Platelet effectiveness

[Dottieb]

Hi Russ, John’s platelets at the beginning of 4th round were 203, wbc 6.0 and hmg. 8.3. Todays cbc showed platelets at 16, a rise of 7, wbc 1.7 and hmg 6.7. Tomorrow will be another day of rbc transfusion and Dr. says platelets also. I think I would rather hold off on that and see if they rise on their own. John felt very well today although a little tired, I can understand that. No more blood from the nose! And yes, he does take neupogen. Dottie

[Russ]

Dottie, that was quite drop in PLTs – good to see they came up in just a few days and no more bleeding. Can understand the tiredness with HGB at 6.7 but good he’s feeling well. The PRBC tx should help a lot. I end my 3rd round Dacogen today but will not have the Neulasta – instead opted to wait until seeing the doc on Monday and possibly try Neupogen hoping that is milder. Having the Neulasta shoot my WBC up to 50+ seems like a waste of cells since they don’t last very long. Regards,

[Dottieb]

Hi Russ, Had rbc tx today, the count went down from 6.7 to 6.4, however no platelets as the are on the way up….to 30. Yes the platelets really have taken hefty dives on all cycles of dacogen. Seem to be following a pattern though as the numbers are almost exactly as last months count. wbc on the way up also 1.9. Now if only the rbc’s would climb a little I would be a happy camper. Dottie

[Aleksandra Poland]

Hallo,

My Mom got her first transfusion last week (with 43.000 own platelets in blood – but the transfusion was for the platelets only) and I wonder, if this was necessary – your counts are much lower? Besides, she got the whole blood transfusion, 2x200ml, from two undefined donors. Additionally, she received cortisone to suppress the organism reaction to the transfusion.

So I read your related posts with great interest, but I’m slow deciphering the abbreviations. Could you tell me, what “HLA matched” platelets are?

As far as I understood, you get the platelets in the form of the specific preparat, not directly with blood, and often from selected donor? Could you write few words about it for me?

Many thanks, Aleksandra

[Neil]

Hi Aleksandra,
with many of us,platelets are difficult to understand. One person can have a platelet count in the 70,000 range and have bleeding and bruising problems, while another person can have counts in the 10,000 range and not have any symptoms. If your mother had bleeding and bruising problems the platelets were necessary, if not you might ask the doc why they transfused her.
Some of us have some cells (megakaryocytes) that are abnormal and produce thousands and thousands of abnormal platelets that the body identifies, kills and flushes out thru the spleen.As a rule these abnormal plts are not counted. At the same time there are a few normal megakaryocytes that produce a small number of normal platelets that are just enough to provide sufficient clotting. There are so many differences between patients it is difficult to understand at what point there are enough platelets to handle the bodies needs.
The Danazol and Prednisone are steroids that provide an “artificial” increase to her counts. There are cells in a persons tissues and blood vessels that the drugs release into the blood stream where they are counted. The cells were not counted while in the vessels and tissues. The unknown factor is for how long these cells will be released and how long they will last.
A easy to understand explaination of HLA matched platelets involves matching a patients cell characteristics with those of the donor. The closer they match the more effective the donors platelets will be and the longer the patient will be able to receive the donors platelets. There can be many donors who can provide a match, but they should transfuse platelets from only one of them at a time—if possible.
You might ask the doc if cortisone is a good choice for avoiding a reaction. It may be a bit extreme. Most of the time a combination of Benadryl and Tylenol is effective in preventing side effects fron the transfusion. A lot less expensive than cortisone.

[chuckk333]

How are the Human leukocyte antigen (HLA) determined? Is the test for donors and recipients difficult or expensive? If so finding a donor that matches may not be so easy.

[Neil]

Hi Chuck,
HLA are proteins on most of our cells. They help identify tissue type.
Our immune system uses these antigens to determine which cells should be in a given body and which should not.When the transfusion team looks at the match they compare how similar the tissues of the patient and the donor are to each other.
Not sure of the cost, but do not think it is prohibitive. When looking at a stem cell transplant the testing may be more extensive and thus more expensive than for platelet transfusions
The following link has more info
http://en.wikipedia.org/wiki/Human_leukocyte_antigen

[Aleksandra Poland]

Neil, thank you, it’s very helpful what you write – I keep on collecting the information, and forward it to my family in Poland, hoping for some progress in the therapy. We really know so little; the illness itself is extremely rare, and the doctors in Poland are not the most content with sharing any professional information with patients/families. But I don’t want to complain – it’s just that Mom is back in the hospital, with the severe itchy rash that related to the transfusion and I find it so hard to trust the doctors there…

Do you yourself ge the blood irradiated for the transfusion? This was the response of the doctors to our request of HLA check – no, next time she’ll just get the irradiated blood instead (???)

[Neil]

Hi Aleksandra,
I have had 2 platelet transfusions. Both were irradiated and filtered. At this time I do not need any packed red cells. My doc specifies I/F blood for all of his patients. Have not used since I get so few platelet tsansfusions. If they were to become more frequent we would look at that option. I have a couple people who would donate platelets for me. They would be chacked for compatibility if I need them.

[Aleksandra Poland]

Neil, it’s great you don’t need the transfusions at the moment. I’ll try to push it somehow that Mom’s next blood is irradiated/filtered. My sister has actually the same blood group, so maybe there could be a HLA made for her as a donor? She gives blood once month to the hospital every month, so maybe it would be possible as well to store it for Mom, just in case?
I’ve been also thinking about the cord blood – I’m expecting a baby in May, maybe it would be possible to use my cord blood somehow, store it or give it to Mom, if it’s compatible? I saw few topics on the forum about it; I have to read more.

My best wishes, Aleksandra

[Naomi]

Aleksandra:
I asked the transplant doc about a cord blood transplant when my daughter was carrying twins. He told me that it could not be used for me. She has my blood, her father’s and then add her husband’s into the melee and it would not be good to use the twins cord blood for me.
Maybe some other doc would look at it differently and it would be worth a try.
I don’t know if her age would make a difference in Poland, but would be a consideration in the US
Naomi

[Aleksandra Poland]

Hallo, Naomi, I’m so glad you wrote.
I’m sorry the transplant was not possible for you, it seems like they don’t use twin cord blood for, due to the lack of existing data on the possible complications, at least that’s the only info I found.
Of course there is a big chance that the blood will not match – but if it’s only possible in our hospital, we will definitely donate the blood to some research foundation. And maybe with lots of luck my Mom could have some use of it? Yes, that’s right that in her age this is already a risky thing. I really must talk to somebody professional about it, I’m getting crazy with all the questions and being so far from Mom (I live in Austria, my family is in Poland) I can not really do anything. Just this research, that brings so much confusion. I wrote to the doctor in Wienna (local Excellence Centre) and it would be so great to talk to him…

I’m not sure if this is of any use for you now, but I found some interesting data to start with, maybe somebody else could use it. The links are:

http://www.acor.org/leukemia/cord.html
http://www.sciencedaily.com/releases/2001/06/010614064016.htm
http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Undrstnd_Treat_Opt/Lrn_BMT_Cord/index.html
http://www.marrow.org/PATIENT/Undrstnd_D…d_Tx/index.html
http://www.marrow.org/PATIENT/Undrstnd_D…y_Tx/index.html
http://www.marrow.org/PATIENT/Undrstnd_D…cess/index.html

I found also one extremaly positive article on MDS treatment options, the address is: http://www.curetoday.com/currentissue/features/mds/index.html
Something to read, when it feels hopeless.

Goodnight and best wishes, Aleksandra

[Author]

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