Hi James-
Everything I have read about helper drugs is that the amount should be adjusted to keep you at a safe level rather then a normal non-tx level. These drugs are doing serious things to our bodies and the amount taken should be the minimum to achieve a safe level, whether it's epo or neupogen or whatever else a person may need.
I haven't gotten copies of my cbc, I just get the information I ask for or that the study is flagging because of problems with my blood cells. We have discussed the wbc, but I believe that the anc is usually the issue with interferon and the part of the white blood cell count that most doctors monitor the most closely while on tx. Of course they look at everything, but my doctor is particularly concerned about my anc.
I always feel terrible from neupogen. It makes me very fatigued, nauseous, foggy and I have bone pain. These seem pretty common, but we all respond differently. You are really lucky to be getting a lift from neup, but I don't think that is very common from the comments I have read. I wish I was getting that lift. I dread taking the stuff every week.
I am glad that you are doing well with tx and glad that we have connected. This forum really helps us find other people experiencing similar issues and offers immense support for us through each other.
Have a wonderful day - dave
normal range for ANC is 1000 to 8000. 500 is cutoff area. You are well in range. Be happy!
What is your WBC ? Mine went to 23, or, twice normal after taking 4 neup shots in a week. Unfortunately I didn't keep a copy of that CBC and didn't check my ANC at that time.
to anyone-
isn't your anc level supposed to be kept at a minimum safe level with neupogen. My anc shot up to 6500 and I have been told to continue at the same dosage. I know that is in the high normal range off tx, but isn't that too high for neupogen therapy. That level was taken two days after the injection, and also a day after injecting INF.
Thanks
I think you are on the right track, finding the answer you found.Most of the time in research you see nurses, or docs bent on finding cures, publishing etc etc. They don't all tend to be well versed in blood chemistry. One size doesn't fit all, and when overstimulating the immune system it can turn on us.
I would not just print up that answer you gave, I would go find some published material on the best dosing for Neupo, and hand them to your nurse, whom we know is caring, but say respectfully, I want to try a different dosing regimes, or to at least see a blood specialist about it.
Assuming you are at a university (you are in a trial) it shouldn't be a big sweat to let an oncologist take a look at this. Better to keep you IN THE TRIAL.
Since the low platelets could make them boot you out early, last thing you need, I'd make every effort to get the dosing adjusted, and quite frankly, since they give you the syringes, I'd just go ahead and do it that way. You will still get bumps, but without so much overstimulation the whites won't turn on the plates so often.
Hey, you are the coach, put the players on the field as you see fit...especially if there's a rational that seems superior, use it.
mb
Wow, you've had quite a ride. I hope you stay und, but it sounds like your doing very well.
This is my first tx. I was diagnosed 12 years ago when only INF was available. My first two biopsies were stage 0 and my doctor said to wait until better drugs were available. My 3rd biopsy this year showed stage 2-3 and it was time to treat.
I waited 12 years for something like boceprevir to be available, I am very thankful. The battle is far from over, but it certainly gives treatment a new purpose when you have some positive results. Today is a good day, even with the platelet issue.
I am truly wishing the best for you and long term SVR.
Take care - Dave
Into shot 30.
UND at 10 weeks, the same day they stopped tx for 2 weeks.
3 shots later they took me off another 2 weeks.
5 shots after, a second VL test came back UND and they took me off for another 2 weeks.
The next VL test will be Aug 09, by then I'll have had my longest run of shots @ 12.
Fingers crossed I'm still good.
Read your post declaring your UND status. Congrats!!
is this your first time through tx too?
Yeah it's a really problem have your platelets low, there doesn't seem to be much of an answer. At least low HGB can be handled with epo and it's a sign that your riba is being absorbed. There is nothing good about low ANC and platelets. The low platelets really concern me. I am concerned that my next INF injection will send them down even lower.
Good luck with your tx also, how far are you with treatment and how's it working?
Dave
Thanks for asking the question. Am looking forward to all the knowledgeable answers coming up. I share the same problem of low WBC/ANC and low Platelet counts. Both stay tightly in the borderline area. I've been taken off twice for low WBC/ANC and once solely for low platelets. Finally they started giving me Neupogen. It works! It would be awful indeed if a side of Neup is lowering PL's.