platelet transfusions

[bety]

Hi friends,
At what point are platelet transfusions considered necessary? How many units are given at a time? How fast do they tend to decline after a tx? My chief concerns are bleeding in vital areas and becoming refractory to the plts.
I would very much appreciate your input.
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Husband 87, dx 7/03, Rars, now pancytopenia, wbc 0.3-0.7, platelets range from 6,000 to 45,000, and hgb from 5 to 10.1, depending upon tx history.

[pigduck]

I was once told if it was 20 (‘000) and below then it would be necessary.

[Neil]

Hi bety,
The threshold for platelet TX varies from patient to patient.
As a rule a doc will get concerned when platelets reach 20,000. They almost go into automatic TX preperation at 10,000.
There are a number of factors to consider before starting a TX.
Is the platelet count accurate? At one tome I had a count of 3,000. The staff was ready to send me to the TX center ,but my doc ordered a manual count. A slide was made and the count was actually around 10,000.
Are there any symptoms of low platelets? Some of us hover around the 10,000 range with no symptoms. Others present with bleeding, bruising petechiae at 50,000. Much depends upon the quality of the normal platelets included in the count.
In my case I have a number of megakaryocytes that produce many many abnormal plts. They are identified, killed off and flushed in a normal process.
At the same time I have some megakaryocytes that produce some normal platelets, in sufficient quantity to handle my clotting needs.
I have had to have a plt TX when extensive dental surgery was needed and when I had a hernia repair. Dental required a six pack. The hernia required 2 six packs.
I have noticed another situation over the years. If I get nicked or banged up enough to produce bleeding that is minor or controlable my platelet count will go up. I had a needle biopsy on 10/15. On 10/18 my plt count was 22,000. The previous count was 10,000. I fell and banged up my nose. A couple days later plts were 23,000. Last January I got a respiratory infection and was movig toward pneumonia. Had a anti-biotic and albuterol. My plts went to 97,000. Two weeks later they were at 9,000.
Some of us have enough cells producing normal plts that compensate for bleeding episodes. Others may not.
One of the lessons my doc taught me is to avoid panic. Take a few minutes and think out the situation. Is a run to the ER necessary?
Since I am on Aranesp I get a CBC and injection every 3 weeks. At one time while on a clinical trial I had a CBC every other day. All of my counts since 1998 have been recorded on an Excel spreadsheet and a graph. Have another chart/graph that lists my counts as of June 15 of each year. This is a very easy way to see if a trend is developing and to track long term counts.

Hope I helped. Since we are all so different in our responses not all situations can be compared. At the beginning I wanted to be very aggressive and try all the drugs available. My doc reined me in and explained how counts may vary from week to week. Since I was not in a high risk situation he kept a cool head and a wait and see posture. It has worked for over 10 years. (The question is: how much longer will it work)?
Other patients have different sets of complications. Some may benefit from this or a similar approach. Other patients that are high risk would probably need a more aggressive approach.

[bety]

Dear Pigduck and Neil,
Thank you both for your input. Pigduck, I was sorry to hear about your father, particularly since he was so young.
Neil, your detailed, personal description is very helpful. I tend to panic when I see a fresh copy of Ed’s cbc report. I first study the plt count and try to determine when the next plt tx should take place. He received his last plt tx a few days ago, when his count was only 6,000. Normally, our hematologist is quite conservative about ordering a tx., but Ed had some nasal and gum bleeding that we could not control.
Three days after the plt tx, his count dropped to 28,000. From my reading yesterday, most plts do not last more than 9 to 11 days. My chief concern is that Ed may become reactive to plt txs, and then we may be in serious trouble.
You have given me considerable strength, so that I do not panic so easily and try to take a more wait and see attitude. Lately, my anxiety level has been quite high, but reading about your experience has dropped the level a notch.
Thank you for your help; it is deeply appreciated.
All the best, bety

[Neil]

Hi bety,
Did Eds doc ever do a manual count when his counts got low and there was no bleeding?
The irradiated/filtered plts and single donor plts (if he gets more than bag at a time) will lengthen the time TX will be effective.
Did you ever talk to his doc about a clinical trial on Lonafarnib?

[bety]

Hi Neil,
Every time Ed’s counts have been very low, he has had some bleeding, unfortunately. Each time he has ended up in ER or the hospital, where they do a manual count routinely.
I’m glad to hear that irradiated/filtered plts and single donor plts will lengthen the time Tx will be effective. Initially, this was not done until I read your posts and then I requested the change.
Does the clinical trial on Lonafarnib require a Bone Marrow Biopsy? Ed refuses to have another one and cannot be convinced otherwise. There are trials with AMG 531, which require the BMB. Again, he refuses to apply. Also, do they have an age limit on the Lonafarnib trial?
Thanks again for your suggestions….they are not only appreciated, but very helpful.
All the best, bety

[Neil]

Hi bety,
There is no mention of a BMB requirement for the Lonafarnib trial.
There is a lot of info in the Fall 2006 edition of The MDS News. All of the eligiblity requirements are listed.
you can contact the MDS Foundation at 1-888-813-1260 for info.
Trials in your area are at New York Presbyterian, contact is Dr Eric Feldman and New York Medical College, contact is Dr Karen Seiter.
Its likely there are more that are not listed in that issue.

[bety]

Hi Neil,
Thank you for your suggestions. I called the MDS Foundation today. They will call me back re eligibility. I will keep you informed.
All the best, bety

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