5 replies to this topic

[Tedsey]

I now have to use Neupogen more often because my neutrophils are bottoming out. Have used Neupogen about 4 times now.  Before it was once a week because the neutrophils would climb up to about ANC 1.0 on Neupogen (and for a couple weeks 1.0 and 1.5 without Neupogen--go figure).  I used it last Tuesday and Thursday.  I know it takes a while for it to generate new cells.

Saturday, I started to get very sharp pains in my lower legs.  It was in the back muscle and in the front bone.

I also have pain in my forearm bones and muscle pains in my thighs.

The worst was the left shoulder blade pain.  I also had pain right under my left ribcage at the same time (read this could be serious, but cannot run to ER for every ache and pain and it went away)

Does this sound like Neupogen side-effects or could it be the Gleevec?

I have never experienced this before.  I'll talk to the onc Monday.

Although very painful, it is intermittent, (but every few minutes).  I find I can still function.  It make me anxious though.

[leahamarie]

I cannot comment on the Gleevac, but my son had to have neupogen a lot and he experienced bone pains which worried us a lot at the time. We would  mention it to the dr's but they never really said a word. Then I read on the internet that neupogen can cause bone pain and it eased our worry about the pain.  It was just a shame the Dr's or nurses didn't tell us about it, would have saved us a lot of worry.

[Tedsey]

Thanks.  I read about flu-like symptoms, but I sure was not prepared for the severe bone pain.  That was a surprise.  Never ever had a flu like this!  I hope your son is doing well and no longer needs the Neupogen.  All the best to you both.

[FredK]

Hi - I have had Neupogen and Neulasta  and from my experience I prefer Neupogen.  It is a personal thing and the results vary widely between patients.

When ever I get the Neupogen shots the nurses always inquire about bone pain. I have never had any,

If you got to the CLL forum and read through the thread on "TRENDA QUESTIONS", half way through it turns into some discussion about Neupogen  and Neulasta and the pain associated with the shots. Also included were some suggestions as to how some patients were using different pain relievers to help.

Good luck - Fred

[Tedsey]

Thanks Fred.  I'll take a look.  It appears my onc wants to use Neulasta instead.  I get little response from Neupogen (ex. I'll go from .3 to a whoppin' .5).  I get a little relief this week cause I have a BMB scheduled for Friday (if you can call that relief).  Onc said not to take a shot today because it might interfere with the read, so she will order a shot of Neulasta after the procedure.  My platelets are in the 40s (thousand, that is), so painkillers are a little hard to navigate.  I have upped my folic acid to 800mg and will also increase my vita. C.  Hope that helps with the cells.  Thanks again.

[FredK]

Hi Tedsey,  - While I prefer Neupogen (5 shots) I think I will request Neulasta ( 1 shot ) as I would like to leave on vacation

right after my next treatment. A ANC change from .3 to .5 is not bad, those increases are hard to come by.

My platelets  run in the 40's but I had not heard of pain killers affecting them, I will have to look into that.

Fred.