updated blood work

Ok.  Went back to my specialist yesteday for my 8 wk visit.  Saw the NP, not the Dr., as usual.  But I will see the Dr. on my 12 week visit.  Here are the results of my cbc:

WBC  2.1
LY  45.4
MO 9.0
GR  45.6
RBC  2.95
HGB  9.6
HCT  29.0
PLT  61

The NP said we will retest on Monday.  If my HGB gets to 9 or below "we will talk about options".   I asked, Procrit?  He said, well, maybe, but actually procrit will not make you feel that much better.  It will only raise your counts a little.  As for my platelets, he said that if they get to 50 or below, he will look at a reduction in dosage, and if it gets below 25, he will stop treatment.  I asked about giving me platelets, he stated that it would do not good.  The platelets would not last very long.  He is just watching my WBC for now.  My ANC is 1000, so he says we are ok for now.  He doesn't seem to be very anxious to give me any rescue drugs.  I would much rather have the rescue drugs than cut dosage, am I thinking correctly?  Feedback, please!!!

Jean

[dorsey15]

HCG 9.6 ! What is he thinking!! You need Procrit now!  You must be dragging your butt!
Call the doctor now and demand they put you procrit now!  Your white count is ok for now but they can drop or go up quickly... so you should have weekly blood tests right now... Call the doctor.. Good luck...
Dorsey

[jt57]

yes.  I am dragging,  and I was thinking the same as you.  I think I need procrit also.  Why would he be hesitant to start me on it?  I started at 14.5 HGB, and am now at 9.6.  Big drop, in my opinion.

Jean

[dorsey15]

Jean-- Absolutely-- your red blood cells are your OXEGEN!  Your breath!  and procrit does take a couple of weeks to work...it WILL bring your RBC count up... It would be my opinion to call them right away (the doctor) not the NP and tell them you want the procrit ordered today....
Good luck on your treatment....
Dorsey

[jt57]

thanks Dorsey.  I will call now.

Jean

[HCA]

HGB of 9.6 is not pleasant but bearable-I was 7.8 at one point even with rescue drugs.Aim to maintain at about 10 or 11 with rescue drug Procrit.
Your main point-are rescue drugs better than dose reduction?
YES!
They are expensive! Procrit doesn't always work but is the drug of choice.
Dialogue with NPs is almost always useless-they don't know much and have no decision making responsibilty!
You have to revert to the doctor to actually deal with the issue ,as stated above.

[jt57]

7.8!   I thought that was transfusion territory?  

Jean

[HCA]

They transfuse at 6!

[spider123]

I was feeling very, very tired, before Procrit,
My mail box is up a little hill on the top of
the hill and before, Procrit, I, had to stop and ketch
my breath, half-way up the hill !!!
I, told the Nurse I, had No Energy !!
Now i, am on Procrit !!
When, I, first took it I, had, A fever, and Vomiting from
the Full-Dose = (20,000 Mcgs)
So, I stopped it !!!
But, then I, had to take it again, "No-Choice !!
So, we divided the dose in -Half  (10,000mcgs x 2= 20,000 mcgs)
This for me is more bearable !!!
Everyone is Unique and different, they raect differently to meds !!!
Some people are Ok, and some are "Sensitive To Meds like Me !!!
I experience sore muscles and joints from all the medications, like
I, have  the Flu 24/7 !!!

Good Luck,

Spider123

[jt57]

Thanks spider.  I have no energy either.  Just took my dog out and I am absolutely out of breath and having to lie down. l am really, really tired of feeling this way.

[jmjm530]

Your doctor is off. Procrit (epo) has made a significant difference for many of us here. In my case it would have been Procrit or reducing the riba. Waiting until 9 seems a bit reckless unless you are handling the low hgb levels well, which some do. "10" is a number that most would intervene by. In my case I got Procrit at hgb 11.x because of symptons and the drop from pre-tx baseline. Keep in mind that Procrit can take 2-4 weeks to kick in so you really don't want to wait till you're in too much trouble. Is your doc a liver specialist (hepatologist)? He may just not have enough experience.

[jmjm530]

They transfuse higher than 6 -- 7 or 8, if  I remember correctly. "Bearable" is very relative when it comes to hgb. What is bearable to one person may put another in the hospital. It also depends to some degree at what point in treatment. I ended up in the ER with hgb 11.6 (approx) but it was around week 3 of treatment. The same hgb level six months into treatment would have been bearable because my body in that case would have had time to adjust. I don't know what "jt's" symptons are, but it's only week 8.

[jt57]

I read somewhere that the cut off point for men with hgb levels is higher than for women.  A 9 for a man would be worse than a 9 for a woman.  Am I correct?

Jean

[jmjm530]

In general, you are correct. But the more experienced/enlightened doctors will base helper drug intervention on more than just tables and guidelines.

They will take into consideration pre-tx hemoglobin, the rate of drop, week of treatment, age and overall health profile, and very important -- they will take into consideration your symptons. Not everyone (even of the same sex) handles a given hemoglobin number the same way.

-- Jim

[jt57]

I am really having a tough time functioning.  I have also been diagnosed with Mono....fun, fun.

It is week 8.  Started out at 14.5,

Called my doctor earlier, but haven't heard back yet.  Maybe because of the mono they are putting off procrit?  I don't know, but I really would like to be able to BREATH a little better!!

Jean