To Ella - re: bloody nose

[MariChandra]

I had a very serious bloody nose in early February.  4 hours of nonstop messiness.  I ended up in the emergency room.  At that time I was 39/48 weeks and on Neupogen for low WBC for most of that time.  Because of increasingly low hemoglobin (8.3 that night I was in emergency and 7.3 the next AM), I was given 2 units of blood.  Here I am in early March off tx at 41/48 due to plumeting hemoglobin and RBC.  All told I have recieved 10 units of blood, have been in and out of the hospital (5 days for the longest stay) and and am now receiving Procrit 2wk.  Yesterday was the latest transfusion,I was getting so weak that I could not stand long enough to make myself a cup of hot tea (this is serious for an Irishman).
My advice is to really attend to nose bleeds as potential red flags.  Keep up with your bloodwork numbers and try to make it to the end.  I am discouraged that I did not.
Hey, anyone know how long Procrit takes to kick in?  I have had 4 injections and still needed that blood yesterday.  It sure works fast in the TV commercials!

[LvdByGod]

oh my gosh that's so devistating. i'm so sorry you didn't get to go to the exact end of tx. i pray that thing is dead in you anyway... when do you get your pcr rna done? are you clear now? does your dr. feel you will stay clear?

i know you are right about being so careful about our tests. did you have any other symptoms of the low blood counts presenting prior to the bloody nose? anything we should watch out for? were you on anything before the bloody nose incident for low red blood counts? what were your blood count numbers in your last test before this event? thanks for any info you can give us. i will pray for you...your in our thoughts today.

[oldhippiechick67]

Hey there Marichandra.  Sorry to hear you took a nose dive (oops, no pun intended).  I sure wish your dr would've ck'd your blood more frequently, so this disaster could have been avoided.  I dont know how often you were getting it checked, but my experience has been that after the first 4 months they dont seem as concerned about cking it...because if it was going to drop it usually does it early on.   I have been on procrit since the 16th week when it got down to 9.4 hgb, 61 platelets,
27.6 hct.  At that time I was losing my balance, falling down, nosebleeds, gum bleeds, pale, short of breath with any kind of activity, and dizzy.  Those are all signs of low blood counts.
My father died of leukemia, he went to the hospital ER for nose bleeds several times.  So when I got those I was concerned. It only took about a week to get in to see the Hematologist who ordered the Procrit and Neupogen, cuz my liver Dr didnt feel qualified to order those meds.  (??) I got my first two set of shots at his office until mine arrived in the mail.  It took about 3 weeks before I felt better and by 4 weeks I had some energy again.  Best to you Marichandra, and hope your PCR comes back undetected, it has happened before !!  Let us know how you are doing!!   ohc

[Ella Mackenzie]

Thank you so much. It stopped yesterday but I am going to see my doctor and ask him about it. My RBC is normal but my platelets are down to 95 and WBC is 2.1. My hematologist saw this and wasn't concerned yet but I will get my blood work drawn on Tuesday so we will see.

[oldhippiechick67]

here is the procrit site and the neupogen one, they are pretty helpful and informative:
http://procrit.com/oncology/tools/cbc.html
http://www.neupogen.com/

They explain the CBCs and other blood counts.

It is addressed mainly to Cancer patients, but it applies to us because we are on a form of Chemotherapy if we are taking Pegasys or PegIntron.

[MariChandra]

You are right Dave, blood counts are done more often and watched closer the first 8-10 weeks of treatment.  My RBC and Hgb were dropping at a rather slow rate back then.  In January when the Hgb dipped under 10.0, I brought up the issue as I was having a lot of fatigue.  I feel that symptom complaints are so relative to the individual that doctors tend to downplay them.  When I said I extremly fatigued and short of breath...I meant it.  The GI felt that I had come so far (38 weeks at that time) that I could make it to the finish line.  I guess there is no way to know IF procrit earlier would have staved off the crash.
Thanks for the infomation about giving procrit a couple weeks to 'kick in' - I have blood work and a 5th procrit on Monday under the supervision of a Hemotologist who was called in.
Good luck to you Ella - keep watching both RBC and Hgb for drifts downward.
As for the ending PCR tests, it has not yet come up with my GI but I am considering not having it done and living on the shred of hope from my 12 week undetectable test.  What do you think?
This forum has been a critical source of information during my tx.  The links people have taken the time to post have been a wealth of information.  I have appreciated the caring and concern of a group of persons united by adversity knowing that we will never see each other face to face.