Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Mon Nov 15, 2010, 07:58 AM
cheri cheri is offline
Member
 
Join Date: Nov 2010
Location: Tuckahoe New Jersey
Posts: 243
LOW platelets with reaction & Vidaza

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?
__________________
Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
Reply With Quote
  #2  
Old Mon Nov 15, 2010, 12:13 PM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Platelets

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
Reply With Quote
  #3  
Old Mon Nov 15, 2010, 12:55 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,505
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.
Reply With Quote
  #4  
Old Mon Nov 15, 2010, 05:59 PM
cheri cheri is offline
Member
 
Join Date: Nov 2010
Location: Tuckahoe New Jersey
Posts: 243
low platelets......

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!
__________________
Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
Reply With Quote
  #5  
Old Mon Nov 15, 2010, 07:14 PM
Fred4 Fred4 is offline
Member
 
Join Date: Oct 2010
Location: Tryon,NC
Posts: 10
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.
__________________
Fred
Reply With Quote
  #6  
Old Wed Nov 17, 2010, 07:50 AM
cheri cheri is offline
Member
 
Join Date: Nov 2010
Location: Tuckahoe New Jersey
Posts: 243
All is welll--today

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....
__________________
Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
Reply With Quote
  #7  
Old Thu Nov 18, 2010, 07:49 AM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,355
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.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Adverse Reaction to Vidaza Al's Wife Drugs and Drug Treatments 11 Fri Aug 22, 2014 05:43 AM
Father has MDS and Very Low Platelets - HELP aggarab MDS 21 Sun Sep 16, 2012 03:56 AM
Low platelets (since 04) and low mpv with bleeding DebJM78 Tell Your Story 22 Tue Aug 28, 2012 05:39 PM
Platelets low - waiting to try Vidaza knstone MDS 10 Thu Nov 20, 2008 08:54 AM
Eltrombopag for low platelets will perhaps be approved June 19 Birgitta-A Drugs and Drug Treatments 0 Sat May 31, 2008 03:08 PM


All times are GMT -4. The time now is 07:05 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2020, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2020 Marrowforums.org