LOW platelets with reaction & Vidaza

[cheri]

Hello all~
I had a bad reaction to platelets on Thursday--102.5 fever within 1/2 hour of getting them; post cbc was platelets @ 9K! Super scary...overnite in hospital with all of the precautions/blood tests/ preventative antibiotics...thought my end was near, as all happened so fast! Thurs nite platelets transfusion only took me to 21k...WBC .9, Hemo around 9...shots of Neupogen and Aranesp...

Question: I have completed my 3rd round of Vidaza, and am now on standing order for platelets 2xweek. I know it takes minimum of 4 rounds of Vidaza to work, but wonder if I can withstand it? Has anyone had such lows and rebounded for the next cycle...or had a hard time for the first 3 cycles, and seen magic after the 4th cycle? My platelets have been as low as 2K and I was still walking around, not bleeding.

Just found out this am that I am supposed to have a transfustion and that they (Philadelphia!) can't find my special HLA matched platelets....what am I supposed to do?

[Birgitta-A]

Hi Cheri,
You know they will have to wait with the next Vidaza cycle and hopefully give you a lower dose. There is special info about how to give Vidaza when the counts are very low. You can find it if you Google Vidaza.

Very good that they give you Neupogen and Aranesp .

Your platelets seem to function very well when you can have a platelet count of 2 without bleedings.

Hopefully they can ask clinics outside Philadelphia about platelets for you!
Kind regards
Birgitta-A

[Neil Cuadra]

Cheri,

Doctors have a lot of leeway about when to order platelet transfusions (how low to let you get), but I'm sure you'd like to know that platlets will be available if your need increases. Your hospital's blood bank may have already put out a call for the platelets you need. My brother-in-law got a call from our blood donor center that someone who matches him needs platelets, so they've had him come in to donate platelets for that patient several times recently.

Patients rarely think to call the blood center to ask about their special needs. We all tend to hear about the blood supply second-hand from doctors or nurses instead, but there's no reason not to give the blood center a call directly and let them know that you're concerned.

[cheri]

Good news! Platelets will be here for the early am! Agnst ridden day, though.

Well, thanks for that info...never occured to me that I should contact the blood bank directly. I have several friends who would donate on my behalf, but since my platelets are HLA matched (whatever that means), I don't think we could do a direct donate. I am dealing with a small hospital in South New Jersey that goes to Phila for all special blood products. I need irradiated blood as well....apparently, I'm special

Knock wood, I haven't had any serious bleeding issues...
I will mention the Vidaza lower dose to my doctor when I see him....
thanks so much for your help and support!

[Fred4]

Talk to you doctor. My mother also went thru the problem with platelets. He can order Solumedrol(spelling) prior to treatment. Also, if you are having a problem 2 tylenol and a benedryl should bring things in order. You may also want to request platelets in your type. We had a problem with O+ platelets. She was B+. I know it should not make a difference. However, you are getting something that does not belong to you. Your body may know that.

[cheri]

Got my platelets and a nice bump (up to 66K) too...turns out they had held from 21K last Thurs nite to 14K yesterday morning....I thought for sure I would have been in the single digits. My other counts rose a bit as well:
wbc up to 2.1, HGB 9.4 pre/8.4 post platelets. So I'm here to fight another day! Hopefully, my counts tomorrow am will show further progress....

They do pre and post transfusion cbcs--seems like hemoglobin tanks alot post transfusion--2nd time this happened....could there be a dilution factor from the saline/platelets?

Fred, I agree--I am going to pay more attention to the blood type and my # bumps, because all along I have thought that some units are much more user friendly...and yes, I am now on the Tylenol/Benadryl regime!
Thanks for your support eveyone....

[Marlene]

Have your doc request the freshest blood products. Sometimes, you end up getting products that expire that day. There's been quite a bit of discussion in the past on this topic. It may not be important for someone who's getting transfused just once or twice, but it does make a difference for those getting multiple transfusion.