lots of problems

Hi all.

I haven't been posting and responding mainly coz I'm so darn weak.  I just did shot 13.  Haven't seen labs for the past 3 weeks (Labcorp stopped sending them to me) but I broke down and called the Doctor's office last week and the receptionist said my vl was down to 3850 at week 11, from a starting VL of 1,400,000 or thereabouts.

That's an almost 4 log drop from pre-TX levels.  (I'm 1A, stage 1 grade 1, slated for 48 week tx)  

I see the doctor on Wednesday and will ask him about the terrible weakness and  new sx include nausea, dizziness, loss of apetite.  I wonder if that's because of dropping hemoglobin but since I haven't seen the bloodwork results I don't know if it's related.

I'm on the neupogen twice monthly.

Has anyone else experienced a drastic change for the worse in SX around the three month mark?

In retrospect, compared to how I felt the past two weeks, the first 10 or 11 were a breeze.

Thanks in advance for any advice.

[jmjm530]

Sorry you're not feeling well. Definitely call Monday and find out what your hemoglobin and ANC are. If your hemoglobin is low, you can then be prepared to discuss the helper drug, Procrit. It's also possible that the Neupogen is causing some of your symptons. Don't know what your ANC was when you started, but many doctors wait until ANC is 500 or even down to 200-300 before prescribing Neupogen. If your ANC looks good, you might want to discuss trying to go without with frequent monitoring. In fact, frequent monitoring -- weeklyu or even twice a week -- is reasonable until your critical values (hemoglobin and ANC) begin to stabalize. You probably should also ask for another viral load test which would be week 13, if I calculate correctly. It will give you more information as to when you become non-detectible and that will help determine treatment length. Best get as sensitive a test as possible, like Heptimax from Quest Diagnostics that goes down to 5 IU/ml.

Be well,

-- Jim

[bobbyullc]

sorry that is a 2.55 log drop unless it was 14,000,000 at start. that would be 3.55log
i had many of those sides all through tx in differant levels. hang in there.

[wyntre9]

Thanks both.

Jim,

Could you explain the way you cite your ANC numbers?  My counts don't sound like the ones you're using.  Anc went as low as 1.7 on my labs and that's when the Dr. put me on neupogen.  (Platelets and neutrophils also dropped but I don't remember those numbers)

I just had 12 week labs on Friday and will get the results during Dr. visit on Wednesday.

The nausea, dizziness are new sides although I've been doing neupogen since about week 4.

I'm also getting lots of sinus infections but that's nothing new for me.  Seems like I've had one long infection for the past two decades.  :(  

Elaine, I had no appetite problems until the past week or two.  Now the thought of eating almost anything makes me ill.

I wonder if I'm feeling worse coz the meds are kicking into high gear?  Is that possible?  Could it be coz I was a slow responder?

This definitely stinks.  I can't even think clearly anymore.  That's the other reason I haven't been posting.  These days I can barely manage to come up with more than one or two coherent sentences.  

So, Elaine, your son was like this the ENTIRE first TX?  How AWFUL!

Jim, I know you did 48 weeks - was any part of the TX much worse than the rest?

Or was it all *!#?

And, Elaine, you're right.  Compared to how I'm feeling now, I WAS doing really good!

[wyntre9]

"sorry that is a 2.55 log drop unless it was 14,000,000 at start. that would be 3.55log"

You're right, DARN!!!!

Starting was 1,140,000 and week 11, March 9, results (according to the receptionist) was 3850.  I questioned her 3 or 4 times to make sure she was reading it right.  But, who knows - when i get the lab copies on Wed. it could turn out that she read the wrong thing!

I don't know WHY Labcorp stopped sending copies to me.

"i had many of those sides all through tx in differant levels."

48 weeks, right?  Were any months worse than others?

[Htownwife]

I'm so sorry to hear you're suffering so badly!! My hubby has been like this, off and on throughout his entire treatment. I don't know why you get dips like this...but it must be related to your blood counts.
He never got low enough to be put on procrit or neupogen, but it was touch and go  most of December and January. He lost a total of 50 lbs, couldn't eat because of nausea, and also the chemical tastes and smells of food made eating an extreme challenge. He also had weakness and dizziness like you're describing.
He's doing well right now, but it's week 42 and this is probably the best he's felt this entire time. It's really weird....but I'm beginning to think he's feeling better because the end is getting near and his whole outlook is getting better.
The doctor told us that the side effects would be worse at the beginning and after a while he'd probably get pretty used to them. But that didn't happen in this case. He had good and bad days that seemed to come for no rhyme or reason.

I'm glad you're talking to the dr Wednesday.This is such a tough ride! Just know I'm praying for you and hoping you start feeling better soon!!
If you want me to I'll post what my hubby was able to eat while feeling like you're feeling right now. I really think forcing himself to eat what he could helped him climb out of the pit he was in Dec. and Jan.  
    

[jmjm530]

Maybe this will help. My ANC (neutophils.absolute) are expressed in "cells/mcl)" on my Quest lab report. The normal range is 1500-7000 cells/mcl. Using this reporting scheme, many experienced liver specialists don't intervene with Neupogen until ANC is 500 cells/mcl, and some, like mine don't intervene until it drops to 200-3300 cells/mcl and stays there.

When you say your ANC is "1.7", I just assume it means 1700 cells/mcl, but please double check. If it is 1700 cells/mcl, then I have no idea why you're taking Neupogen, as your ANC is not only far away from any intervention point but actually in the low normal range. But maybe we're not comparing apples to apples here so it's important you find out what your values are and how it's reported.

Is your doctor a liver specialist (hepatologist) with lots of experience treating Hep C populations or a Gastro? I can't understand why any liver specialist would prescribe Neupogen at 1700 unless, of course, we're not looking at the labs correctly.

-- Jim

[jmjm530]

Forgot to mention that it's always a good idea to have a copy of your own lab reports and keep it up to date. Like many here, I had mine faxed by the lab and often had results before my doctor.

-- Jim

[wyntre9]

Can you BELIEVE I got it wrong?  hahahaha

The last lab report I have with bloodwork is from the beginning of February.

(I'm fighting with Labcorp to send me results but I can only stay on hold for so long. . .)

WBC  1.7  (ALERT)

Neutrophils  0.8  (ALERT)

Lymphs 0.6  LOW

Platelets 136  LOW

and slight ovalocytosis.  Do you know what that is?  I looked it up online but can't figure it out.

That's when Dr. put me on twice monthly neupogen.  Prior to that he'd sent me to a hematologist who gave me neupogen two times.  Now I self-inject.

Since I have your attention - you've posted about sensitive VL tests.  The kind I get is from Labcorp.  It's called the HCV Quantausre Plus (non-Graph)Hepatitis C Quantitation.

Is that a sensitive test?

Thanks Jim

[wyntre9]

"My hubby has been like this, off and on throughout his entire treatment. I don't know why you get dips like this...but it must be related to your blood counts.
He couldn't eat because of nausea.. . . He also had weakness and dizziness like you're describing.
He's doing well right now, but it's week 42 and this is probably the best he's felt this entire time."

Thanks for sharing, HT.  Every story helps.

"The doctor told us that the side effects would be worse at the beginning and after a while he'd probably get pretty used to them."

What the H*ll do THEY know?

"But that didn't happen in this case. He had good and bad days that seemed to come for no rhyme or reason."

Me too.  The first two months there was a sort of schedule - Felt awful 3 to 4 days after the shot and then had a few good days.  Now it's completely unpredictable except for the feeling-bad-most-of-the-time part.  :(

[chcnme]

Hi Wyn.  I am SO sorry you're feeling so lousy at this stage  (at any stage for that matter)  but it seems particularly cruel to have felt relatively OK in the beginning and to now  (well into treatment) begin feeling particularly lousy and weak.  :(   I hope whatever's causing it that you'll be feeling better sooner than later and on the UPswing side and finished with this treatment.   You hang in there!  

[wyntre9]

This is exactly WHY I haven't been posting.  I forgot to answer the second part of your question.  I'm so confused!

"s your doctor a liver specialist (hepatologist) with lots of experience treating Hep C populations or a Gastro?"

He's a gastro with lots of experience treating Hep-C.

"I can't understand why any liver specialist would prescribe Neupogen at 1700 unless, of course, we're not looking at the labs correctly."

How kind of you to include yourself in the possible communication error.

I take FULL responsibility.  I was wrong, as usual.  (That's the other reason I haven't been posting)

Thanks, Chcnme.

I'm hoping it's just a temporary blip coz I can't imagine being like THIS for the next 35+ weeks.  

[GrandOak]

How's your Hgb?  I never really experienced fatigue from low ANC, but low Hgb really rocked.

I'll pass on the 3 month tx question as my first tx botched mine and I was switching docs about that time in my journey.  I hope that you're still at full dosage of meds though as I believe it had an impact on my attempt at tx.

[orphanedhawk]

I've been missing you. Sorry you've got the sx uglies.
    I'd love to have your numbers. Mine are still much lower. I got hit with those nauseous side effects and bone aches at 7 weeks. Then they lowered my dosage and it helped, some. I find hot cereal stays down the best. Eat slowly. If you can't eat, make smoothies. Kalio 1 knows some good supplements for helping you with your nutrition if you can't keep your food down.
    For your brain, what is your ammonia like? If the levels are high you can take lactulose. It cleared a lot of my brain fog.
   I've had trouble with labcorp also (and quest). If it says that you are to get a copy on your order, call them and make a fuss. I've found the labs are better at faxing. If you don't have a fax # you can use, try www.efax.com
   If there isn't a place on your order saying to get you a copy, call your doctor and have them send another. Make a fuss. I know this is hard when you are fatigued and your mind is a mess.
     Sides come and go. I thought I was finally adjusting and getting some energy, then last week BAM, last week was the pits. This week is much better.    OH

[jmjm530]

That sounds more reasonable, but ".8" (800 cells/mcl) is still no reason for Neupogen, according to many liver specialists. As stated, "500" is more common and many let it go down to 200-300. My ANC went to 320 one week and was over 1000 two weeks later by itself. No Neupogen. It would be a shame if  Neupogen is causing you a lot of side effects and that you may not need it. As to the test, I'm not familiar with all of LabCorp tests, but my guess it's sensitive enough. You should be able to find the sensitivity on the lab reports you supposed to have a copy
of :)

Be well,

-- Jim

[wyntre9]

It says;

This test measures HCV RNA in International Units (IU) per mL using real-time Polymerase Chain Reaction (RT-PCR) technology.

It quantitates HCV RNA from 10 to 100,000,000 IU/mL.

Does that mean it's sensitive to 10?  Is that OK?

My Dr. called me 2 or 3 weeks into tx, as soon as WBC and neuts were low and had me see a hematologist.  Then, coz I do weekly labs, he said that based on the bloodwork numbers he thought I needed the neupogen regularly.

First he wanted me to make regular appointments with the hemo but I balked at that as it's yet another Dr. visit so he wrote a script for the neup and I pick it up with the peg and the riba.

My Dr. is a gastro but he sees hundreds of patients (I'm in a VERY densely populated area) and he was written up as one of the top 100 Doctors in the state and he really went to bat for me over disability, without which i wouldn't be able to treat at all coz I'd have no income and no insurance.

I've been taking neup for 2 months and I haven't felt the way i do now until a week or so ago.  

Then again, it's the start of Spring Allergy season.  

I was just wondering if other people have felt a SIGNIFICANT sudden worsening of symptoms after a couple of months.

But thanks, as always.

[wyntre9]

"Sorry you've got the sx uglies."

Yeah, that's a perfect way to put it.

"I got hit with those nauseous side effects and bone aches at 7 weeks."

Thanks for letting me know.  Nausea is new for me.  But, as I THINK I recall, you're G2, right, and on 24 week tx, and and early responder?  Right?

Maybe I'm just having delayed reaction.

"For your brain, what is your ammonia like? If the levels are high you can take lactulose. It cleared a lot of my brain fog."

I don't see ammonia on my lab report.

"About labs . . ."Make a fuss. I know this is hard when you are fatigued and your mind is a mess."

You got THAT right!

"Sides come and go. I thought I was finally adjusting and getting some energy, then last week BAM, last week was the pits."

That's what happened to me.

"This week is much better."

So there's hope for me?   (Don't answer that.)  

Any sign of the Red-tail?

[wyntre9]

"How's your Hgb? I never really experienced fatigue from low ANC, but low Hgb really rocked."

Hgb from 2/9 labs was 12.1 with 11.5 to 15 being normal.

I haven't seen any labs since 2/9 coz labcorp stopped sending them even though every week I fill out paperwork to get copies or the tech inputs that request into the computer.  

Hawke is right about energy levels.  I can barely GET Up in the morning much less make phone calls to people who put you on hold for half hour plus and even then you can't get through to a real person.  But my Dr. does give me copies when I see him so I'll get the reports for the past 3 weeks on Wednesday.

"I'll pass on the 3 month tx question as my first tx botched mine and I was switching docs about that time in my journey."

Ya know, I'm trying not to whine coz I KNOW how hard some people have had it.  But I do feel very isolated . . . and not even having had the energy to post or even read much in the past week has been difficult.

"I hope that you're still at full dosage of meds though as I believe it had an impact on my attempt at tx."

Still on regular dose, 180peg, 1000 riba and 480 neup.

[bobbyullc]

i had up and down months. the last month was hell because i was so tired of feeling lousy.
if you are only a 1 - 1 stage do not sweat it. if it gets too bad stop and wait for shorter more symptom free tx. you are in a good spot.

[wyntre9]

I've thought of that, too.  The problem is, I don't know if I'll ever be in a position to be able to AFFORD TX again - especially with regards to insurance.

And even if I was, I don't think I would go through it.

"i had up and down months. the last month was hell because i was so tired of feeling lousy."

You did 48 weeks, right?  DO you remember which months were especially bad?

Thanks for you help.

[wyntre9]

Thanks both.

Hawke - trying real hard with the humor but . . .
And I agree with you, BTW.

Bob,
Not gonna stop for that very reason - it would be a shame after 13 weeks - but MAN, this is rough.

My battery's dead - gotta go recharge (sleep).

[bobbyullc]

i got meds FREE and i make a decent living. the tx in the future looks like it will be a much shorter duration and MAYBE soon it will be mono(only vx 950) but that is not clear now. it is a shame to have to stop after 13 weeks.

which where the worst. the sides changed from month to month ,some better some worse. i still have sides 9 months after tx.(46 weeks of tx).luck.
bobby

[orphanedhawk]

The hawk's are doing mating circles. That beautiful pair of redtails won't let the orphan return. I assume she's still hopping around eating road kill and little critters. I'd go look for her and hang around but I have this energy problem.
   The weather is nuts. Suddenly wildflowers that usually bloom in May have burst into flower and seed in a week. It looks like summer is approaching, fast.
   My husband just asked if I wanted any oatmeal and I started crying. " I want real food!" Is a plate of lasagne too much to ask? Oy.  
   I'm geno2 and I'm not sure what's going on with my wire road.( thats my viral load joke) I played phone tag with my nurse who  had me take a more sensitive test last week, down to 5. I'll find out what the heck is going on when he calls with results.
   Try to keep your humor wyntre. It is a saving grace:)
  

[Forseegood]

don't have much to add except that I hope you feel better really soon, what goes up must come down huh? then up again...hope by the time youre reading this youre already feeling better...take care...

[rosebud57]

hi,
just checkin in sorry you feel bad. of course i hope better days come your way.

[GrandOak]

I did not mean to imply you are whining, I just know how depressing tx can be sometimes and didn't want to discourage you with where I was at when I hit the 3 month period because my initial doc loused up my tx and may have compromised my entire first attempt to endure it.

[wyntre9]

OH YEAH????

WELLLLL . . .

I did not mean to imply that YOU were trying to imply that I was trying to Imply that I thought You were trying to imply that you thought I was whining!!!!!

hahahahahah

My skin is WAAAAAAy thicker than that, GO!

But thanks for taking the time to clear THAT up.  :)

See, this really is why I haven't been posting - I'm soooo horribly inarticulate these days.  

But i'm the kind of person ya really got whack over the head with a sledgehammer -
I don't usually take stuff too personally unless I'm having one of those woe-is-me-i-can't-go-on-for-another minute kind of days - like all of last week - in which case I try to SPARE everyone else as much as possible.

GEEZ!!! I gotta go take a nap now.  This communication thing can be is exhausting!  *LOL*

[wyntre9]

Thanks guys,

I feel much better today.  Maybe it's that I NEED the neupogen more often.  I had shot on Saturday.  Had been feeling lousy since last Tuesday.  Will talk to my Dr. about it Wednesday.

Thanks again for taking time to pop in.  It means a lot.

Who else but folk on forum would put up with these (med-induced) mood swings?

I appreciate everyone's patience.

But just to give you all a laugh, I went to see my (new) therapist_ today and he didn't show up for the appointment.  Didn't even bother calling me.  Guess I'm officially the patient from HeLLLLLLL.   hahaha

At least I have Forum.  

Maybe I should try and get my insurance company to remit payment to you guys!!!!  

IMHO, it would probably be money a whole lot more wisely spent.

[Tater-ToT]

I'm sorry to hear you haven't been feeling well... looks like TX has been kicking you butt as of late... I hope you start feeling better soon...!!
Hang In There!
;)

[orphanedhawk]

I'm glad your feeling better today. Tx is like those 10 step programs, one day at a time.  As much as I complain about the neupogen I have felt better than before I was doing it. Not that I don't still bet the blues but I don't seem to get sooo far down. So maybe you need it more than twice monthly.
   Ironically Rev gave me the best advice about sx, "they don't last."
   BTW: Two vultures have taken to hanging out on top of the telephone pole. This morning they were mating. Then one flew off and the other just stood up there with her wings straight out, looking like a totem pole. It still amazed me how those ugly black blobs turn graceful and beautiful once they take flight.
      

[wyntre9]

Yeah, TT, I had a real bad week

Maybe I'll be lucky enough to get a breather.

OH,

I think vultures are gorgeous in flight or not.  In parts of Tibet they're the main officiators at funeral rites.

You're so lucky to see wild raptors up-close.  They really are spectacular.  So now you have a pair of red-tails and a pair of (turkey) vultures oh, and, evidently a couple of pairs of wild turkeys?  Or are the seven toms young bachelors on the prowl?

Keep me posted as to what else you catch a glimpse of.  
Bird stories always cheer me up.  :)

PS - ya might be right about the neupogen.  I do feel MUCH better today so maybe I need injections more often.  I haven't seen labs for almost a month, although I did complain to Lab corp and they swore they were gonna send me copies of all results from 2/16 to the present.  

In any case, I'll get those from my Dr. on Wed.

[orphanedhawk]

There are so many turkey vultures around here. You see big groups of them lazing through the sky in big slow loops. I don't know all the hawks but there's many of them, in varying sizes, kites and falcons too. While sitting on the deck a few days ago, this cool looking woodpecker showed up on the oak tree. He looked like he was part zebra, all black and white striped. I hear them knocking on the trees all the time.  There's lots of turkeys around here and pigs and deer. It drives the vineyard people crazy.
   When I drive to the store you can count the hawks along the roadside up on posts waiting for some morsel. Oh, and I got buzzed by a hummingbird the other day. I love the way those little zippy guys do that when you wear red. The swallows that usually aren't here until May are back swooping up buggies in the air.
    Enjoy your flock.

[ladybug52]

Hope your week gets better. I started to post this morning and got side-tracked. I don't seem to remember the first part of your tx being easy, just that this is now worse? Hang in there, 13 down is a big accomplishment. I know you did the best you could to have tx. start over Christmas break and disabilty leave lined up in case you needed to take off. I guess that means all the moons were in alignment for this to be you time! Good luck!
Bug

[Htownwife]

Hey Wyntre,
So glad to hear you're doing better today!! Also glad you're seeing your doc tomorrow!
You're better than 1/4 done...it'll be over before you know it!

Hang in there!! You never want to do this again if you don't have to, so remember, AT LEAST YOU'RE NOT TEACHING!! (trying hard to find the silver lining, or at least the pewter one!)

And the therapist thing...er, were you experiencing riba rage last time you were there? Just kidding!! But I'm going to start reading the New Jersey Times to see if there are any articles about music teachers and anger management skills!
Who knows, maybe a little public awareness is in order!!

[orphanedhawk]

I wonder if I'd saw a yellow bellied sapsucker what would happen?

[wyntre9]

Hawke,

I'm sure between the two of us we could come up with TONS of bleepable species.

Elaine and HT,

I swear I sometimes feel like I belong in an asylum.  These meds are so gosh awful and the mood swings are intense!  Every time they happen it feels like I'm drowning but then a day or two passes and I calm down again.  It's no use trying to tell myself that while in the middle of an episode coz I get so dang paranoid I don't believe anyone, especially myself!

I've read enough about sx to know the emotional stuff is common and I'm trying not to go on AD's coz I don't need them every day (yet) and I'd prefer not to add another med to my long list.

I read through the entire peg/copeg insert today and found the following listed under possible neuropsychiatric adverse events:
Aggresive (aggressive) behavior
psychosis
mania
bipolar disorders
depression
hallucinations

So thanks all for throwing a fellow tx'er a lifeline.  

HT - don't research Music teachers - I'm bailing out - don't know how yet but I took a burnout test and I scored 100!  It's time for a change.

[wyntre9]

How funny that your woody reference got zapped!!!!

Did ya see?

It says wood******!   *LOL*

[wyntre9]

Thanks LB.

It' s not as easy as it sounds, though.

Leave is only 'til April 15th.  Now i gotta jump through a million more hoops for extension - one way or the other, I'll be paying COBRA beginning may 1.

it just never f***ing ends, does it?

getting sick is enough to make one REALLY sick.

btw, I'm at shot 13.  What are you up to?

[ladybug52]

I do shot 16 this week and I'm so sick of the lack of follow-up from the clinic I might just quit and say the he"" with it. Then again I might just keep on going. It's a moment to moment decision with me. I know you kind od got scr****d with that disability didn't you? Do you have any vacation to take or is that all used up? I mean if your disability runs out in April. I know it really stinks, I really understand how frustrating it is! But, maybe a/d's? I want to get off them eventually, but they're a godsend during tx.
Take care,
Bug

[wyntre9]

I have taken AD's before and believe me, those were the best years of my life!  *LOL*

I'm trying not to go on them coz the depression isn't every day, it's more like twice a week.

The issues I'm facing aren't gonna go away until and unless I deal with them and the problem is that new info keeps incoming and it's conflicting confusing stuff.

I will go on medical leave April 15 and pay COBRA and continue Separate DB payments but it's a little more complicated as I want to get out of teaching all together.  The union rep told me I might be eligible for a disability retirement as I have 20 years in and that would solve the insurance issue. (normally it's 25 years - and the state fights you tooth and nail for that - you know how it is)

while I know I can't work on TX - 150-200 screaming energetic uncivilized rude germy foul mouthed kids a day - no way) and it looks like I'll probably be extended to 72 week tx as i'm a slow responder  - i don't think my Dr. will sign off on retirement as eventually I should physically be able to do the job again,  (maybe in 1 to 2 years).

But I took a "How Stressed is your job making you" quizz the other day and I got 100!  :)

I'll write more later - gotta go see the Dr.

You're only doing 24 week, right?

have a great day, LB.