considering looking into shorter tx protocol

hi all,
i am doing week 15 geno 2, pegintron & 1000 riba, und <615 from week 4. i am considering the shorter tx after all, but will definite have this discussion w/dr. just putting it forth to the group. i see finacial difficulties ahead for me and feel the stress of it.

i currently have temp disability and student loans, can borrow a little more trying to finish thesis anda few classes, helps to be home good days so unpredictable. hard to write. really have to do some serious writing like last week. i know you see me post a lot thats writing, but i mean of the analytical sort, just haven't been able to do it. recent travel and thyroid stuff really put me out of whack. need two chiropractid adjustment just to put me right. i think from all the lack of sleep & travel. please say a prayer for me on this is am running out of time and need to graduate and just put this project behind me. have only to write results and discussion (have to analyze my data to do this. this is like only 10 pages or so single space that i am stressing about. i have to keep convincing myself it is doable.

anyway back to short treatment. i am worried about money really, also concerned in my situation the insurace may dry up and  need to make a career change in fact s -

1 would like to hear from geno2 who have succeeded in short treat.

2 hear from people who have made career significant career change during or near treatment end.

3 and or have stories of creative finacial or any other stories of encouragement

[jmjm530]

The short course studies for Peg Intron are 12 weeks versus 24. However, they use two criteria that you may or may not have. First, they used weight-based ribavirin, as opposed to a flat 800 mg dose. How much do you weigh and how much ribavirin do you take? And second, they used a much more sensitive test at week 4, probably down to around 10 IU/ml. How long ago did you take your 4 week viral load test? If it was recent, then I'd re-test using a very sensitive test like Heptimax from Quest Diagnostics that goes down to 5 IU/ml. Two or three people here have done the shorter course and all I believed were non-detectible.

-- Jim

[rosebud57]

thanks for responding jim. i know you presented similar data to me before. i had a 4 wk. test dec. 22, got results jan 12 or so so weeks passed before results give. they tested again 2/13, same test <615. would that blood still be good? i see a dr. on 3/14 could possibly request to see sooner (for consult & request test). good news is the increased thyroid medicaton really seems to have straightened me out, i feel like i can think more clearly (not sure how long that will last take a shot tonight this might be my little window of well being)


thought i had the financial end of this figured out life always cost more than it does on paper.

best laid plans of mice and men always go awry.

[jmjm530]

If you can, I'd order a Heptimax test now just to make sure you're actually non-detectible by sensitive testing. Also, the riba is a factor, you didn't mention your weight or how much riba you're on. Like anything else, a lot of judgement calls when treating with often on rights or wrongs. How much liver damage do you have? That's another factor to consider because if you have little or no damage, then a relapse then you still have time to wait -- conversly if you have significant liver damage, you have less time to wait for better treatments.

[nobhillhepc]

Hi, I was in similar situation, in the sense I had to stop treatment early due to side effects, I am (was?) genotype 3, but it is more or less the same, although genotype 2 does have slightly better rates of clearance, whether you stop early or finish the 24 weeks.  My memory of the criteria for stopping treatment at 12-16 weeks is:  Genotype 2 or 3, low baseline (at beginning of treatment) viral load (under 400,000), and you need to be undetectable at week 4.  If you meet the criteria then you should be okay to stop, but of course using the more sensitive tests that jmjm30 mentions, obviously I am not a doctor, but its worth presenting to your physician.  Not sure if your doctor is up latest research, but it seems that is where it is going for rapid responders to treatment who are Genos 2 & 3.  I do have to admit stopping early has made the wait to see if I remain clear a little more worrisome/stressful, I personally wish I could have finished the six months.  (Guess I am feeling better after treatment, able to worry and be neurotic again!)

[rosebud57]

believe weight based i began tx at 156 yikes i was feeling puffy at 5'4", anyway lost 12 or so pounds my weight seems to fluctuate 2-3 lbs in a single day can't figure it out. hardly eat, must be the water.  heak of a way to lose weight.

so riba 1000 mg @156 lbs.

[nygirl7]

they tested again 2/13, same test <615.


615 is a very old very archaic test and I would NOT go by that to be an UND at ALL.

At week 4 I had 411 as my number. According to the 615 test - I would have been UND but as you can see...I was not at all. At week 12 I had a number of 419. Still with the old test I would have LOOKED UND while I really was not at all.

Knowing this - it gave me the basis to do the 72 weeks instead of regular 48.

If I didn't have a more sensitive test - I would have thought I was UND from week 4 instead of finally getting a real UND at week 24.


I would so totally NOT base anything on that test - it would be so easy for it to be wrong.  You really need to have a much more sensitive test (a TMA goes to <5) before you make any big decisions at all.

You really don't know that you were UND or not at this point.

What a pain why wouldn't he give you a better test than that????????????????????????????????????????????

THAT makes me so mad I can't stand it.

[rosebud57]

hi thanks for responding, how many weeks were you supposed to go and how far did you actually get?

i don't have paper record of first viral load. i know liver was supposedly normal from ultrasound, don't know what else they ran, hear people here talk about fibro something tests don't know if that is blood or biopsy related.

i was told viral load was 36 want to say million? they write that in log form when i looked at RN notes i think she she wrote 36.5 something like that. i remember just feeling extrarelieved when looking over her shoulder i was HIV- wouldn't need that extra thing on my plate.

[rosebud57]

i am going to call leave message for dr. to phone me right now. this immediate concern is all based on the financial.

i feel a financial struggle i will be unable to deal with looming just 2 months ahead it that. at least i don't really own anything yet. trying to hang on to the delicate balance.

[motheroffour]

This less than 615 thing makes me just crazy, too, I'm still "arguing" in a friendly way with my H's doc about it.  She feels UND is UND and less than 615 is a fine test, standard practice and why am I so fixated.  I tell her "I'm fixated because you all told my husband less than a year ago that he has probable cirrohsis so yeah I'm fixated!". My H just smiles (totally supports my position and trusts me). H was at 41,000 week 4 and around 2400 week 8 and "UND" by the under 615 standard at week 12.  I just shipped my H to our local Quest Lab last month and today he went for his 24/48 viral load and I wrote Heptimax on his lab sheet.  The doc is now crying at me because I switched labs (so she can't really compare his ALT/ASG levels).  I just blew her off because my H's ALT/ASG levels went into the normal range 3 months ago so I used her line back at her and said "normal is normal" what difference does it make if one says 17 and one says 26 they are both "normal".  I really can't wait to see today's PCR results come in and I really hope he's UND and not at 400 or something because that will really get me going.

[rosebud57]

hard to keep up with everyones names (can hardly read the print).
thanks for responding. i am curious to hear the results of the more sensitive test. please post to me here so i don't miss it.

i just left message for RN to call me, this will not be my RN as she has gone on medical leave, so this will be my first contact. my next bloodwork is 3/7 but don't know if they will be testing pcr as they just did so 2/13,

jim or any knowledgeable,

is the blood from 2/13 still good for more sensitive test? do you think they will still have the sample?

if not and i am not scheduled for pcr how hard would it be to get one out of sequence (know this is subjective),

what about paying for one with a written order anyone know the cost?

[nobhillhepc]

Hi, I was set to go for 24 weeks, and stopped at week 15 due to side effects, white blood cells, fever and severe interferon induced psoriasis.  My doctor contacted another doctor who is really into Hep C research at a university hospital, they both agreed due to the fact (a) I was geno 3, (b) low baseline viral load of 200,000 and (c) cleared virus sometime during the first 2 weeks of treatment (I was already clear at week 2, so I could have cleared anywhere I guess between day 2 or day 14?) that I could stop treatment, if the psoriasis was not an issue I probably would have completed the additional time, but they both felt in my case my odds were about the same whether I continued or stopped early and with all the side effects it was in my best interest to stop early.  The "fibro" test you mention might be the fibrosure test, its a blood test that is used a lot of the time instead of a liver biopsy to determine extent of liver damage.  

As far as your baseline viral load, perhaps might be a good idea to contact doctors assistant and get the exact number, you did have a rapid response (but do insist on a more reliable/sensitive viral load test).  Maybe somebody else on Forum can clarify this, but it does seem to be necessary to have low baseline viral load to do the shorter 16 week course for genos 2 & 3, if yours was any number in the millions I do not think it is advisable to stop early if at all possible, seems to me 400,000 was the number used in the studies I have read, although it could be just the rapid clearance is sufficient.  I am sure somebody here can clarify this, or correct anything I may have mistated.  

Marcus

[Cindy10]

I am gt3 so my tx should be 24 weeks.

I too was <615 at week 4 but then they did the qualitative and I was Detected, so this test not sensitive enough. So my viral load was somewhere between 10-615.  

As a result I have to not only go the full 24 weeks I have to extend. And I was UND at 12 week.

Also my husband was <615 for two years prior to treating and he had the virus all along and viral load eventually went up to 60,000.


Make sure you get a better test.

[rosebud57]

still looking to hear if anyone opinions blood from 2/13 might be available for re-test or even if available would be fresh enough isn't freshness and how they handle it an issue?

could i have this blood sent to a lab if they won't do the test for me and pay for a more sensitive test?

anyone know the cost of a more sensitive test?

I have enough meds to go to 18 weeks. i think my insurance is okay but it has an uncertain future (not really tied to the job i am on leave from.

really need to go back to work.  i actually feel somewhat normal today my little window of opportunity. i am so jazzed i actually just wrote one page of the 10 i need to write it wasn't the hard stuff but i feel i can more actively engage myself in the process. what is scarey is an hour from now this newfound energy could be gone.

[jmjm530]

You can try to have your doctor add the more sensitive test to the older blood draw. If the blood is still being stored, viable and they have enough, that would be ideal. Worth a try.

-- Jim

[nobhillhepc]

My thoughts, have to be quick here, I am at work, (1) insist on getting the better tests, like Quest Diagnostics, see jmjm530's recommendation and (2) get EXACT viral load at beginning of treatment, right before starting treatment.  

[BThompson4]

<615 test is no good for making such an important decision.  Would have shown me clear at week 12 when I did not clear until week 22-- huge difference.

My viral load, week 12 to 22.
561 (12)
447 (15)
174 (18)
72 (20)
und<25 (22)

[traveler65]

Got my 4 week PCR results today. <50. Asked why a more sensitive test was not run and doc sayed it was not necessary. Doc says I am RVR. I am a geno 2 and the doc said if sides get bad he feels that even 12 weeks would be good enough for SVR. I told him that if at all possible I am going for the full 24 as I don't want to ever have to do this again.

[rosebud57]

i hear you there. while its probably not the worst thing that could ever happen, i would never wish this on anyone, nor would i want to go through this again.

trying to figure how i can keep going or stop and be done with it forever.

still no call back from RN, you all have offered good advice always open to hear experiences of others.

[rosebud57]

regarding above question (recent post)
just wanted to know what  questions i should ask and postion i should take when speaking to the RN who returns my call.

[scubadiver30]

I'm also 2b on week 15. My initial VL was 2,5 million.
I was UND at week 2 with the <615 test RVR? guess not
UND at week 4 with <50 RVR this week, yes
UND at week 9 with <15
UND at week 12 with <15
I feel crappy, & I'm afraid of loosing my job and my thyroid is kinda sputtering. MY sx have been severe lately.
I have 2 docs (one says I could get by with 16. He's a good hepatologist and he travels to all the AALD conferences. He's pretty up to date) The other one (a Hep doc that's always seeing coinfected and hard to treat patients) wants me to do the full 24. His experience is mainly with gt 1's.
I have enough meds for 20 weeks... I'm about to go crazy with this dilemma, but I feel weakening more and more as days go by.
Maybe with the shorter course I could have relieved some of the pressure on my liver and if I relapse, maybe could wait for better milder meds.
On week 16 I'll see what I'll do
good luck to yous

[rosebud57]

its nice to meet someone who is in the same week as i. great to see the tx is working for you seem like good numbers. sorry you are having such a hard time with thyroid, sx and work. you'll get through this time soon it will behind both of us.

i just took my 15th earlier this evening. should be asleep but i guess i am getting hooked on the forum. i have been having more energy since they upped my thyroid meds, kids (adults really) noticed that i 'got a lot done today" ha. well it was a beautiful day today (yesterday) so that helped a lot too. you might double check those numbers i am really feeling a lot better, more energy though not enough for a 'full' day. and sleep better a night.

h0pe we can stay in touch since we are same start weeks, did you start week of thanksgiving?

hey i have been asking this question all over the place when a person is geno 1, or 2 or whatever, what is the letter a or b signify?? no one ever can answer that one to me.

sorry about difficult time at work, what kind of job do you have? is it physically or mor mentally demanding?

[rosebud57]

re: dr. says i am RVR.

what does RVR mean?

[Bill1954]

RVR = Rapid Viral Response = good stuff! It is usually defined as RNA undetectable or in some cases exceeding a 2-log drop in the first 4 weeks of Tx. This is an excellent positive prognostic indicator for SVR. An early, albeit guarded congratulations to you!

Bill

[Bill1954]

Rosebud-- I found this and posted it in response to your question regarding the "letters" that are listed after the genotype; Re: genotype 1a, 1b, 2a, 2c, etc. They represent "subtypes" that further define the individual strain of virus you carry. I hope it helps a little. For further reading, here is the page I cut it from--

http://janis7hepc.com/Genotypes.htm#what%20is%20a

"...What is a Genotype? (How many different types are there?)
Our special thanks to Sharon Nicholson
Most of us learn about Hepatitis C as one disease, however in actuality it's really several different strains of a virus. They are all similar enough to be called hepatitis C virus, yet different enough to be classified into subgroups.
HCV GENOTYPES are broken down into sub-types, some of which include: 1a, 1b, 1c 2a, 2b, 2c 3a, 3b 4a, 4b, 4c, 4d, 4e 5a 6a 7a, 7b 8a, 8b 9a 10a 11a
Genotype Geography Patterns:
It is believed that the hepatitis C virus has evolved over a period of several thousand years. This would explain the current general global patterns of genotypes and subtypes:
1a - mostly found in North & South America; also common in Australia
1b - mostly found in Europe and Asia.
2a - is the most common genotype 2 in Japan and China.
2b - is the most common genotype 2 in the US and Northern Europe.
2c - the most common genotype 2 in Western and Southern Europe.
3a - highly prevalent here in Australia (40% of cases) and South Asia.
4a - highly prevalent in Egypt
4c - highly prevalent in Central Africa
5a - highly prevalent only in South Africa
6a - restricted to Hong Kong, Macau and Vietnam
7a and 7b - common in Thailand
8a, 8b & 9a - prevalent in Vietnam
10a & 11a - found in Indonesia

One way to understand the terminology of HCV like

[scubadiver30]

How about that explanation of subtypes? :-) Good work Bill
Rose, you're probably a or b (being geno 2 "the easiest" to treat). I don't know why didn't they tell you in the lab.
Yes, I started TX in thanksgiving and my first 8 weeks were great. Little sx.
But since week 10, I'm struggling. I do hope the endocrinologist is gonna give me something so I feel better. If she does, I might be able to finish the 24 course. Prey to God on that one.

Saludos
scuba

[ladybug52]

Sent you an e-mail, thanks to Auita. Hope you got it. Take care
Bug

[rosebud57]

bill,
thank you so much for the alphabet explanation. that was so baffleing, & RVR. that one also had me stumped.
your research is so thorough. i just don't have time to do that kind of looking. barely can focus on school stuff.

scuba.
thank you for sharing. i don't know if there are others out there at week 15. but i hope that tx gets easier for you. you are going to see an endo? problems with thyroid or something?

i really know very little about this disease/illnesss that we all share, just the basics really. the more detailed and medical research and stuff like nil.

i am sad to here of those whose fate is far worse, like severe liver damage, or resistant to tx. hard to fathom having to deal with this for years on end, sometimes with no positive results.  i am continually thankful for the support that all of you offer daily.