Most Recent HGB is getting lower and had visit with Doc today

[dperry10]

Well makes sense why I felt so bad last thursday, my HGB for friday is 10.3.  Says after next test will be able to tell if he needs to order the Procrit for me.  I asked if maybe we should go ahead and do that, and he says to wait.  Hopefully it will level out.  Now I go for one more this week and then every 2 wks.  Says if PCR drops at least 2 nodes can continue on, otherwise will pull me from treatment.  I asked about uping or changing doses instead if that happens, and he says there are no studies that say that will help.  

I do not know what to do now.    I feel better today, and did go to work and was productive today.   I talked to him about time off from work, and he says to wait and see what happens.

[ladybug52]

Looked better before they beeped out my cuss words. Hope it made sense. You want to make sure he's not waiting till week 12 to do a viral load test, and you want to make sure it's sensitive and can detect <10 copies of the virus.
Bug

[wyntre9]

This is so overwhelming.  I've had bloodwork done 4 or 5 times since I started tx 12/23/06.  So far I've only gotten the first report.  I was yelling at Labcorp today, trying to get the last 2 reports from 1/11 and 1/15.  Went for bloodwork yesterday and made sure I submitted a form to send results to me as well as the doc.

I see Doc next Wednesday.  When I saw him, a week ago, he asked if I'd scheduled a follow up visit with the hematologist.

I told him I didn't know I was supposed to.  Although the hematologist did say, after giving me the neupogen, that he'd probably be seeing a lot of me as I'm supposed to treat for 48 weeks.

So, despite my paranoia, I'm inclined to think my doc has my case under control.  After all, he did call me twice (I'm still stunned by that) within fifteen minutes when he got the lab results showing a big decrease in WBC and he did set up the appointment with the Hematologist that day.

I don't know.  Reading about poor DP's plight and your advice to her has got me worried that maybe I'm not on the right track.

LB, if you're only on shot 8, how do you know so much?

SF, Thanks for all the warnings and advice.  I'll be in touch.   y

[ladybug52]

Because I'm a big chicken and hung out here for 6 months before I started treating. Also, I'm still learning. Some of the same people have had to tell me the same thing several times in several different ways for me to get it. One of my favorite questions came from sally0, I think, and she told someone "Explain it to me like I'm 4 years old" Sometimes the jargon is so new and foreign you have to hear it over and over and well you know repition is the key to learning.
Bug

[wyntre9]

That's for sure, the repetition part, I mean.

I just emailed Labcorp requesting copies of bloodwork.
I guess my Dr. would have contacted me if there was any major change.  (He really redeemed himself when he went to bat for me
1/12, calling me a total of 4 times that day to send me to the specialist and later that evening to check on how I was doing.)

But though I do trust him that doesn't mean he's any easier to communicate with.  There's no way he's going to explain things and answer questions like you guys do.

Thanks.

[ladybug52]

We're really night owls right? I'm going to regret this in the morning! Your dr sounds great. I find the more knowledge I have the more the dr will listen to me. Especially if it's a caring dr like yours seems to be.
Bug

[wyntre9]

My Primary refused to renew my ambien script until Saturday so, as you can see, I can't sleep.

Hope you don't have to work tomorrow.