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4 weeks VL, NOT RVR
by Marcia2202, Sep 23, 2008 05:20AM
what a bummer..... my 4 week VL came back saying....
Hepatitis C (HCV) PCR: POSITIVE HCV PCR: detectable, less than 80 IU/ml, not quantifiable
My hepa was happy that it had gone down from 1.3 million to that... Needless to say, that I wasn't too thrilled, as I was going for UND.
They don't usually prolong tx, but my hepa is open to it, due to the fact that I am geno 3a and partially Black American and that I'm informed and pushing. We had a great discussion and she will do another PCR at 8 weeks. I have stressed that if UND at 8 weeks I would rather add 8 weeks to treatment, than to risk relapse and do this whole thing again.
(I was referring to Dr. D's advice to add 24 weeks of tx after EVR.)
Now she is going to try and find studies supporting the fact to extend, if not RVR and I will supply her with what I have.
So what I would suggest is to go for 32 weeks of tx, if I EVR at 8 weeks. ( 8 + 24)
If anyone has any studies supporting this, could you please let me know... as the more literature I have on this, the better I can argue my point.
Thanks,
Marcia
Hepatitis C (HCV) PCR: POSITIVE HCV PCR: detectable, less than 80 IU/ml, not quantifiable
My hepa was happy that it had gone down from 1.3 million to that... Needless to say, that I wasn't too thrilled, as I was going for UND.
They don't usually prolong tx, but my hepa is open to it, due to the fact that I am geno 3a and partially Black American and that I'm informed and pushing. We had a great discussion and she will do another PCR at 8 weeks. I have stressed that if UND at 8 weeks I would rather add 8 weeks to treatment, than to risk relapse and do this whole thing again.
(I was referring to Dr. D's advice to add 24 weeks of tx after EVR.)
Now she is going to try and find studies supporting the fact to extend, if not RVR and I will supply her with what I have.
So what I would suggest is to go for 32 weeks of tx, if I EVR at 8 weeks. ( 8 + 24)
If anyone has any studies supporting this, could you please let me know... as the more literature I have on this, the better I can argue my point.
Thanks,
Marcia
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Hope you are doing okay with the sides.
Trish
k
If I remember, your genotype is 2 or 3? Are you on weight-based ribavirin or flat dose? (how much do you weigh/height and how much riba are you taking? Do you have fatty liver? Insulin resistance? What was your pre-tx hemoglobin and what was it at various points during treatment? How have your side effects been so far? How much liver damage do you have?
------------------
Study supporting extending tx to 48 weeks and weight based riba for geno 2 and 3 who do not ahieve RVR
http://www.natap.org/2007/EASL/EASL_33.htm
http://www.natap.org/2007/DDW/DDW_11.htm
Importance of Ribavirin concentration (Shorter Course Studies)
http://www.hivandhepatitis.com/2008icr/easl/docs/050608_a.html
---------
The other thing is that you're part Black-American, often listed as a negative predictor although recently I've read some studies (can't find them) modifying this a bit.
Sounds like you probably will want to extend. For how long might depend on your viral response (ideally you would be tested weekly from now on, but at least at weeks 8 and 12); how much fibrosis you have; and to some extent whether geno 2 and 3. Also factoring in might be if you've been properly or underdosed with riba so far.
This would be a good question to ask Dr. Dieterich.
-- Jim
I think your VL report is somewhat strange. 80 IU is a weird number not to be able to quantify below. What was the tests name?
I would be surprised if you find any studies supporting 32 weeks improves svr.
The only study I am aware of that recommends anything close to this is the Drusano model.
And that suggests 30-34 weeks after UND. You should be considering 48 weeks.
There isn’t much to go on really. Below is a summary
A 48-Week Duration of Therapy with Pegylated Interferon a2b plus Ribavirin May Be Too Short to Maximize Long-Term Response among Patients Infected with Genotype-1 Hepatitis C Virus
G. L. Drusano
The Journal of Infectious Diseases 2004; 189:964–70
If the hypothesis is that longer durations of therapy will result in a higher probability of a sustained viral response, this will have the greatest effect on patients infected with genotype-1 strains.We would still expect to see an improvement in patients
infected with late-responding non–genotype 1 strains.
For patients infected with HCV non–genotype 1, the 80% and 90% probabilities of a long-term antiviral response would require that virus loads be undetectable for 30 and 34 continuous weeks, respectively.
Increased SVR Rate with 48 Wks' Treatment and Higher RBV Dose in HCV Genotype 2/3 Pts Without a Rapid Virologic Response (RVR) Treated with Peginterferon Alfa-2a (40KD) (PEGASYS) Plus RBV (COPEGUS)
http://www.natap.org/2007/DDW/DDW_01.htm
Peginterferon alfa-2b plus ribavirin for treatment of chronic hepatitis C in previously untreated patients infected with HCV genotypes 2 or 3.
Journal of Hepatology 40 (2004) 993–999
Stefan Zeuzem
HCV-RNA was undetectable in serum after 4 weeks of therapy in 33 of 42 HCV-2 and 137 of 182 HCV-3 infected patients. This initial viral response was independent from baseline HCV-RNA levels in HCV-2 infected patients. The week 4 virologic response in HCV-3 infected patients, however, was higher for patients with a low baseline HCVRNA level (90 vs. 79% for patients with baseline HCVRNA #600,000 and .600,000 IU/ml, respectively).
The present study confirmed that an early virologic response predicts SVR [13,15]. The SVR rate in HCV-2 and HCV-3 infected patients who had undectable serum HCVRNA already after 4 weeks of combination therapy was 94% (31 of 33 patients) and 85% (117 of 137 patients), respectively.
Thirty-five additional HCV-3 infected patients cleared HCV-RNA from serum by treatment week 12. The SVR rate in these 35 patients according to baseline HCVRNA (600,000 IU/ml) was 85% (11/13) and 59% (13/22), respectively.
In the present study, the SVR rate was higher in patients infected with HCV-2 than in those infected with HCV-3, suggesting that virologic response rates should be presented according to single genotypes rather than to any arbitrary combination of genotypes. Within the group of chronically HCV-3 infected patients, a higher virologic relapse rate was observed in patients with a baseline HCV-RNA concentration of more than 600,000 IU/ml.
Additional prospective studies are required to address the question whether patients infected with HCV-3 and a high baseline viremia should be treated for longer than 24 weeks.
Peginterferon Alfa-2a and Ribavirin for 16 or 24 Weeks in HCV Genotype 2 or 3
The New England Journal of Medicine
Mitchell L. Shiffman, M.D.,
Accelerate Stats
Genotype 3 Rapid virologic response
Yes…..187/219 (85)
No……57/145 (39)
Patients who do not have a rapid virologic response should not be considered easy to cure and should not be offered abbreviated treatment.
Understanding HCV Nonresponse and Identifying Candidates for Retreatment
Mitchell L. Shiffman, MD
For patients with genotypes 2 or 3 who relapsed after their initial course of treatment, retreatment for a longer duration, from 24-48 weeks, is also a logical approach and supported by a retrospective analysis.[21]
However, no prospective data are available to support this approach.
CS
C.
As to my results, I believe you have misread the results.
It is not a HCV Antibody test, it is a HCV PCR test. If I would have been UND the result would have read
Hepatitis C (HCV) PCR: NEGATIVE
On the next line it explains that there was DETECTABLE virus below 80, but that it was not quantifiable. It does not say undetectable anywhere.
How I understand it is that they do there testing in stages. They went down to the sensitivity of 80 IU/ml and there was detectable virus.... so they did not go further down to their most sensitive test, which is 20 IU/ml.
The result means that there is detectable VL below 80 IU/ml
Marcia
Marcia
The log drop is still a huge drop, which is certainly showing your system is responding well to the meds. I guess some more research is on the cards for your decisions; maybe we should all boycott Dr D's site until you manage to post him?
Thinking of you heaps Marcia; I hope some others with similar historical results will come to the aid of the thread with their experiences...
Denise
Geno 3a
Baseline VL 1.300.000
no biopsy due to slow clotting factor (swimming in the dark reg. stage, steatosis, etc.etc.)
2 ultrasound scans confirming no irregularities anywhere
45 years old, other wise healthy
56 kg, weight based Riba 800mg (14,3 mg / kg)
180mcg Pegasys
So I have been receiving SOC, no underdosing or anything.
I had asked Dr. D all these questions before and he suggested that he would probably try to give me a bit more Riba, but my doc wasn't up to that.
His answer as to extending was that if EVR, he would add 24 weeks to tx after reaching UND.
I am already happy I got my doc to do the 8 weeks PCR, as they usually do 4 and 12. I was trying to get a 6 week PCR, but we compromised on 8 weeks. I have stressed to her that if I UND at 8 weeks, I would like to add 24 weeks to that.... bringing me up to 32 weeks.
Marcia
-- Jim
Eric
If I were you i should start to advocate for 48 weeks.
I also thought about Dr Ds aproach about extending 24 weeks
after UND.
But i dont think there is any studies backing that up.
ca
PS if you write in to dr D ask him what hes backing that up with.
You and I both put alot of thought and planning into our tx. But as we are learning, the path tx take cannot be predicted. Ah, the thing we can't control...blood levels! The one thing I know I didn't factor in, LOL!
Thank goodness for the forum. Keep researching, keep advocating and you will win this in the end. The big picture is SVR and you can still get there. :-)
Love ya, sis!!
Izzy
4 weeks 12.4
5 weeks will get result tomorrow, but I'm sure it's much lower, as I have deteriorated since last week.
VL from 1.3 million to below 80.... I would say the Riba is working and I don't think I should up the dose, as I am feeling mighty bad already
I don't believe there are any studies out there that would support just adding a random 8 weeks to treatment - it would be do the 24 or do 48 unfortunately. I had wanted to do 60 weeks and the doctor(s) told me (including Jacobson) that if they didn't have hard evidence that something was beneficial it was not worth just adding extra time helter skelter.......so i did the 72. The good thing was it worked and was worth it.
Anyway, 80 is practically nothing and most likely you will be UND at 8 so technically you really are still well under the 12 week window. It just matters how very aggressively you personally want to treat or not. I can't imagine that the 80 count will still be there at 8 so I wouldn't sweat it much.
Believe me I know how you feel - I know it doesn't make it any easier but...there are a lot of us SVRs out here who did not get an RVR (I did have an EVR at week 4 but never cleared until between 12 - 24 so yup I get the pain at wanting to write that I"M UND email, I sure do!).
deb
Dr. D. doesn't suggest adding 8 weeks to tx. He suggests that genotype 3 should add 24 weeks to the time of UND IF EVR.
This is tx he suggested to me:
UND at 4 weeks or before 24 weeks tx (SVR)
UND at 6 weeks would mean 30 weeks tx (EVR)
UND at 8 weeks would mean 32 weeks tx (EVR)
But
UND at 12 weeks would then again mean 48 weeks tx
If not UND at 12 weeks STOP treatment.
I am not in a great hurry, and hope that there will maybe come some more literature on this in the next few months. I mean, I have almost five months to work this out. And she is willing... She suggested herself that she will look for studies on this subject. She really takes her time and we always have long discussions when I'm there. She's actually really cool about stuff and she loves her work very much. I know that we will be able to figure out something. She just doesn't want to do something random with no evidence of it working. Fair enough.
Marcia
Marcia
My four week VL, which was HCV RNA PCR, came back less than 75 IU/ML, and I was told by my doctor that that was undetectable because that's as far as the test will go. You're not much over that at 80, right? Did you have that same test?
Keep plugging away. It sounds like you're SOOO close. And you're right about on the same schedule as me as far as your HGB and RBC drops. As soon as I went on Procrit, those levels came right back up to normal and I've been able to reduce that Procrit and I'm still stable and have been able to maintain my 1,000 mg Riba dose.
Hang in there, Marcia. You're going to make it.
Nancy
I'm still meditating for Unnnndddd, unnnnddddd, unnndddd, lol, but realistically,is it even possible to go from 30.3 million to und in 4 weeks? Has anyone done that?? I was getting ready to ask y'all for clarification on how and what to fight for if I DON'T make it. Pretty frustrating to think that I'm dam'd if I do, (to 16 weeks) and dam'd if I don't. I'm starting to think that for my situation, your numbers might be better.
Getting nervous here,
cathy
As to your question.... I have learned that anything is possible with this disease.
I'm rooting for you!
However, I personally would continue treatment. Even with the near death experience of overdosing with Infergen, the doctor kept me at that dosage for four months.
At any rate, whatever you decide, I hope and pray you clear once and for all. God be with you...
Magnum
I'm sort of in your boat. I had a log drop of 3.4 at 4 weeks and VL of 110. My GI was very happy with the results. Me, not so much. I went to a hepatologist @ U Miami for a consult and he was pleased with the results too. He suggested that if I was really worried about SVR that I might ask my GI to extend 8-12 weeks. He said statistically there wasn't much data to support a 2-3 month extension for g3, but that it couldn't hurt. My GI didn't do a PCR at 8 weeks. I will have my 12 week PCR in 2 days. The GI wasn't so much in favor of extending based on the week 4 PCR. She said we'll wait and see @ week 12. I'm still going to push to extend to 32 weeks minimum. I hope your doctors are receptive to do whatever it takes to get to SVR.
I know people can get all gloomy and doomy about g3 and RVR. With my week 4 PCR, weight, dose and little patches of fatty liver, the hepatologist said I have about an 80% chance at UND, and 70% at SVR with 24 week tx. Good odds but I like my options open.
Blessings!
~c
jasper
I'm still waiting for my bloodwork to be scanned into the doc's website. I thought "How cool is THIS?" when I first saw how quickly I could see my results- one day later! But this second one was drawn on Thursday, and nothing has popped up yet, so it's a wait and see game again for the CBC's for now. I have a feeling it's nothing like the wait between 4th and 8th week though, and I can feel your pain already.
Hope you get to feeling better soon; hang in there BADSS,
cathy
Marcia, while this might not help you.. this helped me *eventually* with the disappointment of not getting RVR .. you are even closer to your RVR than I was to mine, I had a VL of 217. My UND at 6 weeks helped but didn't totally console me until the UND's just kept on coming and now I tell myself, I could have RVR'd later that same day or the next day for that matter... and so could you have. Just the same, we go on the results we have and I think you'll make good decisions for yourself.
I recall your riba being 800mg? I think your doctor is reluctant to raise it .. and yet I'd consider 1000mg in these early stages if you can get her to go for it and if you are in favour of the idea yourself. Your hgb is not bad at all at 12.5 BUT .. having said that, an hgb of 12.5 for one person being not so bad is a heavy hit for another person and it only matters how it hits YOU.
Good luck with all this. Get your rest and take good care.
Trish
You did drop really low from where you started, the emphasis use to be on a 2 log drop, which you certainly accomplished.
I know it's frustrating to wait for the magic word 'undectable' but you are well on your way to accomplishing that.
You have barely any dectable virus! Hang in there! Just like the organ grinders monkey said when his tail got caught in the fan.....
It won't be long now!
Hugs,
Bug
My first test read, RNA positive, below test detection limit of ( < 600 i.u./ml ) and this was concidered a good thing, all the Doc's congratulated me.!!!!
So you should be celabrating ya would be in Canada !!! The virus in your blood went from 1.3 MILLION to LESS than 80, THATS < .0165 %, LESS THAN , LESS THAN THAT!!!! THATS GOOD.
I think you should talk about this with your Doc's.!!!
Harry
I got no rescue drugs and now am waiting till November for 3 mos. port tx PCR. One year is alot longer than twenty four months. So I am hoping to not relapse and he feels that i have 85% chance of cure. The difference is extending for G3a is like 2% more I think. Why beat our bodies up if we don't have too.
Good luck!
Rita
Rita
No offense Rocker but your post makes no sense. If indeed marcia’s odds were 80% why the need to extend. Marcias odds are NOT 80% far from it. If she doesn’t extend relapse is the most like outcome. How long to extend is the question.
Anyone doing 24 and doesnt RVR do not have high SVR rates.
To restate what ML Shiffman has to say
Patients who do not have a rapid virologic response should not be considered easy to cure
Marcia didnt RVR.
CS
CockSparrow... thanks for clarifying the matter.
I think a lot of people are not aware that the 4 week RVR doesn't mean the same for geno 2 and 3 as it does for geno 1.
Our pivoting point is at 4 weeks and there's at 12. So for us it is very important to be RVR at 4 weeks. And if we don't UND by week 12 we have to stop treatment. As they have that point at 24 weeks, if I'm not mistaken.
So I would say we are talking about apples and oranges when talking about treatment plans for the different genos.
Marcia
Best of luck, hang in there..pro
(I'd post some riba links, but unfortunately, I finally deleted many of my hcv related bookmarks)
PS: I had 2 riba dose increases in my first 8 weeks up to 1600mg, and my hgb still held above 11 through out the balance of 64 additional weeks of tx...everyones body is different...;^)
Also, and I know you have a lot on your plate now, you still might want to address the riba/hgb issue I mentioned earlier. Raising riba, if safe, is one of the few things in your control NOW that reasonably could affect treatment outcome. How long to extend, while critical, is a decision that can be made later on.
-- Jim
baseline 13.2
4 weeks 12.4
5 weeks 11.7
The riba must be working, if it went from 1.3 million to below 80 in 4 weeks. The out come is not THAT bad.... but definitely not good enough for a geno 3.
My doctor was happy with the result.... but I'm definitely not!
But we geno 3s have heard we are the easy geno so we whine and whine if not UND by week 4 which a geno 1 never do .( How awful and dangerous if I a geno 3 has to do 48 weeks get a grip geno 3s)
I think we shall revalue apple an orange thinking, also that geno 3 is the easy geno if only doing 24 weeks.
If I´m not misstaken i think I saw a study precented here at the forum not long ago that said that the only geno that could be differnt with better SVR rate if not RVR is geno 2.
**** sparrow if you have the links please chime in also gonna ask za.
Marcia your dragon is doomed got a good feeling for you.
Your friend and brother
ca
I also agree with Jim .. if you can get more frequent PCR's right now, that would be a huge asset to know when exactly you go UND. And I too would push for a Week 5 PCR and no later than a Week 6. I had a Week 4 and a Week 6 and being UND at Week 6 put a whole different spin on it for me. If I'd tested at Week 8 after Week 4, I wouldn't have known I was clear somewhere between Week 4 and Week 6 and it makes a huge difference to how you feel about your outcomes and any ongoing treatment decisions, particularly being Geno 3 and having to make the most of your 24 weeks of treatment and any extension decisions and with your various considerations factored in. I'd strongly consider testing sooner than Week 8.
Good luck, Marcia.
Trish
According to the link the report that Jim posted it says:
In the ACCELERATE trial (for geno 2/3) the SVR rate was 90% in patients with RVR and only 49% in patients without RVR4.
So that doesn't sound too good anymore, unless i prolong treatment and up my chances that way.
Marcia
I gotta find out what to do best out of the current situation.
It's too late for a 5 week PCR... that was yesterday before my shot 6. I will call the doctor and ask her if I can't go in and do the PCR now or at 6 weeks, instead of at 8. But as we cannot pay for it ourselves, there are some things which cannot be just done. I have been turning this in my mind since yesterday. I will always wonder, I know.
"I think a lot of people are not aware that the 4 week RVR doesn't mean the same for geno 2 and 3 as it does for geno 1.
Our pivoting point is at 4 weeks and there's at 12. So for us it is very important to be RVR at 4 weeks. And if we don't UND by week 12 we have to stop treatment. As they have that point at 24 weeks, if I'm not mistaken"
my response--Thank you, I was just wondering about that and you explained it perfectly. I was sitting here (GT 2B) hoping & praying that because I didn't get a PCR at 4 weeks that it is not a major problem for me. Still learning here
Denise
If you take your shot today, you can still have blood drawn today (before the shot) for your week 5 test.
--------------------------------------------------------
Not that anyone is necessarily saying otherwise, but the week 4 test is also very important for genotype 1's -- not just geno 2's and 3's -- and in fact some studies suggest it can help determine treatment length.
She treated again for 48 weeks and got SVR.
The four week test is important for everyone........because when you think about it a geno 1 with bad numbers (like me) has to do 72 weeks to play catch up...not just extend to 48. We ALL wanted that UND at week 4 so don't sweat it it's a NATURAL reaction but a numb er that low could even be a false positive.
Since there hasn`t been done frequent enough pcrs we dont really know what the odds is for someone thats clearing say week 5 or 6 and in a way geno 3 could be a bit luckier geno then geno1.
Me my self , you. kristina, mar had all huge drops and very little virus left at the week 4 pcr, dont see that as often in geno 1s . Mar who had little more virus left then me at the week 4 result cleared with the old protocol 24 w tx 800mg riba and weigted more then you.
Everybody here in sweden that I know about geno 3s except my self ( about 5 persons )did clear with the old protocol, the only thing that stroked me was that they all were at least 20Ibs lighter then me. I was 200lbs on my first tx.
ca
So how knows if they all were RVR lets face it we are still very much labrats.
I'm just printing out all this stuff and will put it in the mail for my doc today or tomorrow. She is searching on her end and I am on mine.
I think I will try to get my doc to go on a compromise and I'll be happy. I personally do not think that I would have to do the 48 with being almost RVR4. maybe EVR8 would be good enough and able to do lets say 32 or to be safe extend to 36 even. I know there are no studies on this... but I'm talking about logic, if logic can at all be applied to this tx.
Marcia
Marcia
You really rock. Here you are with ten kids! You're a dynamo even in the middle of this crazy treatment.
I have you in my thoughts and know from the inside out that you'll overcome this bump in the road. And you and your doc are working together to get past this, which is such a fantastic bonus. Hugs.
I echo what you say about the importance for ALL genos to do the 4 weeks PCR.
I will also suggest the upping of the riba to her. It looks like i am holding up quite well with my hgb... she still has me on the iron pills and other supplements. They upped my whites and platelets and especially my hgb pre tx quite well in a very short time.
Marcia
Might have something to do with why you were not UND at week 4 - viral rep and all of that. Maybe without it you would have been. Don't know if that complicates the situation or not but it's worth discussing with the doctor.
Here in the States its either 24 or 48 weeks geno3. No in between. you really should get another pcr stat so you know where you really stand right now. The more info the better when making these decisions. (MY doc wouldn't let me have an 8 week, which didn't matter because I didn't clear until after 12 but man it made me angry!)
Thanks for all your good wishes and answers and suggestions, your help. I'm gonna read and dwell and turn around all suggestions and advise in my head. Am having to start working through some fog... I can feel it starting to come up. Must be the day after the shot. Weird enough, the shot has given me a little energy boost. I think I'm getting addicted to this stuff. Ha ha... I've noticed that I kind of feel better the day of the shot and after and then get hit over the dead on the following day.
I love you all!
You warm my heart and I'm getting all mushy here.
Marcia
CockSparrow... thanks for clarifying the matter.
I think a lot of people are not aware that the 4 week RVR doesn't mean the same for geno 2 and 3 as it does for geno 1.
Our pivoting point is at 4 weeks and there's at 12. So for us it is very important to be RVR at 4 weeks. And if we don't UND by week 12 we have to stop treatment. As they have that point at 24 weeks, if I'm not mistaken.
So I would say we are talking about apples and oranges when talking about treatment plans for the different genos.
Marcia
Some weird stuff happening here
I disagree with you here. It was an American Dr. (Dr. D) who suggested to me that one should add 24 weeks to EVR for geno 3.
And lolitriqui confirmed that's how they treat in NYC.
Rita
I certainly do not agree with you on this one. Detected is detected. My test only went down to 80. If I would have had a mores sensitive test, it would still have been detected.
It would maybe have shown a number of 75 or 50 or whatever... not UND
Marcia
Thanks for all your help.
marcia
"In Bergen County NJ which is 10 mins. from NY city, my doc who also works on research and trails said 24 or 48 weeks. He said an extra four or eight shots didn't do all that much"
That is exactly what Dr. Jacobson in NYC said and he is one of the biggest experts on this in the entire world.
----------------------------------
"you are right; numbers only exist for 24 and 48 w TX; in macia's case, she would have been UND with tests we use here in the US anyway"
I have no idea what this means..................not when we have tests that go down to "2" but from what I believe Drusano was wiped out a long time ago and they opt for the 48 week for the harder genome of 3a (3 is harder than 2 and I don't believe should be treated teh same way) look at FLG and Kal and all those 3as (never met a 3b) who have treated and then had to retreat again for the 48.
It just makes sense to try and do the whole magilla and get every bit of the odds the first time that you can - rather than have to wait, increase dosages and then do it all over again LONGER.
I probably never would have treated again had that been the case (well I guess I would have had to but...to me it seems so much harder it's not worth it).
Marcia
"The reason I did not put in a link earlier was that the main source I had was in German! I have now found one in English. Especially note the second section called "What about Slow Responders?" Here we go:
http://www.hivandhepatitis.com.....107_b.html
Here is the German link as well:
http://www.hepatitisandmore.de.....15_S16.pdf
The German article is from "Hepatitis & More", a magazine for further education of hepatologists. The chart at the bottom of the last page suggests a new consensus for treatment regime for genotype 2 and 3. You should be able to understand this even if you don't know German. Note "Peg-IFNa + > or = 12 mg/kg Ribavirin". Figure 10 and 11 on the second to last page will also be of interest to you.
My ex is now scheduled to participate in a study for relapsers of genotype 3. He will do 48 weeks with weight based dosing. In his case this means 180 mcg Pegasys and 1200 mg Copegus.
Best wishes,
Zazza
P.S. Here is another link:
http://www.natap.org/2007/DDW/DDW_01.htm"
My doctor did say ideally, 48 weeks is better for 3a but I had a low viral count (450,000) and he thought 24 weeks would be enough.
RIta
I noticed Zazza had an article in German....is that one of your languages?
I am no expert on tx, I relied on advice here, and instinct & I was lucky.
The only factor that was noticeable on me was a 4 pt drop in hgb in the first two weeks. By the time I got the blood test back, I was on week 3 and was und <50.
You are small and your dosage looks appropriate, but why the iron supplements? I had always heard be careful of iron while on tx.
Take care.....hope you're not stressing as much as you sound, I know you want to get this right....
Hugs,
Bug
And no problem with the German, I grew up in Germany and it is actually the only language I don't have a foreign accent in. :-) And a lot of Danes had German in school like they did in Sweden back in the days, so I might be lucky that one of my doctors speaks it, probably the older doctor (the overlæge).
I will read and print... I am high lighting certain passages in the reports, too.
Hugs, Marcia
nygirl:
Might have something to do with why you were not UND at week 4 - viral rep and all of that. Maybe without it you would have been. Don't know if that complicates the situation or not but it's worth discussing with the doctor.
Please do not take any offense by what I have to say now, but I really felt that I need to address this comment you made, as i feel that you are saying something without knowing the situation. The body needs adequate levels of everything to function properly, so certain deficiencies are not good and sometimes have to be supplied with vitamins, also iron.
I assume that you are referring to the low dose of supplementary iron I am taking and should have maybe inquired, why I am taking them.
So now I will explain:
My hgb and all my iron counts were on the low side before starting tx and my doc and I decided that we need to bring them up. And it worked with the supplements I am taking. She was and is still monitoring me closely. My hgb went up to a reasonable amount and the other iron counts were still lagging behind.. They have finally also come up to a reasonably level.
Jim:
The same info as I presented should be on the Procrit (epo) package insert, or at least it was. Here's same thing again from Cleaveland Clinic and although not HCV specific, the principal stands that Procrit will not work with inadequate iron stores.
https://www.clevelandclinic.org/myeloma/Procrit_phaseII_less_frequent.htm
"...Must have transferrin saturation of at least 20% and serum ferritin of at least 50 ng/mL If transferrin saturation is < 20% or serum ferritin < 50 ng/mL, the investigator may utilize bone marrow evaluation results or clinical judgment to determine if iron stores are adequate . If inadequate, the patient will be supplemented with iron..."
You see, my transferrin for instance is only at 30, so it has to be monitored not to go further down and my ferritin level has been constantly around 40 and has now finally gone up to around 300. (a bit over the marker, but adequate if Procrit need so be administered.)
She told me to go on with the iron, because I still seem to need it. If I wasn't doing this, I will have problems with Procrit administration, which I most probably will need at a certain time.
So I must say that my doctor is very watchful in this regard and knows exactly what she is doing.
Marcia
As to the iron, I have to take iron supplements, because all my iron counts were either too low or on the border of being too low. Everything had been steadily dropping before tx incl. my hemoglobin levels.
Thanks, I'm actually not stressing, I just get really busy, when I want to organize myself. I always knew that this was going to be a possibility... as one never knows where this journey is gonna lead us... :-)
Just need to get all my ducks lined up again, as they where lined up for another route... New route... new line up.
Hugs,
Marcia
Marcia
And personally, I do not think it is possible for me to switch doctors just like that. We live in an organized health care system, so I would need to find out, if it was at all possible and what other options I would have. But it hasn't come this far anyway. I'm just two days away from the news. So nothing drastic for me at the moment.
Marcia
jasper
jasper
I must say for me that I want to be more open minded than the either 24 or 48 approach. A lot of studies are happening at the moment. We are trying to improve tx and not to get stuck to the rigid ways. A new era of tx is emerging, where doctors are more an more realizing that tx needs to be custom tailored.
A new study one suggests ie. that geno 4 should actually be treated for 36 weeks. They have recently been thrown in the same pot as geno 1 and they are realizing, that they are actually somewhere in the middle, but harder to treat than 2 and 3.
With geno 3 they are realizing that we are not as easy to treat as geno 2, but are somewhere in the middle, too.
So, me being a thinker and always open to new suggestions: This is when I start brain storming... using my own logic, but also based on existing info and studies.... I might be incorrect of course, but it makes sense to me... so here we go...
It would not astonish me, if in the near future they would come up with the same 36 weeks suggestion for geno 3 who don't RVR4 but EVR, as they did for geno 4.
This pattern would make sense as it does for geno 1 slow responders. They don't do 96 weeks instead of 48, but do 72 weeks. That is 50% more tx, than the initial tx.
Wouldn't it make sense to have a geno3 EVR do 50% more tx, than the initial tx, too?
And then if a geno 3 is a slow responder, UND at 12weeks, one doubles the tx to 48weeks.
This is more or less what Dr. D. was suggesting. Do 48 weeks if only UND at 12 weeks, if not drop treatment and regroup.
So to me it only makes sense to extend to 50% more tx or whatever formula they use EVR + 24 weeks (or 30 weeks)
It is not the theory of adding 8 or 12 random shots, but adding a certain amount of weeks after EVR. Even if it in the end looks like one is adding 2 months or 3 months, but that is not how the math works.
Okay enough of my brain storming for the time being
God Bless,
Tammy
Marcia
God bless
Marcia
I think it's excellent that you're researching tx extension options but that will not help you NOW. Personally, what I would be concentrating on NOW is how to get UND ASAP. Two things that have been suggested are upping the ribavirin combined with weekly viral load tests until UND, or at least a week 8 viral load test. I would make that my focus. Also, if you need Procrit to handle more riba (your iron stores appear adequate now) then ask about starting Procrit. You might also ask your doc about double-dosing the interferon until UND although the only studies I'm aware of double-dose from the beginning.
You could also add an addendum to your question to Dr. Dieterich in the professional forum both about increasing the riba and double dosing. Again, you have plenty of time to decide on whether to extend treatment and for how long. You have very little time to decide on whether or not to increase your riba and/or Peg and order a viral load test for next week.
-- Jim
About ordering another VL for next week, a 6 week PCR, I cannot order it. I will not get another PCR before the 8 week mark. That gives me 4 weeks to down my VL from below 80 to UND.... I personally do not believe that I need to double dose or increase the riba to achieve that small a drop in the time of 4 weeks... I might even already be UND now. ... but I will never know... That's why I am not focusing on this last drop as ... I would have, if my VL was still, lets say, up in the thousands.
From 1.3 million to 'almost' UND in 4 weeks shows to me that the drugs are working. They just didn't have that last little edge.
I'm not sure, but I don't think I'm totally off here on this one...
Marcia
Also, if you move to the US as your next country, I'll refer you to my doctor. He is HOT I tell you. Looks like a rock star!! LOL
Wishing you the best my fellow g3a sister.
RIta
I've got the bad hots for my own hottie and he is a star, too. Bad a§§ bass player, singer and composer... so I really got all i need.. :-) But thanks for the offer...
Being something which a lot of people refer to as a health freak and usually avoiding all kinds of meds, unless absolutely necessary... being 100 % organic in food, skin, household etc. products. Vegetarian, no eggs, etc... (occasional fish or seafood once or twice a year) etc. etc...
My problem with doing 48 weeks is not doing the 48 weeks if necessary... but why fill my body with extra months of this poison and risk thyroid, diabetes etc... if it is not absolutely necessary... If it is needed, I'll do it, but if not... why should I...
So I'm not trying to get out of the 48 weeks for reasons of dreading it, which by the way I do... don't we all dread every day of this?.... but that is not the reason I would prefer not to do it.
Thanks again.
marcia
The meds are poison. I noticed that some of my teeth got loose, not ready to fall out but I wonder what would have happened with a longer tx. It's scary!!! I used to get sharp pains in my cuticles on my hands and feet. The phlegm I coughed up was unbelievable all day. That has subsided somewhat now. I had some weird sides not to mention the fatigue and not being able to breath at the slightest exertion..like making my bed.
Like the rest of us who have gone through treatment and those of on it, this disease is a wait and see from beginning to end.
Rita
http://www.hivandhepatitis.com/2007icr/easl/docs/050107_b.html
http://hepatitisandmore.de/archiv/2006-2/HEPandMORE_2006_2_S12_S13_S14_S15_S16.pdf
Notice how Berg (in the German article) in his suggestion for new tx consensus for geno 2 and 3 suggests that with no RVR tx should be extended to 36-48 weeks. RVR being defined as UND at week 4 with a test sensitive down to 10 IU/ml.
Berg also suggests that 16 weeks tx for geno 2 and 3 should only be considered by those who are RVR and have low baseline viral load and no cirrhosis. Being RVR but having high baseline viral load and/or cirrhosis equals minimum 24 weeks tx according to his suggestion for a new consensus.
That's exactly the kind of stuff I am looking for. I will translate the German article to English or Danish, if I have to. In case my doc doesn't understand it.
I had high baseline VL, so 16 weeks was not even considered... especially with my Afro American background. But that was what I had understood from the ACCELERATE study, that 16 weeks was only for low baseline VL.
Thanks,
marcia
That's where the extension information comes from - the most current information that we've all been going by and the reason I extended to 72 was a combo of Berg and Sanchez Tapias........that is the model that the doctors now use as the bible.
Berg suggests a new consensus for g2 and g3:
with a test to the sensitivity of 10 IU/ml
Pegasys and Riba ca 12mg/kg (in contrary to 15mg/kg for geno 1)
if low VL and RVR - 16 weeks
if highVL and RVR - 24 weeks
EVR at 12 weeks - 36 - 48 weeks
So what I can see from his suggestion that with an EVR at 8 weeks... 36 weeks of treatment would be in line of his theory.
Marcia
Marcia
She should give you the best opportunity possible - IF you don't clear what time slot are you then looking at 72?
Look at DebC having to do 72 weeks of INFERGEN - at the end of the day give some thanks that you aren't stuck looking at that one - but believe me regular old SOC for 72 weeks is a long time.
'All of the G3s I can think of who relapsed did 48, I don't remember one who did a different amount.'
Also, I am not a relapser, so you cannot compare my case to all the geno 3 relapsers you can think of.
I am a treatment naive geno 3... who did not RVR, but I'm almost RVR.... I frankly don't see a logical reason why I should not clear the last -80 viruses fairly soon, if I cleared 1.299.920 in 4 weeks. The logic of jumping to 72 weeks at this time, just doesn't make sense to me.
If I wouldn't clear or would relapse, I would look at 48 weeks and not at 72... Just like all the geno 3 relapsers you were speaking about before. At least the first time around... If I would relapse again... than we could talk about 72 weeks...
I hope I did not misunderstand you, but if you reread what you have written and didn't mean to write it that way, please rewind, erase and rephrase, because that surely did not come out right, unless you meant it that way.
I am referring to your following comment, which was in my opinion completely out of place:
'at the end of the day give some thanks that you aren't stuck looking at that one'
... I don't think that it is your place to be telling me what to be thankful for or not...and how to give thanks. That is strictly my personal business.
Marcia
Marcia
I'm a Geno 3a who did not respond to previous treatment. I was still detectable at 12 weeks and they continued me on til the 24 weeks and I was still detectable at EOT. This was 4 years ago.
This experience has lead me to believe that G3a is not the easy to treat geno that it was previously thought and this time round I have pushed to extend my tx to 48 weeks despite having been on a PI trial and achieving UND at 4 weeks.
My reasoning behind this is that I had a forced RVR and that my immune system obviously needs as long as possible to come to grips with suppressing the virus. I want to beat it this time and hit it as hard as I can.
I guess what I am trying to say is go for it Marcia. I hope you can get your team to extend your tx for at least 24 weeks AFTER you achieve UND (which I am sure you are going to as you are SOOOO close).
I believe you have to give it everything you have got right now.
All the best to you xxxxxxxxx
if you do 36 and dont clear you are facing a total of 84 weeks as I am doing 72 alltogether.
I think they only want you to be aware of that in all well meaning.
As I said in a pm i trust your judgement you are both a fact collector and a gut person.
youl be just fine.
ca
From my perspective they were only trying to help come to terms with this.
All of us are going through stuff, none of us more special than anyone else, I truly do not think I am. I think point was wait till you get that bridge when you get there, then cross the week bridge,
We are all here to help each other, while we each "own" our own disease, we lean on each other, and our Doctors.
Sorry, but please slow down.
Deb
Hugs,
Marcia
On top of having my request fulfilled, I also got a whole lot of good advice, which i am thankful for.
In the end it will be her and I who will decide how to go on anyway. And it has to sit right with me.
Thank again, bro.
Marcia
I didn't really understand why when I address one person, a whole lot of others start jumping on me.
Based on what you said, I have no firm opinion on whether you should be on supplemental iron or not other than to say that in most cases it is ill advised.
Your case may be different although I seem to remember some specifics you posted in the beginning and at that time it did not appear you needed supplemental iron but my memory may be foggy on this.
I believe my suggestion then was to get another opinion re iron supplementation as it was above, i.e. ask Dieterich if you need it.
I do hope you are UND in the next couple of weeks as many are assuming, but this is not always the case as I believe NYGirl, for example, was close to UND at week 4 but remained detectible at week 12. That was why I suggested to focus on right now (more frequent tests and perhaps more riba) as opposed to focusing on how long you should extend, as you will have plenty of time to focus on that in the future, plus you will have more information then such as when you became UND. Forgive the redundancy but I really don't understand spending so much time an energy on how long you will extend since you aren't even UND yet and it's only week 6. When I was still detectible my total focus was on becoming UND. I started to focus my energies on extension as I approached the end of SOC which in my case was 48 weeks.
-- Jim
Nygirl had a quick drop in VL at four weeks to the 400's but had no further drop by week 12. I did a total of 86 weeks and believe me i truly want anyone to tx enough the first time for the best outcome. For me having to start all this over makes me cringe.
I really wish you and everyone the best outcome the first time..... I hate these meds.
Best to you......cando
Just so you are aware, and I am a Geno 1, if a Geno 1 hadn't cleared before 24 weeks, they would generally be considered a non-responder and be pulled from treatment at that point unless a personal decision was made to be a maverick and try something different. Extending to 72 weeks as a geno 1 would be a definite consideration and recommendation if not UND by 12 weeks.
If you read your very first post... then down to where you are later... you will see how your thinking processes have evolved. You start out being VERY upset that you didn't RVR and eventually .. after everybody responding and you processing various opinions and your own thoughts as a result of those opinions, you seem to have gotten MUCH more comfortable with your RVR which is good not to be upset about it and for you to be thinking much more rationally and less emotionally....but also good to address logically what it means to be not RVR at 4 weeks.
As for people jumping in when you are addressing someone else, I will gently say I have seen you do it plenty yourself .. we ALL do it. It gets done when someone wants to support another person's position or if we think someone is misunderstood or being treated unfairly. Whether we should or not is another story.. however, I think it's a natural thing to do and I don't think anyone was "trying" anything. Okay, enough on that and I agree with jasper.. it's a good thread so let's not let it get out of hand and cool some jets here.
Really... I don't know why 4 weeks is RVR for a geno 3 when that's the same as the 12 week mark for a geno 1. You would think that an RVR would be earlier somewhere. Don't know where but if extension of treatment happens if not UND at 4 weeks, that certainly ain't what I understand RVR to mean, more like EVR. Anyway...just thinking out loud on that one.
I again concur with Jim .. it's important to get UND with this virus as soon as possible and it ain't over til it's over either. As long as virus is detectible, it's detectible. As you put it so well, either it's detectible or it's not. Not kinda detectible.
And then there's the rock and a hard place. If you can't get your own PCR''s .. and we can't here in Canada either....then you're stuck if the doc won't order them or CAN'T order them because the healthcare system doesn't approve that.. again, same as in Canada. Because I live close to the American border, I would have gone south to get one .. but ended up in a clinical trial instead with a lovely amount of regular PCR's and quant ones too instead of the qual ones I would have gotten in our healthcare system til 12 weeks.
Either your doc will order up more riba or she won't. Either you want to go that route or you don't ... my personal opinion is to take it .. not only to get clear .. but to KEEP it that way and to get good firepower early. I'm not going to apologize for having that opinion - and by that I mean I think it's important to say that. At the same time... in the end, we all do what we think is best regardless of what someone else's opinion is .. and I wish you the best with your decision making. I'm well aware, as is everyone on treatment, that these decisions are very difficult and in the end we all do what we think is best.
In my class this evening we talked about a principle called the PDCA cycle, a W. Edward Deming principle - Plan Do Check Act. We Plan, we Do .. then we Check what we have been doing and then we Act once we see if we need to remedy anything. What I notice.. is that we Plan and Do. Which means we Do what we think is best .. at some point.. one has to Do and hope for the best.
I wish you the best, Marcia as you Plan, Do, Check and Act. :)
Trish
Sorry about the sides... I haven't met a 3a that didn't have awful sides... which leads me to believe the possibility exists that the IR and the Steatosis that seems to affect 3as might be the culprit behind the sides.
Anyhow - I just want you to know - I didn't clear until LATE in the game.
I didn't have a clue that I was supposed to continue on... And I'm so very thankful that I didn't know until CS told me.
I'm sending you tons of hugs and much hope for the next PCR....
Much love
Meki
I felt physically beat up. When I mentioned that I'm so beat up etc... it was because I was seriously hitting the wall for over a week and could hardly type even lying down. I was even amazed that I made it to the doctor. My son had to prop me up all the time at the hospital. I felt overwhelmed with all the great responses and couldn't keep up with the flow and thanking people for their replies. And all the notes and pm's wishing me well. I had to take a few hours break in between.
In my first post, I post all the facts and say that my doc usually doesn't prolong, but is open to it. She is looking for studies and so am I. And I am asking if anyone can direct me to studies supporting the fact of extending for geno 3, according to what Dr. D. advised some months ago.
In hindsight, to avoid any misunderstandings, I should have maybe have kept my post very short and ONLY said...
'I would appreciate if anyone could direct me to studies of extending tx for geno 3.'
Maybe I am giving too much information and should be more private in the future. It's just that I thought that I felt comfortable opening up to people on the forum.
I agree with you that they should differentiate RVR and EVR etc for the different genotypes. It really doesn't make sense, as they don't mean the same.
As to my comment about geno 1 , 24weeks and extending to 72. I did not mention a g1 NOT clearing at 24 weeks, but a geno 1 clearing BEFORE 24 weeks. I am well aware that geno 1 gets pulled off tx if NOT clear by 24, as we do if NOT clear by 12.
Good luck to you with your treatment.
Marcia
We all face different stumbling blocks in our treatment and post threads looking for information to help us advocate for ourselves.
We all feel passionate about doing everything we can to cure ourselves. In the end, we have to be at peace with our decisions. None of us wants to look back and wish we had done things differently. With all this at stake, it is easy to come off as strong in our opinions and with our words.
We should never forget that we are all here support each other. We are together in this.
Marcia, I would like to take this opportunity to thank you for all the kind works and support you provide to the forum. I wish you the very best outcome in your treatment.
Whoopsie
I'm going to break down all my thoughts about the iron subject concerning myself... there is no offense taken on my part and I am not trying to offend anyone... So this is how i see it:
Btw, I did post ages ago with my list of supplements that I was taking iron and there have been discussions about it. Also all the other supplements I am taking are supplements which are supposed to support viral breakdown. All the discussions we had on the vitamin threads.... NAC, ALA, glutamine, selenium, coenzyme10, etc...
I trust my doctor with the iron, as they are a whole team and discuss their patients at weekly meetings together. It's not only her personal opinion. She was also specific in which kind of iron it should be. I am taking 25mg of aminochelated iron with my lunch and part of my supplements every day, about 6 hours apart from each Riba. And at my visit 3 days ago she specifically said that I should continue them, as I still needed them.
Some of these people might be the same people who advise me not to take 25mg, not being aware of that they are consuming around the same supplementary amount of iron as me.
There is NO iron in my multivitamin, so this is a difference o 7mg.
Most people get iron from meats, liver, eggs, milk products, oatmeal and fortified cereals, all of which I do not eat. So far I think I am the only vegetarian who is almost vegan on the forum. I obviously have not been getting enough from my food and need to supplement. I don't eat any vitamin fortified products and make all my food from scratch. I'm sure that people who eat those products consume more than my 25mg iron per day, plus the Centrum Silver. Just a serving of commercial cereals has 18mg of iron. And I believe that many other ready products are vitamin fortified.
So I believe that I might actually be getting less iron with the 25mg supplement, than most people are getting, thus the concern of that having influenced my VL to be unfounded.
I have had many problems with anemia and extremely low blood pressure when I was younger, years before I became vegetarian. Especially in my child bearing years. So I guess I might not be a clear cut regular case on this one. And my mother always had problems with low blood pressure and anemia, too. I don't know if that at all contributed to her getting megaloblastic anemia, then MDS which then finally developed into leukemia when she was 74. As they do not know why people get MDS.
Marcia
Here is the answer to your question about what ticked me off, and maybe wrongly.
The reason I got short with nygirl was because of this.
Look at DebC having to do 72 weeks of INFERGEN - at the end of the day give some thanks that you aren't stuck looking at that one - but believe me regular old SOC for 72 weeks is a long time.'
And BEFORE I got short with her I clearly stated this:
'I hope I did not misunderstand you, but if you reread what you have written and didn't mean to write it that way, please rewind, erase and rephrase, because that surely did not come out right, unless you meant it that way.'
So I thought I was very clear on that one....
So I didn't rule out it being a misunderstanding and nygirl could have just verified that and I would have apologized for misunderstanding her.... But nygirl hasn't been online yet and some of the ladies out of solidarity to her, jumped me in her defense.
I have apologized on the forum before and will always do it again, if I made a mistake. I have no ego problems.
Marcia
Hugs,
marcia
And thank you for all your kind words!
Hugs,
Marcia
'at the end of the day give some thanks that you aren't stuck looking at that one'
... I don't think that it is your place to be telling me what to be thankful for or not...and how to give thanks. That is strictly my personal business.
----------------
You know Marcia I wish you well but it's these kind of comments that show people exactly what you are really about here. You SHOULD be grateful you are not looking at 72 weeks - to say that its' not my place to be telling you what to be thankful for or not - Jez what an insult when all I've tried to do is encourage you the best I could.
If you want to keep making up math formulas and trying to find the secret Geno3a success ratio here good luck. You've gotten good viable information but still managed to ignore it and the spirit it was given in and be extremely rude and condescending.
I don't have time for things like that in my life and since you don't seem to appreciate any of the time I've wasted - I'll stop "telling me what to be thankful for or not...and how to give thanks' and let you try and figure that one out on your own, if you are able.
Good luck
So I did NOT misinterpret your comment, as some of the people suggested.
You ARE telling me that I SHOULD be thankful for what YOU think is appropriate for me to be thankful for.
That is exactly the kind of condescending arrogance I cannot stomach.
I am really not going to get into this, as I do not feel the need to have to justify nor explain my spiritual beliefs nor my relationship to God, to you...
I will leave it at this.
I thank you for taking the time to try to help and for all the times you did help before ... but I will leave it at that.
Good luck to you too.
Marcia
----------------------------------
Hopefully, you have not let that influence your decision not to seek another medical opinion about taking supplemental iron.
Centrum Silver in the United States has had NO IRON in it since 1999 and that is with hepatologists here in the United States often recommend it.
Here is the ingredient list from the manufacturer's web site:
http://tinyurl.com/42gd9t
The ingredient list may or may not be different in your country but that's not the point.
There is a reason hepatologists tell their patients not take supplemental iron but its OK to eat iron rich foods. You can not equivocate the two.
I'm not saying you don't need it, I'm just questioning it now like I believe I did back then. And if I were you, to be prudent I'd also be questioning it from a source independent from your medical team. At least that's how I approached things during treatment.
Obviously, it's good to have faith in one's medical team as you've stated, but not blind faith. If you felt they knew everything I doubt you would be posing questions here.
-- Jim
Your priority is now to become UND. Riba dosage and iron supplementation therefore are two issues that need to be addressed immediately, one way or another. The issue of how long you treat can wait, and in fact is somewhat academic since you're not UND yet.
Good luck.
-- Jim
Btw, my decision on taking iron had nothing to do with centrum silver nor with any info I got here. All but one person here on the forum seem to be strictly against taking iron.
It had solely to do with my own case and my own situation of deficiency. So far I have not seen anyone in the same situation as I am, here on the forum. I have seen many people concerned about too high iron counts, but none of too low counts pre tx. This might also be part of the reason I have coagulation problems.
Jim, please don't get me wrong... and I do not mean to be less than thankful for your concern about my iron intake, but I have at no time asked anyone's advice on the forum concerning me taking iron supplements.
I have placed questions about a whole lot of things, but not about iron.
Marcia
you have stressed this several times now and I have read it.
Thank you
Marcia-- don't take this the wrong way as you have stated in MANY replies to other members in this thread ! but don't you think you might have some RIBA RAGE going on!
When I share here and someone hurts my feelings I NEVER retaliate over and over again to that member and then to CONTINUE with other members!
This is ridiculous!
Who cares how long you have to treat!!! REALLY ! Just treat as long as you need to!
Bottom line is to get rid of this ****!
Lets stop this thread now!
Dorsey
Calm down, take it one step at a time and see where it goes and make your decisions according to the results you get as treatment goes on.
Personally, If you could for the time being, stop taking other drugs such as iron and vitamins and try to eat a regular healthy diet if you can. Being a vegan on treatment is not a good idea in my opinion. You need minerals and vitamins from MANY different sources of food. I was told to eat healthy and avoid other drugs unless they were an absolute necessity with Dr. approval. You just don't know if anything even a vitamin can throw off treatment. My medical team never even told me to take my riba with oil or fat. They said eat cereal and nuts and fruits as a snack and FRESH home cooked food in small portions.
Please don't take this the wrong way.
I hope you the best with your treatment!
Rita
Rita
------------------------------------
Only because this thread seems to lack controversy and drama, I thought I'd add my two cents to the above.
In general, "Zazza" is correct. The more ammo and the longer you shoot that ammo, the better your chances of SVR.
But to me, the real question is AT WHAT COST.
To me, an equally if not more resonable approach to extending is to stop treatment, cut your losses, gather your strength to fight another day. Especially if you have little or no liver damage.
This BTW is certainly not advice to Marcia at this point, or to anyone in specific, but just a general statement of philosophy as I believe Zazza's post was as well.
-- Jim
It is scary not really knowing the amount of damage...
rita
If I offended you in any way, it was not my intention at all... I really appreciate all your help and I think you know that... So if my words at any time sounded harsh towards you, I apologize.
Marcia
I am not raging or anything. Maybe it is weird for some people to see that I can have strong opinions about things. Very often I have let certain comments roll over my shoulder, so maybe people are not used to see me put my foot down when I've had enough.
So no, I am not on a riba rage trip. My eldest son came over a few hours ago to cook some food for me and him, my youngest and I are having a good time.
I was actually only offended by one initial comment made yesterday and reacted on that.... Obviously that comment and my reaction to it created an avalanche...
You never know how things turn out, until they have happened. Maybe I should have just pretended I didn't read what was written to me... But maybe the other person should have thought about what she wrote to me first... There are always two to tango...
God bless,
Marcia
-- Jim
Mike
There will always be someone who thinks one is a total idiot and someone who thinks one is just the best. I tend to surround myself with people whom I have respect for.
Anyway, I was going to stop posting about this, as it is getting way too ridiculous.
And all in all I believe that the conversations on this thread have come to the point of being well saturated.... I will continue on my quest to try to kill the dragon... the same goal everyone on this forum has.
Marcia
I disagree with you here, Rita. As soon as you know you are not RVR as a geno 3, you should consider extending to 48 weeks. You should put your ammunition on getting this approved, not on getting additional viral load tests in my opinion. Nobody really knows how long anybody needs to treat, so it is best to go for the full period suggested, and for non-RVR geno 3s (if you don't consider specific doctors' own suggestions) it is generally 48 weeks.
I gather you do not know my history. I live in Europe and started in a confirming study for geno 1s with low viral load who got UND by week 4 and then only had to go 24 weeks. I had 2 chances out of 3 to be UND at week 4, but had 2900 IU/ml at that time.
Next goal was to be UND at week 12 and thus go 48 weeks. But at week 12 I was detected with less than 15 IU/ml. (Not 80, less than 15 IU/ml.) But detectable is detectable, not UND.
Doctors now suggested everything between 48 and 72 weeks. I did everything I could to convince myself that I would do fine with 52 or 56 weeks for example, but deep inside I knew already that 72 weeks was the only option for me if I should not regret an eventual relapse.
At week 69 my doctor wanted to take me off tx. I cried and fought it, finally finding facts which proved I could continue tx. I do believe I probably was cured already by this time, but in no way did I want to compromise my chances of SVR.
So in my opinion, as soon as you as a geno 3 are detected at week 4, extension is needed. I agree with nygirl that trying to find your own math formulas and "the secret Geno3a success ratio" is a waste of time. Let's leave that to the studies that are underway at present. Our job is to take our shots and our pills for as long as it is needed to get the best possible success of receiving SVR.
I am sort of in a panic now wondering if he told me the truth.
Rita
I am with Rita on this one, wise words from a wise woman! I was told the same thing by my docs. (though I was told to take my meds with Fat absolutly) Getting our Vitamins ect from food, organic whenever possible, is far better than any supplements, which have fillers and additives that could really mess with our Tx. We had the Milk Thistle debate 100x's here. It can speed up the digestion of our meds, and we don't want that, we want them in there killling this damn disease as long as possible, not pee peeed out too soon! ;)
We all know we have a different physical make up and it is so complex. I am a geno 2 and was found UND at 4 weeks. Went from 37,000,000 to 5!! I thought it was a miracle, if you all remember my post! But after reading this thread I am a tad confused now.
My doc told me I would only do 24 weeks. IF and it was a big If, I did not clear by then it was 48. No inbetweens, One or the other period. He told me the only reason he put 24 or 48 on my paper work, was to cover any insurance problems that might pop up.
Marcia you know I am one of those people who you did talk in legnth to about supplements. remember our shroom's ;) experiences! Crazy Danish horses! LOL
Every doc is different and I realize you live in a different country, as did I, but I was told under NO circumstance to take, especially Iron, supplements. I too am a vegetarian. When I became anemiac my doc said I would rather have you eat some food with A BIT of iron, than give you a shot of procrit and especially not iron supplemts! He said NO to every supplement I was taking before tx, except Omega 3. I listened reluctantly. Like you I was/am a big supplement alternative meds fan,but at week 4 was considered UND. Was this because I stopped all my supplements? One will never know. I just know the facts and numbers. Again I am only relaying what "MY" doc told me.
I will do my 12 week labs tomorrow so I am a wreck hoping I have sustained that. He also lowered my Pegasys does because my Liver enzymes started shooting up because of the dosage 180 ml. He lowered it to 135, my liver enzymes immediatly went back to normal with the lower dose. Again proving we are all different, complex machines needing different dosages.
I am very concerned about getting my 12 week VL because if it has gone up because of the lower dosage I will be more than disapointed! I will be devastated I'm sure after achieving UND status with the 180ml dosage. But the meds at that level were wreaking havock on my liver enzymes they tripled since Tx and they were very concerned about that.
All of this talk about continuing after the 24 weeks, even if I acheive SVR, to be certain I wont relapse, is quite frankly scaring the tar outta' me! My doc said nothing about having to prolong anything? Is relapse something common in Geno 2b's as well, if you stop with an SVR at 24 weeks?
Marcia your determination will get you through! This is shot 6 sweetie...you can do this! I did #13 last night and I am still here, a bit worn and torn and achy, a little more aggitated than usual, anemic, border line Hyperthyroid,still waiting on labs on that.
But still, as far as I know, UND at 4 weeks. I realize all the different geno types respond differently but
To think that my UND status means nothing if there is a chance of relapse is really scaring me! :(
Any other 2bs out there that have any similar experience of relapse after stopping at 24 weeks?
Marcia sending you all the best! And I say this with only concern in my heart for you, I would definatly rethink all the supplements...you have a plethoria of great info and experience here! I thank the universe for those who came and conquored before us!
A tad confused Dragon Tamer!
------------------------------------------------
We're in agreement because that's also what I got from your post.
We just need to keep the positive support flowing to all!! I know it makes a world of difference!
I will let you know when my 12 week labs come back next week. Everythings crossed.
When do you get checked again for SVR after stopping tx after 24 weeks???
I thought it was 6 months or so???
Hope all is well with you and yours....
Been a crazy time for me at work... I wish I could be here more often! I hope everyone is doing well and staying positive! Please know you are all in my thoughts and prayers whether I can be "here" or not.
There is always the "great debate" to look forward to tonight!!! LOL ;) If anything can distract us from our ill's and worries it would be that !!! ;)
D.T
I'm sorry .. I just don't understand your response here and you have misunderstood ME completely. You're sorry if you made it sound as if you were beat up about the result? I was DEVASTATED when I didn't hit RVR. Why on earth would you be SORRY and I was never ever suggesting that you should be emotionless about it. You've completely misunderstood my comments and you're being very defensive for reasons I don't quite get. My reason in pointing out the flow of your emotions was so that you would also understand the flow of the responses and settle down with the your defensiveness as nobody meant harm the way you were taking it. A number of us have been there and stepped up to help in whatever way we felt we could contribute.. even though I'm well aware you don't care much for me.. and I'm okay with that.. we're still in this fight together and I just really want you to win. So I threw in my own experiences and opinions. I'm not sorry I did that, I hope it helps you. We're all fighting this dragon and I want us ALL to win.
"So I didn't rule out it being a misunderstanding and nygirl could have just verified that and I would have apologized for misunderstanding her.... But nygirl hasn't been online yet and some of the ladies out of solidarity to her, jumped me in her defense. "
Out of solidarity to her? That's just utter bullsh!t. I consider myself an egalitarian and I have hit nygirl VERY hard on this forum also. I'm kind of weird that way. I said what I said because I call it how I see it, simple as that and sometimes I don't play the political game very well at all and frankly don't care to. I'm more interested in people playing fair than people playing sides and I abhor that kind of behaviour.
Perfectionism is a nasty way to live. Been there, done that.. it's not so great. I'd suggest you let it go and keep it real and I even mean that gently...whether you take it that way is another matter but that is how I mean it.
Trish
Be still my hyperthyroid beating heart. You speak PERT to my Deming. I would ask you to marry me on the spot but alas, a border, a healthcare system, and your economy vs mine at the moment stands in the way. I will have to settle for admiring you from afar, from the branches of a maple tree looking longingly in your direction.
Okay.. that's a bit much.. but geez, that was cool. :) I mentioned Deming to give credit where it was due, is all and you tossed that back so nicely.
Trish
MARCIA..I HOPE ALL GOES WELL
AND THE BEST WISHES TO YOU
I will be routing for you as well as for all of us! My 12 week post is set for Nov 13th.
Let us know how you made out!
Rita
Thanks for getting back on my post. I appreciate it! I had/have some real concerns after reading all these threads....always good to hear back from others when you ask for help...or take the time to offer your support...that is what this forum is here for and I am so thankful when I see it working in that positive direction.
Thanks again Rita.
Wishing all a peacful weekend!
All the best!
D.T
Bottom line geterdone
Wish ya the best on week twelve, are ya a gamblin women?
Harry
Some folks can do this treatment for 72 weeks and live life comfortably --- or with the mild sides.
Some folks plummet at week 4 and can't get back up.
Some folks can do several rounds of treatment....
Some have to quit early --- or after week 2...
This treatment affects each person individually...
72 weeks of this treatment would have killed me... I would have been dead - gonzo -- couldn't have done it.
If someone told me I had to do it again --- I would find the nearest bridge --- say my grace - and be done with it. (figuratively speaking folks --- but you get the concept.... I couldn't have done it --- wouldn't have done it.)
So if someone who had nominal --- or mild --- or even harsh side effects --- and did 72 weeks... BUT SURVIVED... IT doesn't take away from them and their hard times on TX --- but it might make them feel like someone who only had to do 24 weeks were a bunch of pansies...
It might seem that someone who did 24 weeks --- were "lucky".
But I do not see it that way.
I did 24 weeks --- and was blessed with SVR --- and have since learned that is a very special and lucky blessing.
But the only way I made it through TX was one minute at a time...
I could NOT have done more time...
I came close to quitting - because I wasn't functioning... I wasn't capable of functioning 6 out of 7 days.
PAIN - Barfing - PAIN - Couldn't Think - Couldn't communicate - Could hardly move - could hardly breathe... Couldn't walk next door without Barfing or Crying or not breathing well.
And I thought those were normal reactions. Cause the doctors kept telling me nothing was wrong...
(LOL now.....)
Anyhow - sometimes it is hard to view that perspective --- yanno --- the one that belongs to someone else.
Someone who toughed out the 72 weeks --- they think --- "I WISH I COULD HAVE DONE ONLY 24 or 48 WEEKS" "Oh you're so very lucky to not have had to do so long..."
And someone who has had to quit due to complications --- or someone who has a TREMENDOUSLY hard time on TX --- They think --- "I WISH I COULD HAVE DONE MORE"
But in reality --- the length of time ---- truly ---- other than the ability to kill the virus --- is no different ---- it's how it is handled.
Each person reacts differently.
Again --- if I had had a walk in the park TX --- I could have done more... But for me --- the TX was the hardest thing I've ever done. Everything else --- surgery, broken bones --- everything else pales in comparison.
And to me ---- I could NOT have done more.
So it's hard to hear someone say "you should be thankful you don't have to do more"....
I don't know if 3a genotypes are more likely to have a "harder" TX --- or not... The discussion has been interesting about the IR and the Steatosis... So there is a possibility that those might be causing --- or may cause more issues (at least in my mind)
But --- I know if Marcia is having a hard go at it --- especially so early on --- it might be hard for her to hear ----- "you should be thankful"...
When in reality --- going through it at all ---- for ANY amount of time is awful. And no one should be thankful about it... LOL! At least ya ain't hearin' me thanking anything about having to take the TX... LOL! Glad I did it --- but wouldn't do it again --- and thank goodness I got lucky with SVR...
I dunno if she's having the same kind of reactions that I did --- but if she is --- it's hard to hear things like that...
And on this TX ---- as we all know --- it is SO VERY EASY to let our emotions get out of hand.
I don't know if that made ANY kind of sense... But my brain was trying to read the answers to everything here --- and trying to make peace.
No one should have to TX --- it's horrible.
Some folks can manage it well..
While others cannot.
NO ONE IS SO LUCKY TO BE DOING THIS TX --- not now - not ever.
BUT --- it is what it is...
And I do love each and every one of you. OK?
So no more harsh words...
Don't try to infer things from what others write --- and if someone gets upset about something ---- just take a step back and relax... EVERYTHING WILL BE OK...
ALRIGHT?
It will be ok - one way or another...
We are all a big family here.
---------------------------------
The way you describe your treatment experience here is very similar to the way I would describe mine.
And please don't take this as a criticism, but why don't you talk more about your treatment experience in threads where people are asking if they should treat or not?
Many postulate that side effects are over-estimated here because only the "whiners" talk up, i.e. people don't talk about what an easy time they're having. My opinion is that many like you, who have had difficult tx experiences, don't talk up in certain threads because you don't want to discourage people from treatment.
My take is that people should get all the information we can give them. It's an important decision whether to treat or not, so there should be no sugar coating.
So speak up more girl, I know you're not the bashful type ;)
-- Jim
And that's just from the monkey sex.
Treatment was no walk in the park either, I imagine
We better ask dr D what he thinks about doing monkeysex while on treatment.
Even if rumors says hes done it twice him self, I´m not sure he will recomend it .
Extended tx with monkey sex in the formula I´m almost sure will be out of the question.
But as said before we better ask dr D.
PS dont get lost in the forests in Alaska.
I´ve heard that Matt Chin no longer is juicing and therefore is getting rid of his monkey suit selling it at Ebay.
Think hes about the same size as Jenna, just a tip if you wanna try something different jim.
I am glad you mentioned this...it gives me an opening to say something that has bothered me as someone who is tolerating treatment very well. There are three reasons that I don't feel comfortable telling many how "doable" tx has been for me(so far, lol!)
First-so many people that I care deeply about are having a tough time treating - it just doesn't seem right to talk about my relative walk in the park
Second-I feel part of the reason I am doing well is because of the advice I was given from these very same people. Not that I am fooling myself that I have any control in this journey-in fact my worst sx are things I cannot control-anemia and neutropenia. And I know that just because these first 9 weeks have been kind..that can change in a moment.
Third-I know that hearing balanced information is important-but look at me. Minimal liver damage (1/0) in a clinical trial with all the risks/rewards that carries and having a relatively easy time of it. I struggle with sharing my experience because I don't want to lead anyone down this path and have it turn out bad for them.
So, I guess in a round about way-that is my way of asking you if you think I should share the my perspective more as well or if it would somehow be misleading???
I know of many people who refuse to treat as they have heard that tx is worse than the illness. In some cases it is, in some cases it's not. There is also an stereotype out there that these types of forums and support groups are filled with negativity which is also detrimental to those who might be trying to decide whether to treat or not as there is so much good information here that can actually help the treatment experience for the better.
Personally, I have good days and bad days, some are horrific, some are ok. I manage to keep working mostly. I also tend not to share when I'm feeling good, I also minimize what I am feeling because I compare it to what others are experiencing and I think that negatively impacts on my treatment because it's not about who has the worst or most difficult sx, it is relative for each individual and part of getting through this is accepting where we are with it. We already feel bad, why feel bad about feeling OK?!
I also believe in the power of the mind and how we can influence our experience by keeping a positive and open mind. Sometimes too much fear makes us paralyzed and let's face it, our perceptions can get pretty messed up with these drugs without adding more fear to the picture.
I'm not saying we should be Pollyanna about it all, I believe in a multifaceted knowledge base, but I also think we need to celebrate the good days to tide us over the difficult days.
I look forward to hearing some positive experiences!!
There will be about 70% of the folks who have the (and I quote) "FLU" symptoms.... and nothing much more.
Then about 20% who have a rough time...
And about 5% who have a seriously rough road... and tough it out - thinking this is normal...
And about 4.999999% who must quit.
And about .00001 who die.
I pulled those stats outta my monkey suit trap door *grin*... But that's kind of the idea that I'm working with --- those basic percentages... From the literature that I've read - from the doctors I've talked to --- and from watching the boards --- reading the net and listening to the people here who have or are treating.
So I count myself in the 5% range... And I think that is too small of a number to "warn" people about.
I do tell them that each person is affected differently.
And I am of the belief that the only peeps who pop up on the board are usually those who are having problems or have some questions --- or are doing research ahead of time.
I just want to go on record - folks who do 72 weeks are my heroes --- and those who did 72 weeks and were in MY (LOL) 5% range --- are super heroes...
No one's TX is any less hard than anyone else's...
ALL TX stinks... But I got SVR...
And there is nothing that can measure that pure luck. And I WISH everyone to get SVR --- and I'm feeling hopeful about the new Vertex and other drugs on the pipeline...
There is a LOT of HOPE coming out - and I'm very thankful that it's starting to look good on the horizon for a lot of people and the NON responders.
Hugs youse guys --- Remember that every single one of you is special...
At least to me. No matter our differences --- no matter our different opinions - each one of you on this board is a special - fantastic person.
Many hugs!
Meki
everytime you hit it out of the ballpark with words of wisdom, I print it out and tape it to my bathroom mirror.
At least that is how it started......
now my bathroom is wallpapered-mirror and all--with Meki's words of wisdom!
LOL!
So glad you are back.
Isobella
Anyway Marcia I appreciate your note and thoughts and I understand.
I am routing for you and us all. I think a drop in VL no matter what is a huge accomplishment. We should take every drop, embrace it and never let go of hope!
Keeping positive is the key and remembering we are all not cut from the same cloth or geno type! As others have said. Each journey will be different,some easier than others,some unbearable, none of us know till the journey begins! It takes courage to start, our bodies will do the rest to let us know if we can continue or not. It is a very personal choice which should be made with "good""reliable" medical supervision. As we all know finding that can be more challenging than the tx LOL!
I get my 12 week VL this week and as I said I am scared to death of the results because of the lower dose, which some thought I should not do, but I didn't have a choice,I will just have to deal with the results.
I hope I have good news to share, and hope I keep hearing good news from everyone here on this wild journey we share! I believe in the end it will make us stronger. And I would imagine those who have finished the journey and are SVR and have their lives back would agree! And they appreciate each good day just that much more than before tx. Just my opinion.
Hang in there gang!
Thanks again Marcia.
D.T
Keep us posted-
Isobella