Got the results today from biopsy

Called dr office they wanted me to wait till July 19. I said no way i need to know now. So he called me back . said i have minimal to moderate swelling and minimal to moderate scarring   He said i was stage 2 i really didnt know what that meant . so he said on a scale of 1 to 10 i was about a 2.5 1 being good 10 being bad now he wants to do a geno test and discuss treatment options.any one have sugestions or comments please post. I feel a lot better now, mentally i was a wreck

[sfbaygirl]

Sorry to hijack the thread, but I am a bit upset at my rescue drug status.  I got my labs this morning, didn't look at them until lunch time and found out my Neuts are .6 and my Hemoglobin in below 10.8.  I am angry!

Why don't they just give me a prescription?  At least for the neupogen. I am supposed to check my own labs and call them if low, so I kind of spaced it out because I have been busy moving for carpet layers. What a job! I have been dizzy and weak the past couple of days, couldn't drive, but don't feel too bad. That is why I didn't think anything of checking the labs!

It's Friday afternoon, and I have to hope the Dr. will get me in to give me the shots today. Geez, this is unbelievable! I guess it is my fault as I should have done the labs Wed. and had the results yesterday. Yuck!

How is everyone else? I miss you guys, hopefully will be online more in the coming week.

Linda

[NYgirl]

SFBchick

This is the disease of waiting until you are almost in a coffin to bother giving any prescriptions it seems to me.  I didn't get Epogen until I was at 9 and I lived - it wasn't easy but I did it. I am a WUSS and if I could make it...you can too!

I know that really doesn't help any...but just know that lots of us understand what it is like. You are dropping SLOWLY and that is why the doc probably is making you wait...it also matters how fast you drop (for example I went six points in just over a week).  Who the H*LL knows WHy they make us wait.

PS I CHECK MY OWN LABS BUT MY DOCTOR ALWAYS ALWAYS ALWAYS CHECKS THEM TOO! i am NOT a doctor and NOT responsible for my treatment - he is!

If he does not KEEP you on the meds you will drop straight back down again. A shot once in a while is NOT going to do it and you know it.




REDZ
Regarding the bx think of it this way - out of a scale of a possible 4 you are at 2.  Doesn't that reflect to you that it's HALFWAY? That is the way that I looked at it but it didn't make sennse until I saw a diagram of a Zero and a Four liver. Boy it zonked me in to place at that point.

There is NO way out of a scale of 10 you would be a 2.5 that dosn't even make sense did I read that right? It's a scale of 4, then you move to cirhhosis.

No debating.  At 2 you should really seriously begin to think about doing treatment...while you are halfway and not 3/4, right?

[Kalio1]

Seriously? They told you to check your OWN labs?? wow!
Do they know you are married ot a lawyer?? lol
Im sorry but you should not be the one checking your labs! Sure, you can for your own knowledge but someone should be watching them closely... the doctor!
I have had a terrrible time trying to get any rescue drugs, I hear you on that one. My hgb has hovered at 10.5-11.0 the whole tx and I bet rescue drugs would have really helped my QOL.
Poor you, sounds like you feel lousy, I sure hope it wases up soon.

[jmjm530]

Re-reading the posts, I was a little quick to recommend a change in doctors based solely on what was presented but it was a feeling I had and apparently born out by redz's later characterization of doctor 1 being a quack. Tried to qualify things somewhat in my follow-up posts, but to do it all over again I would have written it differently. I do understand that many good doctors biopsy in spite of genotype. Rev, genotyping aside, you said viral load can come after biopsy, then how is someone to know they actually have hep c, as a positive antibody test is non-conclusive. Are you then suggesting a qualitative viral load test instead of a quantiative?

-- Jim

[can-do-man]

Not sure, but could he be going by the Knodell score on the bx?

[jmjm530]

Sorry you're having a rough day.

Not sure about your hemoglobin situation, but absolutes neuts of 600 don't necessarily require Neupogen. The orignal guideline was below 750 but many doctors use 500 and a number like mine (I also believe Goofy's) generally don't use Neupogen until abs neuts hits around 300, except in special cases. FWIW, my abs neuts were 340 one week and over 1000 a couple of weeks later. In other words they bounced around a lot.

-- Jim

[sfbaygirl]

Yes, I think I will sick my lawyer hubby on them! That will do the trick. He hates my doc anyways.

The hemoglobin drop I had before from 16 to 11 was devastating. But I don't feel so bad this time, probably because the drop was only a few points.

But the .6 abs neuts is NO GOOD! I am supposed to go to a Radio Head concert tonight and be around all those germs. Perhaps I need a bubble! Maybe I should borrow someone's bee suit.

One week to the next I am up and down and all over the place in my labs. I am out of breathe but I not as wiped out as the first time. I just don't want to be on this stupid roller coaster. It's bad enough with just the combo tx.

They shouldn't play with our bodies like we are rats. Not everyone is the same and I know cancer patients get procrit easilly. My mother gets it, but can't afford it.

We need some damn respect!

[sfbaygirl]

That makes me feel a bit better. I hated that neulasta shot anyway, but I would hate to catch something.

The good news is I don't feel to bad. I was wondering why I was dizzy (although I'm a dizzy blonde anyway) and out of breath and weak a bit, but I suppose I am getting used to feeling like ****.

You sure sound better! I read some posts below, and you sound like you're having fun!

[can-do-man]

Most insurance companies won't cover procrit for your hgb till it goe's below 10. Why i don't know.

[jmjm530]

Don't mean to be flip, but if he did a biopsy before testing your genotype I'd consider finding another doctor, preferably a liver specialist (hepatologist). Did he do a viral load test? On what basis was the biopsy done? Hopefully, not solely on an antibody test. In any event, it could have been a lot worse than stage 2, so you can relax in the meanwhile.

-- Jim

[jmjm530]

Didn't mean to insinuate that your biopsy wasn't a good idea, but the usual order is antibody test with confirming PCR Viral Load test if Antibody positive, followed by genotype test, and then followed by biopsy if that is what doctor and patient want.

[redz11]

viral load was 400000 why genotype was not done i have no idea i had switched  docs due to insurance reasons i live in aberdeen md supposebly he is supposed to be good he only works with hep problems I found him threw research Last hep doc was a quack but i will definetly get a 2 oppinion

[jmjm530]

OK. Well that tells us that you definitely have Hep C, and one school of thought is that everyone with Hep C should have a biopsy. Still, not knowing your genotype beforehand made me wonder how experienced your doctor was, but you do mention two doctors were involved and one was a quack. BTW, my personal belief is that everyone should get a least two opinions before making a treatment decision, unless they have supreme confidence in their liver specialsit. Congratulations again on your biopsy result, I'm sure you'll sleep better tonight.

-- Jim

[Kalio1]

Not necessariy, the doctor might have based his decision to go ahead with the biopsy on other factors. Many people have biopsies of the liver who do not have Hep C. We don't know why he elected to do it that way and it is NOT fair to tel her she needs to find a new doctor because he chose to do the biopsy prior to genotyping. Why harm her confidence in her doctor when most everyone advises GET A BIOPSY constantly? Genotyping isn't even a fatcor necessarily in doing a biopsy. We need to be careful in making judgements of doctors decisionmaking in light of the fact that none of us are doctors, number one, and in light of the fact you don't have all the facts so you have no idea what his reasoning was. I for one think it is great the doctor did her biopsy when so many refuse to do them based on genotyping which should not be the deciding factor as to the necessity of a biopsy.

[jmjm530]

Well, I have you beat. I had my first biopsy around 1969 and didn't have my genotype test until over 30 years later :) Of course, hep c hadn't been "discovered" in 69, not to mention genotypes. Sorry again about your treatment result, but hopefully you'll start feeling better soon as the treatment drugs start to wear off.

-- Jim

[Moniker]

Jim,
  I have great respect for your advice and knowledge. But you do need to be a little careful about telling people to get a new doctor. It can be upsetting to be told to find another doctor if you can't afford another doctor, and if you've been feeling confident with the treatment you've already been getting.

I have confidence in my doctors at the West Haven VA Hospital in Ct. Some people seem to think that VA doctors must be second rate just because they are at the VA. The VA treats a lot of hep c and has a lot of experience with it. Dr. Garcia is one of the heptoligists at my VA hospital. Here is a little info about Dr. Garcia from a web site:

Dr. Guadalupe Garcia-Tsao, MD is Professor of Internal Medicine at Yale University School of Medicine and Staff Physician at the Connecticut Veterans Affairs Healthcare System where she is Program Director of the Hepatitis C Resource Center, one of four such centers nationwide. She is also director of the Clinical Core of the NIH-funded Liver Center at Yale.

  There were a few times when people on this web forum advised me to get a new doctor. They said that I needed a heptoligist at a clinic that had more experience with hep c than the VA hospital. It was confusing advice for me because I couldn't afford another doctor and because I had been confident with the treatment at the VA.
Bob

[52TELE]

JIM? What in the Hell kind of doctor are you anyway?
Your not?
Your just a guy giving his opinion because someone asked for it?

Well , watch it next time. You might get brought up to the
"guy giving opinion" board and loose your license to give opinions and then where would you be? Thats right , just another poor schmuck with hep c like the rest of us.

I always appriciate your opinions Jim , right or wrong and I always base my serious health related decisions on whatever you say .


LOL

[Forseegood]

Good point 52, or Tele (like to give nicknames but could go either way with you I guess)...this is just a patient-to-patient Hep C board with all of us giving support and opinions to bolster a Hep c patients knowledge base, or not...

It would be impossible and improbable if we all agreed on everything everyone said here...Hopefully everyone checks off all the pertinent knowledge they have obtained here with their respective professional caregivers...

And hopefully we all take it as such as well .... guess it's prolly a good idea to keep reminding newcomers of this as well...

[can-do-man]

LOL, we might have to run a few feet and set down 5 minutes then go another 5 feet. Might be dark before we get to the back yard. That would really make the neighbors think.

[Kalio1]

I think around here "see the best heptologist you can find" is a common suggestion to most, basically because they are specialists of the liver but that just isnt possible for many, many areas do not even have one in town.

The VA gets a bad rap because it varies so much from facility to facility. Some are top notch others not so much so. Also the VA ( before their big revamp) used to be notorious for lousy care sort of across the board many years ago and I think there is some holdover from then in people's minds even though many VA hospitals are cutting edge now.
My opinion is no one should take anything they read on the internet posted by a patient OR an internet doctor without researching it ON THEIR OWN. No one should take anything said too seriously either and consider the source...random strangers!
That isn't to say you can't find very valuabe info only that one has to investigate independantly for their own well being.I hate it when I read someone is stressing out over something they read here that has sent them into a panic when they haven't even verified it's validity on their own!
I am very glad to hear you are getting good, competant care from the VA. I have anger towards our govt. for the shoddy treatment of our Vets when they get home. I think VA hospitals should be the BEST care possible in the US because they are the ones that laid their lives on the line for all of us and they deserve the best care known to man and anything less is a shame on our govt.
I hope you are doing well, take care.

[Pdilly]

Hope you two get to feeling better real quick.  Gosh you two have me even wondering if I can make it once I start the tx. I know it is different strokes for different folks but it sounds like no matter what it is not a picnic.

[jmjm530]

I have no quibble with your statements and have already said I would have worded my initial post differently. It's always upsetting to hear that someone disagrees with your doctor or treatment, but that's one reason why many people come to discussion groups -- to get opinions other than what their medical team tells them. Groups like this are a great source of information, but like any source (doctors included) what's said here should be checked and double-checked with other sources, including your own doctor.

-- Jim

[sfbaygirl]

Pdilly; Tx is no picnic, but I really have started to feel better in the past week than during the first 8 weeks. I know I whine a lot, but sometimes it is absolutely necessary to keep up with this tx. A lot of people here have few or no sx and/or they get better with time. So far, even though my numbers have dropped again, it isn't as tramatic as it was the first time. You will do fine! I know it's scary before starting.

Jim, Moniker; I was complaining about my doc's care. I am waiting until week 12 to see how the PCR is going. I am having to be my own best doctor, along with all the "opinions" here, but I really appriecate all the advise I get from you and everyone else.

I called the Hemo dr. back and am getting shot(s) tomorrow for my hemoglobin hopefully (he did it at 11 before) and the abs neuts. Kinda nice he is in on Saturday!

My GI I will wait to hear from. Even though the labs say dr. will contact you, I will not hold my breath. Last time he wanted me to stop or cut down the Riba. I will just tell him NO and tell him I will keep him posted if they don't go up.

[can-do-man]

the Knodell score on the bx is widely used and has a whole set of different numbers they use to come up with stage

[can-do-man]

The low hgb hasn't made me feel bad, just caused me to be short of breath, just walking a short different. So far i have been lucky and i only hope this is the bad. Was you able to get your bx. score yet?

[jmjm530]

Didn't realize you're on Neulesta. Is that like Neupogen?  Don't have a clue what the guidelines are once you start taking helper drugs for your neuts. The only helper drug I took was Procrit. Maybe others here will offer some guidance but definitely get a call into your doc or NP before the weekend to discuss.

Are you on Procrit as well? Sounds like your hemoglobin's had a big drop. I was probably being overly-cautious but I rarely went to a movie/concert etc during tx because of my neuts. Another question for your doctor.

-- Jim

[Forseegood]

Speaking of having fun, have you ever tried Natto? Been meaning to order it but it looks weird for even the likes of moi...

[jmjm530]

Not sure if I'm having "fun" as opposed to too much coffee today.  

No, I  never tried "Natto" but I hear in case of  nuclear attack it comes in handy. What is it?

-- Jim

[sfbaygirl]

I had Neulasta several weeks ago instead of Neupogen. My hemo says he likes it better. I slept 16 hours a night for a week!  Supposed to last 10 days. Flguy has had it before.

The hemoglobin went down and the hemo gave me Aranesp, which is the same as procrit except is peglated and lasts 2 weeks.

I have to go in to see him when I NEED the shots. He doesn't just simply give me a script for them. I haven't heard anyone here having to do that. Not that I mind not taking more drugs, but if I need them why do I have to wait?

Is this just an oncologists thing? Who knows?

[jmjm530]

Well, I'm hesitant to recommend anyone switching doctors in this thread LOL but if you're having communication problems and you don't like him and your husband hates him, I suppose shopping around is always an option. Right now I'm on "hold" with a dermatologist I can't stand, so I'm currently shopping around. But until you're actually switched, it's important to try and get as much out of the current doctor as possible. Not sure why they don't give you a script either. Hope you feel better soon.

-- Jim

[susan400]

Jim,

Way back in the early days of my diagnosis, my doctor did the liver biopsy first.  I didn't get my genetyping until 2-3 years later by a different doctor.  I don't know in the whole scheme of things (especially in my case), that it really makes a whole lot of difference what order you do it in.

Susan

[OnAPrettyPoison]

Hey there Can Man!  I am glad you aren't feeling bad - I haven't really felt bad either, and this may be the worse you get.  My hemoglobin hasn't been over 10.7 even doing procrit once a week, and I have had a few bouts of low neuts making it hard to fight off minor infections, some heavy shedding of hair that the right shampoo resolved, but that is about it.  I have done some championship sleeping on the weekend every now and then!  NP said no more playing out in the yard with low hemoglobins - it has been in the high 90's here!  Good excuse not to cut grass!

Pdilly, treatment isn't a picnic under any circumstances, but it is a good excuse to be a couch potato on the weekends.  You have to look at the bright side of everything!

[can-do-man]

Only a few left for you. And do as your NP says, stay out of the heat And NO MOWING. If i cruise by there and catch you mowing after i catch my breath i'll give you a swiff kick in the butt.:) Take care gal

[OnAPrettyPoison]

Just did the big fat 45!  Wonder if I'll get kicked out of the neighborhood for sporting the weedy look?  NP was actually shocked I had been doing it on treatment...and if you see me mowing, you'll have to chase me, and I might outrun you right now!  That procrit will start working in a few weeks, I think the body kind of gets use to the low hemoglobin after awhile.  Well, you start not noticing it as bad, anyway.  Feel better!

[lilmoma]

I gotta "ditto" on what ny said,...............I dont know of any scale that goes to 10
Everything I have read or heard from my doc is a scale of 0-4 and the if you have cirrosis (cirrhosis), that is also broken down to 4 degrees.
So a 2 on your stage is half of 4
what is your grade? Grade rates the amount of inflammation.

[lilmoma]

Hey, thanks for the heads up.
Im going to have to read a little more. :)

[GoofyDad]

sfbay: I thought you wre switching Docs?

Pretty: I do love a woman at the business end of a lawn mower!

[sfbaygirl]

Yes, I am going to switch Dr's. I want to get through the first 12 weeks w/o disruption. Plus, I need to find out if my ins. will pay for the new dr. 2 more weeks to PCR. Besides procrastination and being unmotivated it's been a Crazy couple of weeks with 10+ people working in my house, all asking this and that. Whew, I am lucky I caught the blood test!

I went to Hemo dr. and got Nuelasta and Aranesp again this morning. Do you guys do Procrit and Neupogen at the same time?  I told him I am going to Jamacia and want to make sure I have these shots before I go. They supposedly last two weeks, so I should be fine if I get them right before I leave.

[redz11]

I did not understand grades when i was talking to him i said to him on a scale of 1 to 10  1 beng good 10 being bad were am i at?? He said in that aspect you are about a 2.5 Sorry probally the way i wrote it.. im not to intelligent as you can tell by my typing i dont even no were to put periods and commas so i get docs to explain it to me my wat so i can understand Thanks for every ones input this sight has been verry helpful  I am a 40 year old male never used drugs iv but did snort a lot..  and popped around a 100 percoset a month for almost 10 years . And drank 2 cases of beer and a fith of grandad every weekend . Wich i have quit everything now Dr said a lot of it could have been from partying and hep c made it worse Thanks to all  oops forgot i had a blood transfusion in 82 odds are pretty good thats were i got this hitchiker from I just pray i can ditch him