Should I be concerned?

Okay, i talked with the nurse this afternoon about my labs.  My hgb has dropped from a 12.2 to 10.6 in 2 wks.  She said the doc didn't see any red flags or warning signs to be concerned about. (I had an earlier post about lab results)  My hgb hasn't dropped enough to need any rescue drugs.  Maybe, I'm just wigging out a bit. My next set of labs are not due until 9/25.  I'm thinking a lot can happen between now and then.  She said if it would make me feel better, she can send me another lab slip. (after she made me feel guilty), and that if the sides were too bad, I could stop treatment, because there is no magic drug to make you feel better.  My sides aren't that bad, just very TIRED, dizzy, and mental fuzziness. What do yall think?  Should I be concerned or just keep plugging along?  Thanks, Kim

[GrandOak]

I'd ask to talk with the doc directly, or consider getting a second opinion.

One question to ask is "What if Hgb drops to 8 in next two weeks?"  and "When does use of Procrit become necessary?".  But more importantly, "With such a fast decline in Hgb and the time delay for Procrit to take effect will my meds be cut, possibly jepordizing my treatment or how will drop be counter acted?".

I've been where you're at.  Of course being a man, with low Hgb being 13.7, 10.6 is a lower drop than for a woman, with low Hgb 12.6, but my first doc waited until Hgb hit 9.8.  Then she cut my riba in half and when Hgb only slightly rebounded in two weeks admitted to bein in over her head and wanting to throw in the towel.  But with the towel being my life, I of course told her what I thought of that hair brained idea, went off to find another doc, who was recognized to be one of the top docs in MN for HCV and immediately was put on Procrit to stabilize Hgb.

I've battled trying to adjust Procrit and Riba for months  to finally get back to full riba dosage a month ago, but recently had to adjust Procrit yet again a couple of weeks ago when my Hgb hit 9.6 again and I am still waiting to see the results.  At 100,000 U sq each week, it amounts to three injections for the Procrit alone.  Throw in an occasional series of Neupogen, and I start getting concerned that one day I'll go to inject and have serum shooting out of me like a water can shot full of holes <G>.

Seriously, given that Procrit takes 2-6 weeks, by the claim in their own Product Insert, it is slow acting and you certainly do not want to get severely anemic.  I'm sure that the droppy eared dog Beagle Baily and/or NYGirl can also atest to how much fun THAT is.

For me, it seems that it takes Procrit 3 wks to kick in and raise my Hgb to a more functional level.  Although it has been so long since I've been above 10.7 that I'm not sure what a normal level even feels like anymore.

Just out of an interest, have you checked into what credentials your doc has when it comes to treating HCV?  I didn't with my first doc and by the time I found out she was only an infectious disease doc only 2 years out of school, I began to get real cagey.  Which was a good thing because I was already doing the research I should have done a couple of months earlier and on ahead of the game when it came to switching docs.

I certainly would not wish what I went through on anyone, even those poor cheap Folger loving coffee fanatics.

[Pauly Boy]

I don't know what the nurses problem is but don't allow it to become yours... You have to feel able to bring anything to that nurse and talk about it. If you can't do that then go to the doctor. Please, don't buy into what she's selling. Forget her for know. At week 3 I dropped 3 points in my HMGB. That wasn't the only thing. I also had extreme exhaustion. I'd be panting like a dog after walking a half a block. I knew something was wrong. I called the office, made an appointment to see my doc. Then, I came on here, laid it out, everyone gave me there experience and then I had my t's crossed and my i's dotted. I called back and leaned heavy on how I felt and what was happening. I was told: They use the HMGB lab result as one indicator only, it is not the only indicator of how tx should proceed. The number 10 is used as the benchmark only. That other considerations come into play: since my result dropped 3 points in a week and since I was complaining of the type of shortness of breathe and exhaustion that I had, I certainly had an issue to explore and be concerned about. They reccommended we could either wait till the next week and do the labs again and see where we are then, we could do a blood transfusion to increase the count or we could use Procrit ( a drug used for this type of situation). I had to push a little but after a little conversation, I said that I'd rather start the Procrit right away in stead of waiting till next week, given the way I felt and the drop I'd suffered they agreed. Oh, I also refused the offer of a transfusion. The day after the procrit showed up and I started. Within a week I noticed that I was no longer  panting like my dog after feeding her! After 2 weeks my lab results stopped dropping. It hasn't taken away the fatigue and tiredness that I have all the time but I'm glad I pushed for Procrit. My doc told me that insurance carriers do not disallow for the payment of procrit if someones labs are above 10. I've heard that before and in my case it just was not true. One of the wonderful things I've learned about all the professionals that are involed in my tx with me, is that I'm fortunate to have a group that are willing to listen, not just to themselves but to me as well. So, if nurse Cratchit will not listen to you, ask for the doctor. Good luck, stay strong and keep the faith!!!              Pauly

[sundancer2007]

Thats a drop I would be concerned with wonder why your Doc is not..

[painterlady13]

Hi Kim,  I wrote on this earlier in a post to you....  I believe I would be asking for another cbc in 2 weeks.  it is too early in your treatment to be doing cbc's once a month especially with the recent drop in HGB.  And it is not out of line to push for it to be done this is your health and your body. you don't want to get too low and become anemic.  your recent drop was only a 1.6 drop and most docs don't become worried unless it is a full 2 points but with yours being so close to 10 and 10 being the "magic" number for procrit I would be wanting to keep a closer eye on it.

[texas tornado]

Thanks for the responses.  I will be getting my cbc early part of next week.  Have a good day, Kim

[NYgirl]

A 2 point drop really isn't that bad in all reality and it DOES depend on how QUICKLY it happens too.

Although we feel like pure GARBAGE the docs don't prescribe until it's like life or death it seems.  Procrit comes with it's own set of problems you see and while I believe fully it is a miracle drug - they try to wait and see if you can rebound on your own.

I had a 6 point drop in ten days.

It sucked. And then I had to wait for the Procrit (Epo in my case) to work. I was stuck at 9 for almost 2 months and it was NO fun.

Make SURE you keep having CBCs as often as the doc will allow. It's CRUCIAL where you are to make sure you know exactly what is going on.

PS Remember...it DOES get better!