Platelet Counts and Neupogen/Neulasta

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• April 15, 2008 at 6:11 pm #20590
  Alice S

  Participant

  Hi Everyone

  I need your input regarding the effect of Neupogen/Neulasta on platelet counts. (I mention both as I could not verify which of the two my mother received as she ‘bailed’ out of hospital before I got there to check her file! She says she thinks she received Neupogen.

  Briefly, my mother was hospitilized last week and given ‘neupogen’ injections daily. Her platelet count which recently hovers in the 60s started dropping daily at an alarming rate, today it was only 20! (First injection last week Wednesday/Thursday)

  The Doctor said it was the ‘infection’ but she has been hospitlized with infections countless times and it has never affected her platlet count before. Today the same Doctor admitted that it could be the Neupogen injections – as he had checked her files and realized that this rapid alarming drop is the first ever for her.

  The Doctor has decided to stop the Neupogen with the hope that the platelet count recovers.

  Can you please share your experiences with us. We really hope it was the Neupogen that caused the sudden drop and not the MDS, she is almost aplastic and refractory to most platelets. We are hoping this is not another setback but rather just a kink in the journey.

  Thank you all and take care.

  Alice and Ibolya (My Mom)

  April 15, 2008 at 7:49 pm #20591
  Neil

  Member

  Hi Alice,
  You should consider looking for a new doc that has more experience treating MDS.
  Neopogen and Neulasta are drugs that increase White counts. They are essentially the same drug.
  Neither will increase platelets. There is some evidence they will reduce platelets in some patients. At this time there is no drug that will grow platelets. There are clinicsl trials on anew drug that shows promise on ITP patients. It is Lonafarnib. Thus far no data on its effect on MDS patients wit low plts.
  Remember platelet counts can vary by about 15,000 from CBC to CBC. It takes a series of CBCs to show if any count is trending. Platelets are the most difficult to deal with.
  A doc experienced in treating MDS, particularly low platelets can help. Neupogen/ Neulasta may hel boosting WBC but not platelets.

  April 16, 2008 at 7:21 am #20592
  Alice S

  Participant

  Hi Neil

  Thanks for your prompt reply. Mom has MDS since 2004 and I have read about as much as I can and follow this forum daily. I know all about Platelets and ITP (a friends daughter has it and I have done research on the subject for her.) Mom watches what she eats as well as ceratin foods destroy platelets.

  No luck on other Doctors, we are in Pretoria, South Africa. There are only about 125 MDS cases in this country. There is a centre on Excellence in Cape Town and that is where her Doctor came from to start a practice up here. She does BMT as well and so on, deemed to be very good.
  Mom’s platelet count has so far varied from 47,000 to 69,000 for the past few months and then suddenly when she received the Neupogen the platelts took the dive. We also know the dangers of a low platelet count very well – she had a brain bleed between the skull and membrane covering the brain (not using medical terms here) with a platelet count of 35, 000. Hence the reason for my asking about other peoples experiences with Neupogen and their platelet counts.

  Thanks once again and take care of yourslf.

  May 8, 2008 at 3:45 am #20593
  smfallen

  Member

  HI Alice –

  MY father has MDS with remarkably low platelets – you mention certain foods destroy platelets. Can you tell me what those are or where to find a list of them? I hadn’t heard that before and would like to know…

  Thank you!

  May 8, 2008 at 9:25 pm #20594
  Russ P.

  Member

  Hi Alice,
  I have recorded and plotted my CBC counts for a long time and have noticed that both WBC and PLTs went up when I was on Prednisone for short periods. Also there is some indication that fresh pineapple will raise PLTs.
  Russ

  May 28, 2008 at 6:17 am #20595
  Alice S

  Participant

  Hi, sorry for taking so long to reply, my mother is still in hospital after 4 weeks, despite rock bottom counts and host of problems, including the withdrawel of ‘life support’ ie antibiotic oxygen, ‘to let her go’ ‘peacefully’ as she requested, she came straight back! She is now battling with other prblems but her body actually still heals itsself!!!!!! I will have to tell her story sometimes as we had some heartbreaking as well as mind blowing experiences. Doctors made us ‘say farewell’ no less than 4 times in 10 – she is giving them hell for this! (She’s back and fighting, but that will be another story!)

  SMfallen, http://www.pdsa.org look under ‘itp info’, ‘warnings’ – actually the whole site is interesting.

  Russ, everytime they inject Neupogen the platelet count dives, lowest was 7, it takes about 10 days to get back up again, but then it goes even higher, catch 22 situation here. She had a very bad reaction to a bag of ‘special platelets’ the other night, thought we were losing her again. Heard the doctor speaking about giving her Cyklokapron’ – kind of artificial ‘apron’ that helps to prevent bleeding. Worked for her before.

  I hope above information is of help.

  Take care everyone. Much hugs to you all.
  Alice & Iboya

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