An Update and Some Questions

[iwillbeatthis]

I'm leveling off from my first Neupogen thing, I had another blood test yesterday, the morning after my 3rd shot, the new hemo wants to watch closely. She just called (on a Sunday, gotta love her) and left me a message. My WBC went from 12.7 to 10.8, she didn't say anything about the ANC which I'm sure is fine because I guess they travel together, but my platelets have gone down again from 100,000 to 79,000.

I'm not complaining, I'm just really bummed that this has happened so early, I just took shot 3.
So my questions are:
Is this really early to be dealing with this?
Does this mean that I am going to continue to go downhill like this? (I'm so afraid that I won't be able to continue tx)
Did this happen to anyone else here?
Is there anything other than dose reduction IF my platelets get down to a dangerous level?
Is 50,000 or 25,000 the 'dangerous level' in platelets?
Do platelets bounce around?

Thanks, I'm down, Bree

[iwillbeatthis]

Thank you Susan,
I am going to do that, move my lab day. I do like it that I am able to have weekly labs, that is reassuring to be monitored during all of this.
In a way, it was a blessing that my doctors seemed alarmed early with all of this, so that I am able to have those weekly tests. I appreciate your kind help and input.
Take care and I'll keep you updated.
Bree

[portann]

Hi Bree,

I did my tests on the same day as my evening injections, which is what the NP told me to do. Maybe you could also aim for doing it the same day as your shot.

Doing your bloodwork the day before or the day of the shot (but before the shot) may be just the shot in the arm you need now to get more reassuring results. Let's keep our fingers crossed.

It's okay to delay the lab work by a couple of days in order to align it closer to your injection.  

Like you, I was also monitored weekly (for the first three months), which is a bonus, keeping on top of things like that. It also gave me tangible evidence as to how some numbers bounce around.  My impression is that many people (excluding those on studies) do not do their labs as frequently.

So best wishes and ttyl,

Susan

[nygirl7]

What is going to happen is going to happen.  There are too many variables to even assume anything right now at week 3.  Take it from us you really do have to try and not be so obsessive about the whole thing or you are going to miserable for your entire course of treatment too busy worrying will make you weak and depressed - the two worse thing that can happen to you.

Try to walk away from it for a while and concentrate on getting to UND that is your priority of fear right now.  Let the neup do it's job and remember your numbers WILL bounce around. At week three my hemo literally crashed but you know what all the worrying in the world didn't do what the Procrit did.....fixed the situation and made it livable.

Agree get your CBCs the day before your IFN not the day after that probably will make a huge difference.

[portann]

Bree, I hadn't realized about your doc until Tashka mentioned it.

That's an important reason to look for input into any issues or concerns you have here and elsewhere.

An inexperienced doc who goes by the book and has a busy practice not focused on HCV can make bad decisions that a liverhead does not.

I've seen accounts of that here quite a few times and it didn't take me long to realize how lucky I was to have an aggressive doc who, by the way, dislikes talking to family docs because THEY panic and worry too much about 'bad' numbers. Yeah, I would have had one hassle after another but my hepa let me sink into territory that would have given my family doc a heart attack. He wouldn't send her the lab reports but sent them to me.

Anyway, good that you're looking out for all this and do remember to do your lab test just before the shot. It's odd that your doc didn't tell you to do that, as my NP emphasized that every time I saw her.

Hang in there and best wishes for an easy tx,

Susan

[spectda]

Hi Bree-

It's good for you to talk with the new hemo who seems very good and have an understanding of how she will handle potential issues with the big three, anc, hgb and platelets. You may never have to deal with the all of that, but in my opinion it is better to have an understanding with your doc from the beginning.  In this case I would choose the hemo to speak with because she seems willing to work with you.

I have seen several people have problems with their doctors inadequate knowledge of how to handle those issues. People would have a lot more success with treatment if they find the right doc, educate themselves about tx, and understood how the doc handles these issues right from the start.

There is a difference between having an understanding between you and the doctor, and worrying about every eventuality happening to you. I am not sure that is what you are doing or not.,If you are try to let it go or this tx will be absolutely miserable and it's generally difficult enough.

You can do this and we all want you to succeed. Just roll with it a little and have faith that it is unlikely that all the issues will happen to you and not be able to get resolved. low hgb and anc are able to be handled with rescue drugs, so you can put them off the worry list. As Trinity mentioned, you can't control the platelets. but you are not close to having a problem with them now.

As others have mentioned you don't need the added anxiety and need to save your energy in case anything real has to be dealt with. None of your numbers are dangerous at this point including your platelets. Some docs would not have given you neupogen at .7 (700) anc.

Soon enough the weeks and months will have gone by and you will be well into this. Before you know it, you will be through. Take care of yourself and treat yourself well physically and emotionally.

I wish you the best through all of this, It's like white water rafting. You can't fight the strength of the water, you take the ride, hang on, and go with it!

take care Bree,
dave

[iwillbeatthis]

Trinity yes you are right, we can't control our platelets. But we might be able to control the situation a little indirectly by getting with a more knowledgeable, more aggressive hemotologist, which I did, and in the long run, might ultimately end up making a big difference in my tx. So knowing as much in advance can only be helpful.
Bree

[Trinity4]

Tashka, you can't be on top of low platelets.  That's one thing in treatment you can't control other than by the options I listed.  They don't give people who are treating for hepc platelet transfusions or that medicine used to increase platelets.  Lets hope the hemo can pull some rabbits out of her hat if it is necessary.

Trinity

[iwillbeatthis]

thank you Tashka. I'm not sure why some others here don't just understand what you said before you said it. I'm am treating with a doctor who is NOT as up on Hep C as I thought, and the hemo almost OD'd me on Neupogen. The fact that I didn't just kick back and be cool and do as I was told probably avoided a big problem for me.

Geeze, I'm on my 3rd shot, I just had a couple of issues.... the obsessive preoccupation remark was a bit much.... no biggie though, believe me.

Bree

[tashka]

Guys, she is treating with GI doctor who obviously is not very experienced with hepatitis C, does not feel comfortable with aggressive approach, and sends her to other specialists to manage side effects. Of course, she is concerned. It is natural. And she almost got overdosed on neupogen by hematologist who doesn't know what he is doing.

I would definitely advise her NOT to relax, and to be on the top of her treatment and what her doctors are doing. By this I don't mean to be obsessive. But I myself worry about everything. It is hard to just stop worrying, especially in a situation like that.

[Trinity4]

Nobody needs to know you well enough to suggest options or give advice.  What we do have is collective experience in these areas.  Putting the cart before the horse solves nothing.
Yes, you can prepare mentally for anything but the reality is physically you can't do anything about low platelets except dose reduce. What seems to be suggested by other members is doctors have different thresholds at which they will dose reduce.  Right now, you're in no danger of that but if it should happen you have two alternatives.  One being you are in charge of the medications and you'll comply or you won't.  If you don't and the platelets continue to drop you'll probably be told to skip an injection.  If you don't skip an injection and your platelets continue to drop your doctor will probably not write a script for the interferon and you'll have to stop treatment.  That's pretty much it but again, cross that bridge if you have to, otherwise I don't know of any additional preparation you can take.

Trinity

[mikesimon]

What I have been seeing is an obsessive preoccupation with every possible scenario. If that makes you feel good then fine - keep going. Many people I have seen do that tend to tire themselves out and are less prepared to deal with real issues if, and when, they arise.
I won't offer my opinion again. You've apparently got it all figured out just fine.

Good luck,
Mike

[can-do-man]

I think mikes suggestion that you try and relax is a very good one, stress alone is not good but alot of stress on tx can be hard on the ole ticker, i'm cirrhotic so i have low platlets anyway, on tx they got below 30,000 then bounced around on their own. Never had a dose reduction........... Best to you

Cando

[iwillbeatthis]

I'm feeling fine and I'm doing pretty good. I don't think you know me enough to suggest that I relax, but I do thank you for your input. That's what I'm looking for.
That helps me to know your experience, so I can compare stats and situations.
And yes, not only does it seem reasonable and responsible to try and prepare for things I am already facing, it is.
Thanks,
Bree

[mikesimon]

I think you'd be better off if you could relax a little. I know from your perspective it seems very reasonable and responsible to try and prepare for every eventuality. But, it really doesn't help because we can't predict this stuff. I don't think there is a lot of reason to expect that you'll have to reduce or discontinue. That probably depends more on your doctor(s) than anything else - what are they comfortable with. I treated with a very low platelet count and my doctors never even mentioned it.
From what I have seen your numbers look pretty good. They're better than mine were when I treated and I finished treatment successfully.

Good luck,
Mike

[Trinity4]

:o)

[uncledudeness]

my platelets are now at 87k down from 96k in march. i haven't started tx yet, as they are testing me for AIH. my alt/ast levels are high too. they want me to see a hematologist as they are considering putting me on eltrombopag to boost my platelets, as it is FDA approved for ITP. from what i read, it's not to easy on the liver. the nurse did say that the cut-off for SOC is around 40k. i have been noticing that the petechiae on my legs is getting worse.

just thought i'd throw my 2 cents worth in.

good luck with the tx.

[iwillbeatthis]

I didn't say the sky was falling. I was merely planning for the if's, which is what one should do to be prepared.
That and asking questions.

[FlGuy]

With platelets at 79 the sky is nowhere near falling.

[iwillbeatthis]

One other question, does anyone here have experience or know of any information if and when someone has to dose reduce to say half Pegasys shots, what are your chances of clearing the virus with GT-3. Does this every happen?

[iwillbeatthis]

I see, and I'm rolling with it, believe me. I just hope my new hemo along with my GI don't freak out before they should.
If someone's plts go to those dangerous levels, and you skip a dose or cut one in half, do plts 'normally' come back up, and how long do they stay up? Meaning, do some people just have to keep skipping a dose if plts just keep going down, or would you just be pulled from tx? How common is this scenario?
Thanks,
Bree

[Trinity4]

My platelets and ANC tanked early too.  Both went up and down.  The platelets finally leveled out to between 50,000 - 70,000 for the duration of my tx but the ANC never did climb back up to an acceptable level which was my doctor put me on Neup.  It's not uncommon, you just have to roll with it.  An aggressive hepa will usually not dose reduce the peg with a platelet count of 50,000.  My doc didn't get concerned until platelets dropped to the 20,000's.

Trinity

[iwillbeatthis]

thank you Susan, I copied your info, yea I'd be lying to say I'm not worried.
I just wish this all hadn't happened so early on, you know? but like Dave said, maybe they'll level off? It's all very stressful. I was handling the tx so well, I didn't have the awful sx that I've heard about, which did surprise me. And today? I feel great. You'd never know I was on tx. It's just the ANC and Plts that are trying to screw things up for me.
Thanks for your help, and I'll keep you posted on what happens.
Bree

[portann]

Hi Bree,

I see you had your blood work done almost right after your interferon shot. Next time, try doing the blood work just before your shot and your results may look better.

Are you taking Pegasys or Pegintron?

Docs have different thresholds they're comfortable with, so it is a good idea to find out now what your doctor's threshold is.  

It's risky to operate outside guidelines but many experienced hepas do. Mine would have dose-reduced in the thirties but I think that's considered aggressive.

Platelets do bounce around, so if you're lucky, they'll go back up. And remember to do the bloodwork as close to the shot BUT BEFORE the shot, not right after.

Here is some info from a treatment handbook, concerning ranges and tips:

"GRADING OF THROMBOCYTOPENIA

Normal: 150,000 to 400,000 platelets/mm3
Mild: 50,000 to 150,000 platelets/mm3
Moderate: 25,000 to 50,000 platelets/mm3
Severe: <25,000 platelets/mm3

PREVENTIVE STRATEGIES

1. Assess for thrombocytopenia by monitoring CBC and platelet count at baseline and at weeks 2 and 4, and then monthly in all patients receiving anti-HCV treatment. Note:
lower platelet counts will be recorded when a CBC is obtained within 24 to 72 hours
of peginterferon administration. Consider drawing the CBC 1 to 2 days before
peginterferon administration.

2. Assess previous or current medications and/or diseases (eg, idiopathic
thrombocytopenia) for potential or significant thrombocytopenia.

3. Assess for other factors that may contribute to low platelet count (ie, abnormal
hepatic/renal function, sepsis, fever, anticoagulant therapy, aspirin use).

4. Teach patient to report any evidence of spontaneous or excessive bleeding, including
petechiae, ecchymoses, hematomas, blood in body excretions, bleeding from body
orifices (especially from nose when sneezing), or changes in neurologic functioning.

TREATMENT STRATEGIES

1. Dose modify/hold drug until platelet count recovery, or discontinue per package
inserts.

Peginterferon alfa-2b dose reduction by half is recommended for platelet count
<80,000/mm3, and discontinuation is recommended for platelet count <50,000/mm3.

The peginterferon alfa-2a dose should be reduced to 90 μg if the platelet count is
<50,000/mm3 and should be discontinued if the platelet count is <25,000/mm3.

2. Consider platelet transfusion (rarely necessary).

Patients should be instructed to:
1. Avoid activities predisposing to trauma or injury.
2. Avoid use of aspirin or aspirin-containing products.
3. Use electric razors rather than blades.
4. Blow nose very gently.
5. Use soft toothbrushes (not electric).
6. Promptly report any difficulties with constipation; avoid straining.
7. Apply continuous pressure for 5 minutes if observable bleeding occurs (ie, knife cut).
8. Observe and immediately report to healthcare provider any bruising, skin problems,
blood in urine/stool/emesis, vaginal/rectal bleeding, blurred vision, headache, or
disorientation.

http://www.projectsinknowledge.com/init/G/1628/1628-Handbook.pdf

Hope this helps...I'd be worried, too, but if you're lucky, they'll bounce up and maybe timing your next test before your shot will also help.

Hang in there...always lots to worry about when we go through this tx but we just have to carry on, one step in front of the other.

Best to you and good to hear from you again,

Susan

[iwillbeatthis]

Thanks Dave, I know you are right, sound advice, I will not worry tonight, and I will just hope for the best, hope my levels get used to all this, and do the right thing!
Take care, talk to you soon,
Bree