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.

[dperry10]

It appears the lab work she has me going for this week and then every 2 wks has the same thing  CBC.. is this going to give the PCR too ?  and whatever else he is measuring my drop in, that shows I am responding ?   Did he forget one ?

[HCA]

Full blood count does not include PCR,which is seperate test.
If Doc. is looking for 2 log drop you must be within your first 12 weeks of treatment and they will do PCR after 12th shot.
2 log drop is absolute minimum level of viral clearence to justify continuing treatment,with luck you should better that.
HGB at 10.3 is an alert, but not a mega alert depends what was starting figure and how quickly it has dropped.
Treatment dosing is pretty standard and no proven percentage in fooling with it.
Sounds like Doc. is up to speed and I don't think he has forgotten anything.

[dperry10]

Thank you for replying.   here is how I have dropped since beginning :

Pre BX : Hemo was 14.9    WBC 9.6
after 1st wk 12/29 = 15.3     5.0
             1/5 = 13.3       4.8
              1/12 = 12.6     4.2
              1/19 = 10.3     3.8

This friday will be week 6.. and I go back to dr in a month, so I guess you are right, he will have me take the other one at 12, and for now he is watching it every 2 wks (CBC ) after doing it again this week so he can see if I actually am below 10 now for the procrit.  

I just feel so ooooo tired sometimes.. Today I feel great..

[HCA]

It's dropping fairly steadily.Procrit should help stabilize it.
I would try and forget about it all for now as far as you can,see what your 12 week pcr looks like.

[dperry10]

Ok I will sure try, as long as I feel like I do today, no problem, its when I can hardly lift my arms to type or brush my hair, that I get worried.   I have been able to keep food down since lunch yesterday, so my sugar level is back up to normal instead of being in the 40's... way tooo low.   But thats what happens when you get sick after eating.. kinda hard to keep those calories that way.  Well going to cook some fish and have a salad..

[wyntre9]

I don't know how you're functioning at work with all your sx.

I have to hand it to you, the way you're so on top of your lab reports.  I'm trying to get copies of my bloodwork (the doc has me going every week and schedules me to see him every 2 weeks) so I can try to educate myself about the process.

For now, he's monitoring my results, he even called me twice a week and a half ago to go see a hematologist for a shot of neupogen coz of low wbc.

But most of this stuff is way over my head.

Take care of yourself.

[sfbaygirl]

What kind of DR. do you have? Is he a Hepatologist? This I doubt. Your Hgb should be taken care of soon, there is NO REASON to wait for below 10. Gawd, I am tired of saying this. A good Hepatologist would not make you suffer this way. Also you PCR dropping "nodes"? Do you mean logs? This guy doesn't sound like he is up on the latest studies. I dont' want to freak you out, but PLEASE get another opinion about all this before you get too far and regret not doing so. I did regret not doing so, and am stuck with treating for another six months, most likely. GET IT DONE NOW>   Take care sweetie...I am thinking of you, really! Two log drops are a thing of the past. You need to look at your 4 week PCR and then the 12 week PCR....the new studies are really the way we need to look at things these days. Most of our dr's (including mine) have no clue what is happening in the world of hepatology.

Linda

[dperry10]

He is a Gastro, says he will refer me hemo if I want but he can prescribe the Procrit there.  I asked if we could go ahead and do that, but he wanted to wait.. should I take it upon myself to call a hemotoligist.. or would that **** him off >  ??

[dperry10]

He did say to logs.. My mind is not all there sometimes.. I confuse myself.  So he should have taken a PCR at 4wks ?  that would ahave been over a week ago..  I don't know what to do..

[wyntre9]

I'm confused to.

What's PCR?

[sfbaygirl]

A PCR is what everyone of us on Tx need to get to tell what our viral load is. Traditionally this has been at 12 weeks. Now they say that if you are clear at 4 weeks PCR, you have an EXCELLENT chance of clearing the virus at 24 or 48 weeks, depending on your genotype. PCR's should be done now at 4 weeks, according to recent studies. When you get a PCR it should be a sensitive one, down to <50, or best <5 IU/ml. You should ask your Dr. when you are to get these PCR'S and how senstive they are. Some PCR's are <615, meaning you could have viral loads of >600, which are a LOT of virons. The more sensitive the test the better. Please those of you who are new, post your PCR tests, so we can let you know, if you don't understand. I did this at first. Print all the results...I got lots of feedback and understanding. These PCR's, TMA,'s are really, really important early...especially before 12 weeks. POST your Viral LOAD counts, if you aren't sure. PLEASE. I am having to go another 6 mos. on tx because I didn't follow though at first and understand what was going on. Please ask any questinons to me or others here....its'better than suffering later.

[dperry10]

What do you suggest I do, should I call and speak to the nurse tomorrow  ? since I know the dr will never come to the phone.  Can I ask that they go ahead and run a PCR now, even though I am now at 6 wk shot ?  Or should I try and find a local hemo to switch to for treatment ?   I do not want to stop treatment of course, but If I am a non responder, then whats next ?  Is there any hope for Geno type 1a ?  Or am I wasting my time and money on treatment ?   I am so confused .  

I don't want to take any more risks with my health obviously, but if I need rescue drugs, how do I make him do it now rather than waiting.. he is the doctor..  

Dana

[sfbaygirl]

At six weeks, I suggest you try and get a PCR, if you have't had one yet, if you can. I didn't get my first one until 10 weeks, then the dr. said it was UND, which wasn't true....so I went on blindly until week 10 when the test said UND, and I discovered it read differently than the 10 week PCR. PCR's are really different. Mine were under 75 IU/ml, but quantitatively tested to 200 IU/ml.

ASK how sensitve your PCR's are going to be <5, <10, <50, <75, <615? This makes a HUGE difference. These are in IU/ml's. Internationally they are read as copies which are 2.5 times the IU's- meaning if my viral count was 4.5 million at the beginning of tx...it was actually 10 million copies in international units.

The sooner you get PCR's, the better. Get a hemotologist. Get a good hepatologist and weekly CBC's. Have PCR's at week 4, 12, 24, 36 and 48. to make sure your tx is working.

[dperry10]

I just keep telling myself its gotta get better than this, but if there is a chance that I may be a non responder, then I do not need to take the time off.  I will just wait and see how I feel, and use FMLA as needed, as long as I can afford to go without pay during that time.. I do not want to use up all my days,   I do get like 6 sick days, and if I use them up all in 1 shot then go on short term disability, then when I return they would give me my sick days back, but only once in the next 3 years  (union contract period , so do not want to burn up my sick days one by one, in case I ever need to go out for a short term time later, as If I use them up a day at a time, and then get really sick , would have to take days without pay, and have it go against adherence at that point.. So have to use my days wisely.. I do get , earned paid work days, as well as vacation days, which I already scheduled .  I will get 90 percent pay for up to 6 months.   So I guess I am lucky there.  I just have to be careful how I use those days.

[sfbaygirl]

Get a PCR and you will Know whether the tx is working or not. If it is not working and you aren't clear, undectectable, by week 12 (hopefully sooner, by recent studies) then, you would be a non-responder, or a not an early responder, meaning you would have to extend tx, or stop (as a non responder). This all may sound confusing, but it is REALLY important to understand at this early date. 12 week PCR, should NOT be a 2 log drop, but a UND. If not you may want to rethink treating now.

[dperry10]

Ok I will call the doctors office tomorrow and will print this out so I know what I am asking for.  I just do not know how to be demanding about it, or should I just go ahead and ask for a referral to a Hemologist and try to get in there ASAP ?  I will see what they say..

I mean what do I say to the doc,,  I would rather see now how my PCR is doing and then again at 12 weeks ?  so I know early on if I am responding ?     Or I am concerned about my Hemo now and would feel more comfortable knowing now how I am doing, and getting started on the Procrit, so I have a better chance of SVR ?

[dperry10]

OK.. well its printing now.. I had hoped for your response before printing, but can print that out tomorrow and take with me to work so can call the doctor on my break and see what I can do.    I am on my way to bed .. Have a great evening and will talk to you tomorrow.  thank you again for all your input.

Dana :)

[ladybug52]

I agree with SFbayGirl. You need to get that procrit now. Everyone who has had to start procrit advised me not to wait and they were right. I felt my best today in a long time and I will do shot 3 of procrit tomorrow.
Here's what you say to your Dr or his nurse:
How often do you check my viral load? You (he) said that I needed to have a 2 log drop to know if I'm responding, has that test been done yet? I would like to have that done before 12 weeks. (if his answer is @ 12 weeks) How sensitive is the test you are using, can I have the heptamax test, I hear it is very sensitive.
I don't want to wait till my hemo drops any lower, I feel like **** now! Give me an order for some procrit, I have to put up with this **** not you!
Ok you get my point. Be assertive. Good luck
Bug

[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.