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1118724 tn?1357010591

Sorry, Ignore the first " VL test back ... " post

Sorry, the previous post was goofed, the excuse is in my attempted corrections. Here is how it should have read.

I'm be short today. Actually talked to the real doctor today. First takeaway is ... VL tests are in, done in week 10. As it reads on the printout ...

" HCV RNA BY PCR = <43 "
" LOG OF HCV RNA = <1.6 "

this paragraph was goofed beyond repair ... is "<43" good or not?

Out side that. WBC coupled with PC is his big concern. I brought up the ANC number but he didn't really respond to it. Didn't push it, I want back in. He's willing to put me on Neup ... under this condition. One more CBC blood test, the WBC must rebound, guess the PC also. The blood draw will be done 03/01. He indicated then I'll start Neup and treatment again.

I asked if this means treatment starts again at week one, he said no, the first 10 weeks would still count. I don't know I like that, but first get back in. If need be I'll fight for the 10 weeks on the back end of treatment.

By your help, support and knowledge, by pushing it a little, if the body cooperates, instead of a month off we may have shaved it down to 'just' two weeks.
17 Responses
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1118724 tn?1357010591
Too late on the continuing despite him thing. Tomorrow will be 2 weeks since my last shot. Also I go in for a blood draw, and eval of it, hopefully some Neup as promised.

My diet .. hummm... it's ... uh ... unsophisticated at best. Here's where I was coming from. High fat, gumbo's, some meat, few veg's. My joke was I didn't like anything green or orange. Salt! On everything. Surprisingly (or not since I'm always broke) no take out food/fast food. But you get the drift.

Now NO added salt, still eat sugar, it's the only taste left to me. Cut out meat, except for small portions of skinless chicken. I really have no taste for serious green foods. I kinda half try to gradually build into it. I eat block cheese. Couldn't stop all the bad stuff at once. Milk, 1% or less, depends. Plain Yogurt ... with a bit of jam mixed in .. cutting out what I have and never having been good at preparing meals, much less nutritious ones, it's been mostly ... I don't know ... ha, mostly don't remember ... bland, saltless, fatless (as much as possible) simple stuff, topped with cheese! Waiting for it to get warm enough to make smoothies (no added sugar, just frozen fruit, yogurt, banana's, apples, etc.)
And Shame on YOU! ha, just kidding .. I had started back on big salads then a week or so ago you told me about vinegar liberating iron ... sigh ... been searching for vinegarless dressings, most seem to have lemon juice as a substitute ...

Have checked out cookbooks for diabetics, picked out some ... not good in follow up yet ..
Helpful - 0
233616 tn?1312787196
so for 30 years he's been ignoring patients, not ordering tests in a timely manner...letting underlings make decisions and behaving impersonally when life and death are what's at stake. Sounds like your GI and my GP both graduated summa *** lameo.

I'd opt to put an add inthe FORUM begging someone to send you a INF syringe if they have an extra. Not to let the so and so have his lazy way.

as far a platelets go, lots of ways to increase naturally these...I use blueberries, and alpha lipoic...some sites for fols with ITP have lots of suggestions for increase...lowering sugar and saturated fats etc.

If you do have to start tx over, or you relaspe or rebound because of all this, I'd definitely suggest you get another doc. 30 years has not improved him, it has jaded him to the point where who succeeds and who fails no longer matters. It happens...sounds like burn out to me....it's more dangerous to you as the patient than is inexperience. Given my choice, and considering a 30 years experienced doctor is who put contaminated plasma in me, when I specifically said no blood products....I'd say run do not walk to the nearest younger educated doctor.

Search for someone bright but not burnt out. I search for docs based on a couple of criteria now...one is, I run searches for those who graduated summa or magna *** laude....for starters...it means they were paying attention at least during training...something your doc is obviously not doing much of. Frustrating.

try posting a plea for INF....lots of folks stop tx and have extra shots or riba laying around. Obviously you need to improve your platelet profile.
try googling increase platelets naturally....tell me what is your diet is like??
Helpful - 0
92903 tn?1309904711
The word on nunneries:

Pent-up demand.
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Avatar universal
"You know what? His 30 years experience and my ding-a-ling wouldn't get you an extra slice of toast at a nunnery! "

I would have assumed your ding-a-ling on it's own wouldn't get you an extra slice of toast at a nunnery either.  No offence to your ding-a-ling or anything .. just it IS a nunnery.  Now...your ding-a-ling might get you a heck of alot more at a priestery...
Helpful - 0
92903 tn?1309904711
.. he turned halfway back to me mumbling about "... we have 30 years experience .. "

You know what? His 30 years experience and my ding-a-ling wouldn't get you an extra slice of toast at a nunnery! Low ANC requiring Neup intervention is nothing new or exciting. Most liver clinics take it in stride. With me I did a draw at 9AM and by 2PM the nurse called to say they had ordered Neup.... it's very commonplace.

Platelet  counts are a more touchy subject....  many experienced liver docs will let them go below published guidelines. If you are heading into the warning area, I'd check with your doc on where his pucker point is. Many will let them get down into the 25-30K range.... and I needed that latitude to get my SVR.

I don't want to discourage you but this guy worries me. Espeacially that he got his 30 years of accumulated dander up when questioned by you, the star of this show. I see a second opinion in your tea leaves.    
Helpful - 0
717272 tn?1277590780
James, I'd try not to worry too much about the break, What's done is done.  You will be relieved to get that first UD PCR after resuming the meds.  I used neulasta (pegylated form of neupogen) and was told that it worked in hours.  I always went back next day for labs to verify that it worked and had WBC's of 13 the first use, 12 the second use; keeping me safe for a month.  Neupogen must be used more often than neulasta but effect should be the same.

Willing - eltrombopag is a platelet rescue drug.  It is not labeled for HCV TX but I have heard of a few people having it prescribed off-label and one eltrombopag trial.  It is pretty uncommon to prescribe it for low platelets.  Dose reduction of IFN instead is used for low platelets.  IFN reduction also allows neutrophils to recover.  Dose reduction is unnerving for patient but in my opinion, once the IFN is really doing its job it just keeps charging along doing the job even if you are adding less.
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Avatar universal
On your doctor...wow.  There's that sigh again on my part. Good thing you're going in armed with some knowledge.  If this guy has 30 years experience, where was your 4 week viral load test?  That's like a mechanic who has 30 years experience but who's work on the newer models isn't up to par because he hasn't kept current.  I'm sorry, don't mean to be negative .. it's just that if this guy is truly your only choice, better to know what you're dealing with so you know what kind of approach you'll need to keep taking.

willing:  "The main question is whether, after 2+ week break, depending on when exactly you restart, you can continue to count the first 10w towards your total sentence. I'm pretty sure no one can answer that without guessing. One option might be to ask them to do another VL on 3/1. If there's been no breakthrough continue per plan, otherwise assume it's a do-over."

That sounds like a plan to me.  And I'd agree also about checking on the fine print on the PCR.  While you're at it .. as you go along ... ask for copies of your CBC's and your PCR's as you go along and the most recent ones and track your own progress.  Sounds like they'll get their back up but what the hey.

I'd be prepared to be on the horn to one of those numbers about the neupogen, just in case.  

A step at a time......

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Avatar universal
access to the neup is unarguably good news because if your WBCs dropped that low they're likely to do so again. And the strong response to  the ifn is great news; many F4s are not so lucky (though you should still check the fine print on that particular test to confirm that lt 43 = und).

The main question is whether, after 2+ week break, depending on when exactly you restart, you can continue to count the first 10w towards your total sentence. I'm pretty sure no one can answer that without guessing. One option might be to ask them to do another VL on 3/1. If there's been no breakthrough continue per plan, otherwise assume it's a do-over.
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1118724 tn?1357010591
ha, ya, GoofyDad made a good jump, and of course you prolly knew already, none of this, him, nurses, admin, the hospital in general have done much to inspire confidence. Here's yet another example.

You said "... because I think that UND went in your favour to have him consider the neupogen .. " Welllll yes it did BUT ... he came in with my folder, thick with unimportant redundant infomation, was thumbing through it literally mumbling " .... why are you here ... " Armed with info from here, I start in .. he turned halfway back to me mumbling about "... we have 30 years experience .. " .. " ... infection .." he was in the process of shooting it down!

I thought well ok. I knew about the ANC. That seems almost unarguable .. Then I told them they did a VL test at the same time .. his head snapped back to the folder, turned pages, found it, mumbled ... I thought I heard und ... without a doubt he was impressed with the results " ... you are responding very well to treatment .. " My impression was he didn't KNOW beforehand the test had even been done. Then things changed.

As far as what happens on 03/01 .. well, Neup fer sur, not so sure about the rest, presume so, simply because he wants the CBC done, evaluate it for WBC - PC. In the meantime, I presume, they are contacting the Neup people to have it at the ready. I have one shot left so I could start that night with the go ahead.
  Remember originally it was going to be a month before doing another CBC, now it will be 'just' 2 weeks. The reason given for the month was to allow my counts to rebound. Maybe they rebound some by Mon. maybe not. Generally speaking how fast acting is Neup? hours days weeks? has to build up over x number of shots?. I don't know, it could go a number of different ways, no need to work it out here. If nothing else I'll push for at least a reduced dose starting Mon.

What do you think of this ... Yes it will be 14 days since last shot .. But ... The shot is timed for 7 days with Riba boosts ... in theory I should have been good for that week ... What I really will have missed is the Mon to Mon of this week?  Wishful thinking?
Helpful - 0
Avatar universal
"Out side that. WBC coupled with PC is his big concern. I brought up the ANC number but he didn't really respond to it. Didn't push it, I want back in. He's willing to put me on Neup ... under this condition. One more CBC blood test, the WBC must rebound, guess the PC also. The blood draw will be done 03/01. He indicated then I'll start Neup and treatment again."

I asked if this means treatment starts again at week one, he said no, the first 10 weeks would still count. I don't know I like that, but first get back in. If need be I'll fight for the 10 weeks on the back end of treatment. "

First of all .... wooooohoooooo!!!  You're UND!!!!  That's awesome.  So you're responding to treatment and this is GOOD!!!!!!

As for the rest....okay....big sigh.....

Fair enough he'll do the blood draw on 03/01 (on Week 12?) but stopping treatment until then?  Well, actually - stopping treatment until your results come back in after the blood draw on 03/01 or you start again on 03/01?   I think you're actually lucky he did a blood draw on Week 10 because I think that UND went in your favour to have him consider the neupogen and going back on treatment since you're obviously responding.

As for the long break in treatment...not a standard nor great approach.  I would have liked to see you on neupogen now AND back on meds to allow the neupogen to get started on your ANC and keep up the adherence that's so critical in that first 12 weeks in particular.  The lengthy break is not good and I find his judgment on this faulty.  I'd push hard on the fact that you're advanced liver damage AND you've obviously responded to treatment and you're UND, which is beating the odds already and it's worth taking a bit of a risk to start treatment AND neupogen same time, sooner than later.  

Having said that, with this doc, you're the one in this situation and this may be the best you can get and while it's not great, you've got the plan to fight later to extend treatment on the back end and it's a good plan B.  

Is the neup in place and ready to go?  Are they taking care of that?  While it's not great to have the break in treatment it's not the end of the road either ... and you're UND.  So.... here's hoping, James.  I agree with Goofy, not alot of confidence in this doc but he did go for the neupogen and some docs wouldn't have so ... I'm just going to keep hoping for you.

Trish
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92903 tn?1309904711
I'm juhst jumping in without reading the all the background - but from what I've gathered I'll say my confidence in your Doc is not high.
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1118724 tn?1357010591
Ha, thought being UND in week 10 would be a big deal. Still better than beating your toe with a mallet but not as much fun as I imagined.

If the standard is PCR tests at 4 and 12 weeks. The problem with interruption may not be a problem with regards to the 12 week pcr test since it's taken them 10 weeks to do the 4 week test! I mean it would be an unfortunate time to suddenly adhere to treatment scheduling. If they stand down for another 10 weeks I should be und again. Then this interruption is of no consequence as relates to 12 week VL milestone.

Thanks for the alert to the possibility of PCR testing too soon. I will have to make the case for delaying if needed. If that doesn't work I'll have to resort to old fashion lying (a thing I loath to do for several reasons) saying I'll be out of town, sick, someone else sick, etc. They will have to cut me off before giving in on that one.

Right now, need to get back in. Hopefully this WBC/ANC and Platelet thing will work out

Thanks everyone
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Avatar universal
you're right -  I missed  "The blood draw will be done 03/01. He indicated then I'll start Neup and treatment again."

IMHO this is NOT good. As I understood previous posts you're now more than  a week behind on the rbv and still less than a week on the peg. As noted earlier, that's likely not an issue for the rbv and still marginally  OK for the peg if you can move soon. However, another week w/o IFN or rbv seems a very bad idea at this point in the tx.

Many studies have documented that peg-ifn tx is superior to the older ifn injections. It's not because the peg does anything of itself,however it keeps the level of circulating ifn high enough  to avoid the low spots that occurred with the older every 2/3 day dosing.  A full two weeks w/o ifn is a great opportunity for a viral rebound  (dosing for the PIs has also underscored importance of constant anti-viral pressure).

If you don't want to lose the progress made over the past 11w it's important to do a refill.
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Avatar universal
" Either way you've had a very good response, but unless completely UND by w12 you'll want to talk to the Dr. about extending."

I don't see how a 12 wk PCR could be an accurate predictor unless his clinic is willing to test him during this interim.  He will have missed several weeks of peg & riba.  

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Avatar universal
well that's good news! not quite a happy ending yet, but definitely promising.

The VL results look good and should be a strong encouragement to push on (BTW  stay away from angle brackets in posts - they look like HTML tags and confuse the post parser; you can use lt and gt instead). Regarding interpretation you way want to look at an earlier post:

http://www.medhelp.org/posts/Hepatitis-C/Need-some-help-interpreting-HCV-RNA-by-PCR--Qn-RFX-Geno/show/951602

some PCRs including Taqman, will report detectable HCV RNA at a level too low to be quantified (basically the test turns to a qual rather than a quant at the very bottom of the range because quantification is not reliable) and this can be reported as lt 43.  Checking the specifics of  your particular test should clear that up. Either way you've had a very good response, but unless completely UND by w12 you'll want to talk to the Dr. about extending.

I was also under the impression that platelets were not responsive to rescue drugs as newleaf points out, but did notice that in the remediation summary from that review I posted earlier

http://www.aafp.org/afp/2005/0815/p655.html#afp20050815p655-t3

they included eryth as a platelet remediation factor. A typo ? Anyone else seen it used this way ?
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717272 tn?1277590780
That is the way the neupogen works; they will want to look at your blood right away to see if you responded by producing extra neutrophils.   If you did, they can restart your interferon without worrying that it will just drag you down too far and they'll have to stop you again.  Occasionally, people don't respond to neupogen with extra production, but I think that is rare.  Once they establish that it works for you, they will call you and say to take a neupogen shot this time (after getting bloodwork back with low neuts).  I always had to go back for a lab the next day to verify that it worked.  Just the process with using that rescue drug.

There is so far nothing that can be given to stimulate platelets, so they will still dose reduce you to manage them being too low.  You are CLEAR now, so try not to worry about reduced interferon hurting your chances.  I was anxious about the first one or 2 PCR's after IFN dose reduction but never went detectable again and then stopped worrying about it.  I spent 2/3 of TX on reduced interferon for low platelets.  SVR now.

I'm hoping you have turned the corner and will be able to stay on TX without the fear of being yanked anymore.  And don't worry about the dates.  Good luck with the rest.
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Avatar universal
Ok James, so that means you were UND at week 10.  The limitation of the test was <43.  If that is the case you have responded very well to treatment.

I wish you the best going forward.  I think most of us have given you sound advice so you pretty much know what lies ahead.  I have to be honest here and I really don't like the fact that if you do start back on treatment you will have missed 2 or 3 weeks of interferon and riba but we do what we have to do.  Just make sure all the necessary arrangements are in place so the Neupogen will be available if and when you need it.

Trinity
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