Platelet count at 2000

[lkbell]

We are new to this forum. Our mother was diagnosed last year with MDS. She has been going thru blood transfusions over the past year. Also, been thru chemo treatments.
Currently she is in the hospital with a platelet count that will not go above 2000 dipping to below. She is constantly getting transfusions. She now has blood blisters/bruising everywhere on her skin and is bleeding internally. We had her moved to a larger hospital that has an "expert" on MDS. They told us yesterday that she is deficient in Vit. K so they began giving her that.
This appears very serious at this time. Anyone have platelet counts that low?
She now has a team of Doctors and they seem to be moving very fast. They are waiting to receive frozen platelets. Any words of encouragement??

[Ruth Cuadra]

Welcome, lkbell. I'm sorry to hear your mother is in such a dire situation and hope we can help by providing information and support.

In addition to Vitamin K, she probably needs platelet transfusions from matched donors. Some patients who have received many platelet transfusions can become "refractory" to platelets, that is the transfusions don't help raise their platelet count anymore. In this case the patient is said to be "alloimmunized" because his/her immune system sees the donor platelets as the enemy and destroys them. If the hospital can arrange HLA-matched or crossmatched platelets for your mother, the transfusions may help stablize her condition more rapidly.

Do you know what subtype of MDS your mother has? What kind of chemo has she had? Please let us know how she's doing.

Regards,
Ruth

[lkbell]

Back again... at this time they have done another bone marrow biopsy. The result is the same as a year ago.
You asked me what chemo she was on. It was Vidaza. We have been told that she is in the last stages of MDS.. It has not gone to AML.
Our mother was release from hospital last week. They were able to stop the bleeding. She has had match HLA platelets however this has not worked. Her platelet count would go up to 24,000 but within 6 hrs back down to 2-3000.
At this time they told us there was nothing more they could do since she has become refractory to transfusions.
She is taking Amicar to clot her blood. We have proceeded with hospice as recommended by the dr.s. She has not had a transfusion for over 11 days.
She is doing better I think because she isn't getting all those transfusions. She probably has had over 80 in the past year.
We are praying for a miracle. She is up and about eating great and seems to be getting stronger everyday. She is tired though and rest's quite a bit during the day.
Just wanted to give you an update.

[Susan L]

My thoughts and prayers are with you and your Mom. It is so hard to go thru and to have you with her is helping her for sure. Be strong. God bless

[Gloria J]

Being at home surrounded by her loved ones is probably the best medicine for your Mom right now. I hope she continues to grow stronger. Miracles do occur each day for all of us. Stay strong, and all good wishes to you and your Mom.

[bebop]

I am sorry to hear your mom isn't responding to the transfusions anymore. I know how you feel though. My dad is doing about the same thing with his blood. his platelets are kind of up and down and only had to have 2 of those so far but just since Dec 09 he has had about 50 or so units of blood. he too has that bad bruising. just nudge up against something and bam there is a new bruise. I will surely keep your family in my prayers.

[lkbell]

Thank you for all your prayers and support during this time. The toughest part is not knowing how this will all unfold.....

[AG5594]

I found this post while searching the internet. What you have described is sounding exactly like what my Grandmother is experiencing. She is currently in the hospital with a count of 2,000. When she arrived it was at 1,000. Bruising everywhere and petechiae. She had blood in her urine which has now become light. Her lungs also show fluid which they believe is blood or maybe an infection. They have her on an antibiotic for that and they also have her on Amicar to clot her blood. The doctor had told us to gather our family and he didnt know if she would make it through the night. It's two days later now and she is doing better but still not even close to being discharged. They are now suggesting to transfer her to the Mayo Clinic where they doctors excel in these areas but she is too frail to make the 2 hour trip.

I talked to the Doctor about a new medicine made especially for Myelofibrosis called Jakafi. He said he too looked into this. He wants to try it but he said it could have negative effects such as decreasing them even further. He says at this point we should try it because we have nothing to loose.


She was diagnosed with myelofibrosis a few years ago. She had a bone marrow biopsy last year and was also in the hospital after this because the bleeding wouldn't stop. Before this hospital visit her platelets were at 3,000 and she was feeling pretty good. She was getting her counts checked once a week and then receiving a transfusion a day or two afterward. She has received many many transfusions and they do not raise her counts. They also had put her on Thaldidomide (a type of chemo) which raised them but after a while stopped working. Last month they also put her on Vit K but I'm not sure that it did much to help.

I see this post is from 2010. Is there any new news or anything you can suggest to try? Our family is ready to try anything and everything as we are very close to our grandmother and do not want to lose her. We have been having many prayer sessions and just want to do everything we can for her.

[Birgitta-A]

Dear AG5594,
How sad with your Grandmother's severe symptoms. You know this forum is not for patients with Myelofibrosis but for patients with Myelodysplastic syndromes. You could ask your question about Jakafi and treatment for low platelets at one of the support groups for Myeloproliferative diseases (Myelofibrosis belongs to them) for example MPD Support http://listserv.icors.org/scripts/wa...?A0=MPDSUPPORT

Blood transfusions and platelet transfusions should have some effect even if they don't increase counts much.
Kind regards
Birgitta-A
72 yo dx MDS 2006, very severe bone marrow fibrosis, txs dependent from dx. 2010 treatment with Thalidomide + Prednisone with positive effect.

[AG5594]

Sorry about that. I saw the same situation in the previous posts and I'm just trying to do more research as I didn't know much about any of this. Thank you for the link.

[kris]

I believ ewhat you are discribing is platelet refractory. My husband was refractory no matter what type of platelet he was transfused. His count was 2000-6000. The good news is that some individuals do tolerate this with out bleeding.
Definitions:
A patient is refractory to platelet transfusions if the patient’s circulating platelet levels fail to increase by at least 10,000/microliter after transfusion of an appropriate dose of platelets. There are multiple causes of platelet refractoriness, both immune-mediated and non-immune-mediated.
Immune-mediated refractoriness is due to antibodies made by the patient that recognize an epitope on the transfused platelets, most commonly human leukocyte antigen (HLA) class I. Patients produce these antibodies as a result of prior sensitization to specific HLA proteins through prior transfusions, organ transplantation, bone marrow transplantation, or prior pregnancies.
Non-immune-mediated refractoriness is due to a process that significantly decreases the circulation time of transfused platelets. Non-immune causes include splenomegaly, diffuse intravascular coagulopathy (DIC), fever, infection (sepsis), ongoing bleeding, graft-versus host disease, veno-occlusive disease, and some medications.

My prayer to you and your family. Keep in mind no two patients with MDS are alike nor respond the same.

[Dad'sMyHero]

Kris

Thanks for your post. I have a thread in the Tell Your Story section. Please take a look if you have time.

I had a question about platelets. They told us in the hospital that my dad became refractory to platelets. He had been given a platelet transfusion and they dropped from 19 to 16. We knew this wasn't a good sign. Does this essentially mean they stop working/the spleen was taking them or something in this realm? He had infections and bleeding as well which were severe.

Thanks for your time. Prayers to you and your husband Rick. I wish you both the best!

Joe

[Neil Cuadra]

Originally Posted by Dad'sMyHero

I had a question about platelets. They told us in the hospital that my dad became refractory to platelets. He had been given a platelet transfusion and they dropped from 19 to 16. We knew this wasn't a good sign. Does this essentially mean they stop working/the spleen was taking them or something in this realm? He had infections and bleeding as well which were severe.

Joe,

Your dad being refractory to platelets simply means that he's not getting the expected increase in platelet count from a platelet transfusion. There are a few possible causes.

One is alloimmunization, which means that his immune system is recognizing the platelets and fighting and destroying them. This tends to happen more often after many platelet transfusions. The blood bank may be able to help mitigate this problem by finding platelets that are a closer match with your dad, a technique called "cross-matching".

The other possible causes aren't related to the immune system. An enlarged spleen can collect platelets, preventing them from circulating where you want them, in the blood stream. Other medicine your dad is taking might interfere with the outcome of a platelet transfusion. And even a fever can cause platelets to use up too quickly.

I think they can use blood tests to tell if alloimmunization is the problem. That's definitely a question to bring up with the doctor as soon as possible.