Lab results - still confusing

[Junebug812]

Hi all,
I started tx for genotype 3 on 12/3/10. I'm really struggling and having lots of side effects but am determined to keep going, especially since I only need to do tx for 6 months. My VL was 0 at 4 weeks which was very encouraging. The other lab numbers are confusing to me though. My doctor is talking about putting me on another injectable because of my hemoglobin.

As of 1/27, this is where I'm at and this is where I started:

ALT  start: 27, now: 24
Hematocrit start: 39.7, now 29.6
Hemoglobin start: 13.5, now 9.9
WBC start 5.7, now 1.9
Platelet start 238, now 130
RDW/RBC start 12.9, now 15.1
Red blood cell count start 4.13, now 3.11
Absolute neutrophils start 2.7, now 0.8

These seem like the important labs(?). My doctor called me last night expressing concern about my hemoglobin levels. He asked me what side effects I'm having and I told him I'm having problems with my breathing. I can't walk two blocks without assistance or needing to sit immediately. My bronchial tubes feel all messed up and I cough so much that I now have chest pain. Before tx, I was very healthy, fit, vibrant. I am now a shell of myself. I have also lost 10 lbs since starting tx. I'm 5'9 and went from 145 to 134 in 5 weeks. My skinny jeans fit now, but hey, not even sure that's worth all of this!

My doc is going to do blood work again on Feb. 15th, mainly to see where my hemoglobin goes. What is this injectable he is talking about? Anyone know? Should I be worried about a 9.9 hgb? Anything I can do on my own to get it to move upwards?

Thanks for any advice.

June

[Junebug812]

I do work with children so maybe I just picked up a bug. Good to know the Procrit hasn't caused problems for you all. I'm looking forward to being able to run a marathon in two weeks once this has kicked in! (joking).

June

[Junebug812]

I'm with you. Even if these are sx, I don't care really. It will be nice to feel somewhat decent again rather than just a shell of myself. I'm hoping my HGB gets up into the 10s!

:)

[can-do-man]

I would say your symptoms are unrelated to the procrit, after all the weeks i also never had any adverse reaction to it.

[nygirl7]

No I never had any adverse reaction to Procrit at all - I really dont think it's related if it is it is pretty uncommon.

And yes let it warm up a bit and then go very very slowly and it will help with the burn. Burn or no burn I didn't care as long as I could get the stuff into me!

[Junebug812]

Thanks Dave. Yep, I will just have to be patient and hope it kicks in sooner rather than later. My doc prescribed the Procrit weekly and will be doing CBC work every two weeks.

I'm pretty sick this morning, same sort of symptoms I had the first couple of times I took interferon. Did Procrit make you ill the first time? No big deal really, what are a few more sx compared to the anemia?! I can deal, just wondering if that was your experience.

thanks,
June

[spectda]

It generally works quite well. It really does take time for it to kick in though, Generally at least 2-3 weeks and sometimes longer. It's important that you are having regular injections even if you feel better so your hgb will generally stay at reasonable level.

Good luck,
Dave  

[Junebug812]

Thanks for the tips. Maybe I'll do a better job with it next week. Was kind of clumsy this go around. Burn or no burn, I'm just glad I was able to get the stuff. I hope it works!

June

[spectda]

How's everything going with you?  Hoping to follow in your boce induced svr before long.
Be Well,
Dave

[can-do-man]

Yes room temperature and inject it slowly makes a huge difference!!

[spectda]

I don't know if room temperature was accurate, but let the procrit warm up a bit by leaving it out or holding it in your hand for a while to warm it up. It really makes a difference in taking the burn away.
- dave

[spectda]

leave the procrit out of the refrigerator for about 20 minutes so it can get to room temp and inject it slowly. That should take away any sting you are feeling.
- Dave

[Junebug812]

Hi uncledudeness aka Don Corleone,

Just took my first shot of Procrit as well. It does burn, doesn't it. Was also a little confusing working out the injection since the Procrit comes in a vial rather than pre-filled syringes. I hope you have success and feel better soon, and I hope I do as well.

June, aka Kathleen Turner

[uncledudeness]

hi junebug812,

i just took my first shot of Procrit 30 minutes ago. it burned a little. my HGB dropped from 10.9 to 9.7 in a week; along with the rest of my CBC's. i have the same problem as you with the coughing and flu-like symptoms. i sound like Don Corleone...it takes from 2-6 weeks for the Procrit to kick in. my chest pain and breathing has become a real problem. i hope the Procrit helps...

good luck on your journey

[Junebug812]

I am very much hoping my doc will prescribe Procrit. I can handle all the other side effects I have, I just can't seem to handle this breathing issue and now heart palpitations and pounding. I'm going to tell him tomorrow that it's getting unbearable.

Did you get the part of the doctor for the beer ad? ;)

[Junebug812]

I am very much hoping my doc will prescribe Procrit. I can handle all the other side effects I have, I just can't seem to handle this breathing issue and now heart palpitations and pounding. I'm going to tell him tomorrow that it's getting unbearable.

Did you get the part of the doctor for the beer ad? ;)

[paen53]

Are you seeing the Dr. again on the 15th? Hopefully then you can get the Procrit. Some say it takes a couple of days, weeks to really feel it, but I felt better almost immediately. One more shot a week and another blood draw til it stabilizes, but sooooo worth it. Try not to exert for the time being. In addition to the shortness of breath, added activity like walking up steps, made my heart feel like it was pounding out of my chest. After starting the Procrit, I could resume walking again and lite exercise for most of tx.

[James10500]

Don't force yourself to do anything.  Those numbers are low and you need Procrit.  I'm not a doctor but auditioned to play one in a beer ad.  Just a concerned hep friend.  Get some EPO girl !

[Junebug812]

This past week has been so hard. Breathing is hard even when I just stand up. Just got results from the latest blood work and my HGB has dropped to 9.7 now, hematocrit still at 29 so I guess that's good?

Good to know Procrit helps though I don't know if my doctor is going to give it to me yet. Thanks everyone for the helpful advice. I'm carrying water with me if I go out and I don't walk far from home when i go for walks. Forcing myself to walk actually as I'm guessing it's important to try to be active without pushing it.

[paen53]

I struggled with walks once my hgb tanked. I did feel MUCH better from the Procrit which kept it in the 10's for most of tx. One thing I learned from my experience was to always have my cell phone with on walks and a bottle of water. I never passed out, but there were a couple of times I walked too far and then wondered if I was going to make it back OK. Then I could call for help if I needed it - just in case. And water because the few times I didn't I developed a raging headache from dehydrating even though it was a leisurely walk for the most part - no power walking by then.

[James10500]

First congrats on UND, I forgot to say that in my first post, shame on me.

Second rest rest rest. You can't push yourself on tx.  Try mellowing it out to a walk around the block.  And if you feel good do two a day but space them out.

[Junebug812]

Thank you all for the information. My general practitioner recently had me do a stress test and the results were excellent, so no cardio worries.

My doctor wants me to do blood work in two weeks to see what the hgb number is. I hope in the meantime it doesn't keep dropping. I've been pushing myself, went to the gym, last weekend tried to go for a long walk, but I keep failing and almost passed out while on my walk. I guess I need to listen to my body.

It's encouraging to know that this isn't all in my head and that I'm being weak. I was starting to feel that I should try to be stronger, mind over matter type thinking, but the feedback you've all given me makes me realize that it's ok to take it easy for a little bit until I can get my numbers up.

Thank you very much!

June

[frijole]

What get results - UND at week 4.  Congratulations.  Do you know the sensitivity of the test?

You definitely need some Procrit (Epo) soon.  Quality of life could be improved greatly if you will begin.  What is one more shot, eh?  In fact, don't be surprised if they don't say neupogen is next.  Your ANC (absolute neutrofils) look okay now but a lot of GI's start pushing for neupogen to boost your white blood cells when it drops below .8.  I do believe C patients can withstand a drop as low as .4 but your doctor may push for it sooner.

Personally I begged my doctor for the Procrit when hemoglobin (HGB) dropped below 11.  You make me look like a wuse at 9.9.I don't know how you are doing much of anything.   I worked full time (desk job) during treatment and needed to be able to do that.  The Procrit kept my HGB in the 11s and 10s throughout treatment.  You asked if there was anything you could do on your own about the hemoglobin and, frankly, there is not.  You really do need this boost for your red blood cells to increase.  Once I was on Procrit and Neupogen, I had to get weekly blood tests.  I would wait at the clinic and discuss with the nurse whether I needed a shot of either that week.  You may be able to get away with shots every other week but first you need to bring up your HGB.

good luck,
frijole

[James10500]

Looks like you numbers were low to begin with, HCT, and HGB.  The lower reference numbers for my labs is 41 for HCT, and 14.1 for HGB.

At the start my HCT was 48 (I live at altitude and exercise everyday), It was 34 at one point.  So as far as percentage drop your numbers seem pretty normal.

As Bill says get some EPO and you'll turn a mediocre cycling career into 7 tour de France wins.

Good luck.

[mk_]

After a few weeks during my tx, Hgb also went down below 10 and hovering between 9.5 and 10 till EOT. I felt major exhaustion and out of breath even in very light activities, like you mentioned,  for a week or so while the Hgb continued dipping down.  But once it was stable between 9.5 - 10, seemed like body adjusted to the anemic condition,.. still felt poorly but not much vexing as the earlier weeks.

My primary care did check up for my cardio anyway to cover the bases. If you have chest pain (besides irritation from the coughing) you probably want to have your doc's attention.
Just listen to you body, pamper yourself and take all the rest you need during tx. Good luck!