg. He has a lots of brusies too. Last week he had nosebleed for 3 days, than it stoped. Also for a few days he has these bloody bubbles on his tounge and inside his mouth. I wish I could find out , if there is anything he could try for that low plt.Kate

[Neil]

Hi Kathryn and Kate,
Vitamin E has been known to impact platelet growth/function in some patients. It may or may not be a factor in a given situation.
I was taking it for years. After I read it could impact platelets I quit. After a couple months my platelet decline leveled off. Was it a factor? Not certain. But there is info out there that it can be in some people.
Kate, “A manual platelet count” is the name of the test. It is a more accurate way of counting platelets. Remember the normal size person has about 5 liters of blood in their body. About a teaspoonfull are platelets. That is a pretty small amount to try to keep track of. Particularly when they are lower than normal.
It would seem the red, black spots and bruising are a result of low platelets.
I wish I could tell you there was a drug that would grow platelets, but today there is not much that he has not tried.
I hesitate to mention it, but there might be a drug option. It has a lot of risk. It is Thrombopoietin. It occurs naturally in the body to stimulate the megakaryocytes to split off platelets. It has been tried on a few patients, but the results have not been that good. Some very nasty side effects. The idea was to stimulate platelets much the same way Procrit stimulates red cell growth. The sucess level has not been good!
You might want to talk to his docs about it, but be aware there could be a lot of risk. It might be more of a last resort even if his docs would consider it. It could do more damage than good! My doc and I evaluated it and decided against it.

[mommachkate]

Neil, Thank you for the information, I will talk to his doctor about it. He indicated several time , that he does not recomend anything else , but supportive care. He said, George shouldn’t even get plt tx, because, his body might reject it when he might need it in case of an emergency. (Internal bleeding, etc). So, I am really so scared, and trying to find out abut something, what he could try for the plt.Best wishes Kate

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