More sides (thrush!) and thinking of shortening treatment for Type 3. Advice?

[Algernon]

Week 11/24.  The sides are really getting to me:  anemia (now on procrit and anemia improved), headaches, hair loss, all the usual stuff.  And, now, upper respiratory infection (on antibiotics) and thrush (really disgusting and painful--I can barely swallow water).

Some of you seem like real experts (trihepguy, jmjm, you know the crew) and I really want your advice.  Recent research on Type 3 seems to be suggesting that durations shorter than 24 weeks may be sufficient.  I'm thinking of quitting at 16 weeks and crossing my fingers. I think it might work.  If it doesn't, my liver is in decent shape and I'll wait a few years for something better.

Stats:  Type 3a. one doc said stage 1, another said early stage 2 (same slides).  VL 16.5 mill.  Undetectable at 4 weeks (<10).  48 year old female, weight 112, in good health (or at least, I was before treatment).

Please advice this desperate woman. Thanks.

[FlGuy]

I think Goofy is another who is interested in a little hummer.  Algernon: Your personal ad doesn't sound so bad.  Someone may think that the thrush is the robin-like bird.  Otherwise, you've got the whole package.

[friole]

Yikes -  I am the queen of typos .  I didn't read my post until this morning -- that was time invested -- not in infested -- made me laugh too

Cannot believe your day yesterday.  Never ending story around here.  Sounds like you are reflective tho and I like your conclusions.  Maybe you need one of those mini hummers -- I think nygirl and fisheress are leaning that way...

[Algernon]

I'm not as bad as I thought I'd be today (can't open the fridge with my right hand, but, hell, I'll just use the left one--even chemo didn't undermine my desire/ability to eat).

Friole, what you are guys going to to with those minihammers?  I think I may want in on this.

FlGuy, I failed to include "thinning hair" in my ad.  That ought to clench it.

Hope everyone is well (and drives carefully!) today.

Deb

[NYgirl]

HOly COW when you do things you really do them!  I am so sorry (although sure hope you get a new car!)

One real problem I have on treatment is my driving STINKS I forget to signal and stuff sometimes I have to REALLY work to pay attention (that brain fog makes it so HARD0.  I know there are a couple others in here that have trouble driving too. BE CAREFUL when you get that new car!

Goofy there are always exception to the rules that is why it's a 50- 50% chance right?  :)

[can-do-man]

So hows your sx's been lately? Won't be long and it will be over for you. Best of luck to ya. You've earned it

[amommy]

Hi there!
I understand your dilemma, believe me!  Sorry about the thrush.  What have they given you for it?  If you are interested, try gentian violet (you can google some info about it)  Highly recommended to help in clearing thrush, but you will be purple in the process :)  Hope you get to feeling better soon.  I have decided as a geno 2 (who was DEFINITELY doing the short course, until I had an issue with under dosing on riba) my first goal is 16 weeks.  If I am feeling good at the point, I will re-up for another month.  Then we will take it from there.  You may need to set smaller goals like that to get through this.  Either way, best of luck and I will be thinking of you!  Nice to see you around here :)

[FlGuy]

Tough decisions. I think you said previously that you are a college prof/dept head with a couple of kids which I'm sure makes it in to the decision scheme.  School year ending soon? Sabatical a possibility? Assistance with kid care if you decide to continue? Good luck Algernon.  Mice are tough critters.

[jmjm530]

Some new meds for my prostate are causing more upper respiratory/sinus problems.

Over the past few weeks, my difficulty in determining treatment length is weighing my increasing desire to be off these drugs (So VERY tempting) versus an "objective" assessment of what is an "optimum" (yet reasonable) treatment length -- given my genotype, age, histology, etc.

It doesn't help that a couple of doctors I respect have different opinions on this. So, it's in my court now and I'm mentally taking it one day at a time. But if I had to guess, the end of tx is getting near. Thanks for asking.

-- Jim

[Dale_Ray]

Are you still feeling well and energy still up?

I've been feeling so much better for the past three weeks. My old car that I told you about that sits up on stands. I backed it out of the garage under its own power. My standard line now about working on it is that I'm digging up a stump. At 15 of 48 and counting. All test are at great levels and the nupogen has been cut from 300 to 150 because my system reacted so quickly and the nuetrophils jumped back and went high but within normal categories.

Take care and thanks for the insights through this treatment time. Dale

[FlGuy]

Thanks for asking. 3 months post-tx now and feeling great. Staying busy around the house and no longer exhausted at the end of a work day. Beginning to notice subtle changes, no longer the crankiest person in the house, more patience with kids around school, homework, projects, chores.  I had a bunch of spider nevi (spider-like blood vessels chest, neck, face that seem to be dissipating to a small degree. Back to coaching girls' softball team and expanding exercise (longer brisker walks about to give way to a running stride). Gained about 15 lbs back - which is about what I lost during tx. Playing weekly golf again. I went from zombie with HCV to zombie on tx and probably have not felt this good in a few years. 6 month pcr in a few months but knowing I was UD at tx end was a big lift and relief.  Don't know how much this was in my head or body. Insulin-required diabetes gone during tx (coincided with 12 clear pcr, I think). In normal ranges post-tx. Blood pressure meds still required but now in lower ranges when I suspended meds a while back to test a theory with the doc. 55 y/o, 3a, VL 600,000,  was 1/2, pegintron - redipen, 800 mg riba, 24 weeks, 100% med compliant,  neupogen/neulasta during tx, no procrit. Clear at 12 and 24.

[fresnoborn]

Hello everyone. I was reading the above comments and and I am wondering: What exactly is Thrush? I am mainly wondering because I have 13 weeks left of treatment and thank goodness for that cause I have had 35 long weeks of tx already but I have noticed in the past 2 weeks that my tongue is red and feels irritated. Can someone tell me what the symptoms are? I know we have no doctors here but I'm wondering if this could be the begining of thrush? Any comments would be appreciated. take care and have a healthy day

[GoofyDad]

This is certainly a difficult decision on your part. As amommy points out, one factor to consider is your Riba dosing. Assuming you've been on 800, that's a relatively high dose for your weight.

Based on your weight, it's probably also fair to assume no faty liver? That's another factor in your favor.

I looked at the study posted by Jim, but I couldn't make sense of it. It seemed to say all patients with VL >600,000 were treated for 24 weeks, then it went on to say that G3 patients with VL >800,000 didn't do so well when treated for 16 weeks. I can't reconcile that in my softish brain. Also, there is a theory that a 4 wk RVR, overrides other predictors, but this abstract didn't really break that out. In otherwords, by acheiving 4 wk RVR, you may not be in the population of 'under acheivers' identified in this study. It's hard to tell.

I would try to look at some of the other studies, then give serious consideration to risk vs reward. How difficult would a relapse be for you, vs how much better off will you be to get out at 16 weeks. The difficulty of course lies in quantifying what the extra 8 weeks buys you in terms of improved odds. That's the million dollar question.

BTW, I was in your shoes and chose the 24 weeks, but my treatment was not causing too much trouble, and I have advanced liver damage. Last shot this week.          

[can-do-man]

Hope this link helps. Geez your almost there, best of luck to you.

http://www.nlm.nih.gov/medlineplus/ency/article/000626.htm

[NYgirl]

Red and irritated is very normal. In fact I can't STAND IT either. It's why I eat so much ice cream and frozen yogurt in fact and can't eat anything spicy at all and I LOVE hot food :(

Thrush is a whole different thing completely. Your mouth gets coated and looks like you just drank milk sort of - and it hurts like somebody cut up your tongue and it's hamburger meat. You have to take this gross medicine which you swish around in your mouth and then swallow.

I think it's caused by killing off too many of one type of a good bacteria inside you (why I get it from Erythromicin).

So as long as your tongue is RED and irritated (little bumps and stuff too) you are fine.

I don't know the technical ways to describe it but you could google that easy enough.

[NYgirl]

Said ssuming you've been on 800, that's a relatively high dose for your weight.

Don't worry I now weight 117 and I am still on 1,000 a day as I have been all along (and sometimes I pop an extra one on shot night for some wierd reason).

But it is a high dose and has caused sx as you know.  So I'd think 800 is ok for her.

[NYgirl]

God I hit send before I finished - having some Riba day.

Sometimes - although it goes exactly opposite what statistics say and what we THINK having a LOW vl is HARDER in fact to cure than a very high one.  Ask me. Ask Cuteus. There have been plenty of people in here who have had really LOW vl's that have had trouble.

I had a three log drop at week 4 then stayed FLAT to 12. Don't know what 24 showed yet but...although they insist a low viral load is a good thing...for some reason it's not EVERYBODY and that is for SURE.

[friole]

I am sorry things are so rough right now.  The thrush mouth according to something I just read is attributable to neutropenia - a drop in the absolute neutrophils. The same is true of the respiratory infections.  You said you had started Procrit but what about Neupogen?  It sounds like your neutrophils are low. Neutrophils are the component of the white blood cell that fight infection.  When they get low, you are open to infection. Can you look at your last CBC and read the absolute neutrophil number (maybe shows up as #NE). Neupogen is an effective way to boost those white blood counts and the side effects are relatively low.  Just once more shot (boo)

My hemotologist said thrush mouth is a common which is a fungal infection is a common occurence on interferons and that if  I had it let her know.  She has formulated a mouthwash for that and would give me some.  This isnot the only doctor I have heard of that has made up their own mouthwashes for thrush.  Niastatin is also prescribed for thrushmouth - I don't know if it is OTC or rx.

I hope youare able to continue as your starting vl was so high.  Hopefully you will only have to do this once, and you already have so much time infested.
Kathy

[GoofyDad]

I see what you're saying, but when push comes to shove, I think one needs to look at the statistical analysis. I personally would try to focus on the larger statistical base, rather than the individual anectdotal cases.

You note that there have been people with low VL having trouble clearing. True, but there have also been high VL in the same boat.

[Algernon]

You won't believe this.  After posting my note (complete with tears) this morning, I picked up a coffee and was taking my car in for a tune-up.  I ran a red light, got blasted by two cars coming from both directions, and rode in an ambulance to the ER (reeking of the full cup of coffee that spilled all over me).

Now have sprained shoulder and MORE drugs to take.

Here's the good news.  1. I'm really hoping my car is totaled so I'll have an excuse to get a new one.  2. realizing that I could've been horribly or permanently injured in that accident--I'm feeling more like I can handle 24 weeks of treatment.

All of your comments are VERY helpful and give me some new things to follow up on. I especially appreciate you guys taking a position on the issue.

Goof, you only have one more shot.  You go. dude!
FlGuy--I'm gonna try harder to get in touch with my inner tough mouse.  Thanks

P.S. I highly recommend hardened coffee to give that thinning hair a bit of lift.

[Forseegood]

wow, just when you think you couldn't have any more fun, geeesh! I hope youre okay...good luck to you on your journey, i'll be taking notes!

[jmjm530]

The following study suggests that genotype 3's with a pre-tx viral load >800,000 IU/ml do not fare as well with 16 weeks of treatment, as they do with 24 weeks. This is a Pegasys pilot study.
http://www.natap.org/2004/AASLD/aasld_29.htm

As NYGirl states, for many of us side effects are not easy, and part of the treatment package. Upper respiratory infections seem common and the key to these types of infections -- as well as other sides -- seems to be agressive medical/pharmaceutical intervention by either your treating doctor or some other specialist.

That said, you always have to weigh the discomfort/risks of side effects against the rewards of better SVR odds. In your case, you're a stage 1 or 2, so arguably still have time to wait and re-group should the treatment not work.

Personally, I'd try and gut it out for 24 weeks. Certainly, you don't have to make any decisions right now. Hopefully, at week 16 you'll be doing better. also, at that point, you'll only have 8 weeks left which should seem a lot better than what you're looking at now.

-- Jim

[jmjm530]

My brain has also softened on the meds, but I think this exerpt from the study is most relevant to Algeron's decision. Beyond that, I find most abstract's by their nature to have an incomplete and sometimes contradictory feel, which is almost always resolved if you search out the full-text study. So not having the full-text at hand, I'll take it that their conclusion is supported by the data.

" Patients infected with HCV genotype 2 achieve excellent (early, end of treatment and) sustained viral response rates following therapy for 16 or 24 weeks. Similar response rates are observed in patients infected with genotype 3 and a pre-treatment viremia <800,000 IU/ml who achieve an early viral response at week 4. SVR rates in patients with HCV genotype 3 and a viral load >800,000 IU/ml are generally lower"

I read it as the subset of geno 3's who; (1)  achieve EVR; and (2) have pre-tx viremia >800,000 IU/ml --  do not have as high SVR rates  as geno 2's who achieve EVR with similar pre-tx viremia. My understanding is that Algernon does not therefore fit the short-course criteria for early termination at week 16, with her high pre-tx viral count as the main factor.

-- Jim

[Algernon]

All laid up with my heating pad and muscle relaxants...  I want to reiterate what NY girl says about driving.  I'd actually been having less fog (or so I thought) but we all need to be EXTRA careful when driving.  No phones, no drinking coffee while driving, etc.

Don't worry CanDo--If I get a new car, I'm going to print out the consumer reports list of the 10 safest cars.  I figure that whatever I buy better be able to take an impact (this was actually true for me even prior to treatment...)


Friole/Kathy:  GREAT TYPO.  Here's what you wrote:  "you already have so much time INFESTED".  THat made me laugh.

deb

[Algernon]

Jim, Your thinking on this seems sound to me.  Thanks for analyzing the data.  I'm really lucky I didn't get hurt even worse today. And I'm really lucky that I can stop at 24 weeks.  Gotta keep things in perspective.  

Good thing I'm not trying to write a personal ad these days:  HepC, Chemo, middle-aged with two young kids, no car, and thrush.  Otherwise, a real catch.