Ping: Paul & Susie Quill, about "Re: friday or saturday… when to start?"
Question:
news: I called a private lab. for genotype test. I’ll be there and give a blood sample tomorrow morning. Guys, hope they can read it this time… I also learned that they have a very sensitive HCV-rna test (can count down to 5 copies). This can be useful in the future. Tomorrow, in the evening, I’ll have my first shot. On monday I’ll call my doc to tell her how my week-end was. I’m going to ask her for a biopsy so that I’ll have an idea of how my liver was at the moment I started tx. It’s important for me to say that I got to these decisions thanks to your advice. Thank you. keep in touch, jeeb.
Response:
On Fri, 22 Oct 2004 14:54:55 +0200, "ghibeluno" <ghibelno___NOSPAMMEPLEASE…@yahoo.it>, in message ID <2tse5nF24an7…@uni-berlin.de>, in the newsgroup – Hide quoted text — Show quoted text -alt.support.hepatitis-c wrote: >Guys, hope they can read it this time… >I also learned that they have a very sensitive HCV-rna test (can count down >to 5 copies). This can be useful in the future. >Tomorrow, in the evening, I’ll have my first shot. >On monday I’ll call my doc to tell her how my week-end was. I’m going to ask >her for a biopsy so that I’ll have an idea of how my liver was at the moment >I started tx. >It’s important for me to say that I got to these decisions thanks to your >advice. >Thank you. >keep in touch, >jeeb.
I’m glad to hear that you are doing these things. Please be aware that the blood can thin quite quickly after starting tx – though they do check for this before doing invasive work anyway. (My platelets dropped from 249 to 135 in 4 weeks). Obviously it’s your choice to make and I realise that people usually want to get tx started and finished as soon as possible. Personally, if it were my body (and it isn’t because it’s yours) :-) , I would delay starting tx until after the biopsy. Hey jeeb. In July 2003, I didn’t even know which side my liver was on LOL. I’m glad my doctor did though. — Paul Use the reply by email facility in your newsreader to send email
Response:
> Hey jeeb. In July 2003, I didn’t even know which side my liver was on > LOL. I’m glad my doctor did though.
ahaha… I’ve instead have always known and this wasn’t good, me being a super-paranoid one… Anyway you seem to know a lot, now. Good for you. About me: I’ll start tomorrow. Can’t imagine how to chenge my mind. Next week or the following one, I’m quite determined to have a biopsy. I’ll check my platlets before. Thanks Paul, jeeb.
Response:
Hi, I’m still using Google and a new thread as the news server I’m using at the moment does not accept posting. Paul: I’ve applied for an account to news.individual.net, thanks for your advice, I’ll use it as soon as they reply 
Let me introduce myself, as it seems both of you couldn’t read my first post. The nickname I’m using means nothing. It’s just some letters put together to recall to me a person that I really care for, my son. I’m male, I’m 30 and I come from Italy. For this reason you should try to forgive me for my English, I’ve been living in England for a while, but it was quite a long time ago I’m dealing with what you call the dragon. I had my first examinations about 8 years ago, when I ended my addiction to drugs. The result was "anti-HCV positive" but with no need for any treatment as serum ALT results where ok and HCV-RNA by PCR tested negative. I’ve been living this situation ("watchful waiting") for 7 years. All the doctors told me to do was trying not to drink alchol and keep on watching at my serum ALT levels. Which were normal until the beginning of the current year. Now I do test positive for serum HCV-RNA. Doctors decided to ask me whether I’d like to start the current standard treatment (PEG-Interferon+Riba). About your replies… Paul: I do agree with you. I’ve asked my doctor (who’s also a friend) if there’s another way to determine the genotype. She answered no. She also said that all the factors show that my genotype sholdn’t be of type 1, but there’s no way to be sure. I’ve told her exactly what you told me (about the TX duration and related fears) and, again, she said that I’ll have HCV rna examinations after 4 weeks instead of 12, this being negative would confirm her suspect that genotype isn’t 1. In this case I’d do an half-way: 8 months probably… That’s all. About the biopsy: she ASKED me if I wanted to have one because, as far as she was concerned, there was no need in my case to do that because there are a lot of factors (infection history, ALT levels, viral load, ultrasound examinations) that clearly show that my liver shouldn’t be so damaged (a kind of low inflamation). Finally, wish me good luck because I’m due to start, tomorrow or, at least, on saturday. Susie Quill: thanks for your words. I’ll try to start on saturday and see how it is. Doc told me that if I can’t stand it I can anticipate shot on friday after some weeks. Keep in touch, ghibelno
Response:
Just had to comment on the Subject line… I read "Ping Pong & Susie Quill," thought, "helluva name for a band."
Response:
> Just had to comment on the Subject line… > I read "Ping Pong & Susie Quill," thought, "helluva name for a band."
ahahah 
mmmm… "helluva", "band"… it reminds me somet… oh yes: ".. it’s a helluva start, it could be made into a monster, if we all pull together as a team.." (Pink Floyd, Have a cigar)
Response:
On 21 Oct 2004 07:06:54 -0700, ghibe…@yahoo.it (ghibeluno), in message ID <95ce32b7.0410210606.6f558…@posting.google.com>, in the newsgroup alt.support.hepatitis-c wrote: >Paul: I do agree with you. I’ve asked my doctor (who’s also a friend) >if there’s another way to determine the genotype. She answered no. >She also said that all the factors show that my genotype sholdn’t be >of type 1, but there’s no way to be sure. I’ve told her exactly what >you told me (about the TX duration and related fears) and, again, she >said that I’ll have HCV rna examinations after 4 weeks instead of 12, >this being negative would confirm her suspect that genotype isn’t 1. >In this case I’d do an half-way: 8 months probably…
Your doctor may be your friend. To help ensure that you remain friends with her, maybe you should be treated by someone else as friendships and treatment for potentially life threatening medical problems are not good things to mix IMO. The virus being undetectable after 4 weeks is not an indicator of genotype – especially from such a low starting viral load. It’s fair to say that genotypes 2 and 3 are easier to clear but, with such a very low viral load, genotype 1 could be clear by week 4 as well. Although an early clearance is desirable and probable whatever the genotype, the issue is about staying clear both on tx and afterwards. I am concerned that you may be clear by week 4 with a genotype 1 and end up stopping the treatment too early (before 48 weeks) and then the virus returns. It may well be that, even with genotype 1, 24 – 36 weeks would be enough with very low viral load but I wouldn’t risk it myself. I had an ultrasound too that revealed no problem. Maybe I am being over cautious because I watched my friend die from this disease last year – while he was on treatment. Remember, this disease is a potential killer (though it takes a long time) and the treatment drugs can have very severe effects on and body (sometimes permanent) and mind. No disrespect intended to your doctor and friend but she has probably never done this treatment. >That’s all. >About the biopsy: she ASKED me if I wanted to have one because, as far >as she was concerned, there was no need in my case to do that because >there are a lot of factors (infection history, ALT levels, viral load, >ultrasound examinations) that clearly show that my liver shouldn’t be >so damaged (a kind of low inflamation).
I will tell you here of my own experience. My ALT and other bloodwork was normal or so close to normal that it wasn’t relevant, but my biopsy revealed mid range damage. This is quite a common thing to happen because the liver has a lot of spare capacity and blood tests often do not reveal a problem until there is a lot of damage. My viral load was also extremely low (91,000) as a million or more is quite usual but I had damage. Viral load is not a guide to amount of liver damage. Also bear in mind that viral load can fluctuate a lot and the tests we have are only a snapshot. There is also another issue about whether or not to have a biopsy. None of us like to feel that the treatment will not work for us. However, for many people it doesn’t. If your treatment doesn’t work and you do not have a biopsy before starting this treatment, you may well need biopsies every few years to see how fast the disease is progressing until another treatment comes along. If you do not have a biopsy now or soon, it will be more difficult to know this. A biopsy after starting treatment is ill advised because the treatment drugs thin the blood. >Finally, wish me good luck because I’m due to start, tomorrow or, at >least, on saturday.
I do wish you good luck. I believe that you will need it because, although your doctor clearly has your best interests at heart, I don’t believe that she is giving you the best advice. Yes. I know she has letters after her name and qualifications and I have nothing. I am just text on a piece of software. On a brighter note, you will probably be OK doing it the way your doctor wishes you to. I’m just trying to help you increase your chances of success. — Paul Use the reply by email facility in your newsreader to send email
Response:
"ghibeluno" <ghibe…@yahoo.it> wrote in message
news:95ce32b7.0410210606.6f558d23@posting.google.com… – Hide quoted text — Show quoted text -> Hi, > I’m still using Google and a new thread as the news server I’m using > at the moment does not accept posting. > Paul: I’ve applied for an account to news.individual.net, thanks for > your advice, I’ll use it as soon as they reply > Let me introduce myself, as it seems both of you couldn’t read my > first post. > The nickname I’m using means nothing. It’s just some letters put > together to > recall to me a person that I really care for, my son. > I’m male, I’m 30 and I come from Italy. > For this reason you should try to forgive me for my English, I’ve been > living in England for a while, but it was quite a long time ago > I’m dealing with what you call the dragon. > I had my first examinations about 8 years ago, when I ended my > addiction to > drugs. > The result was "anti-HCV positive" but with no need for any treatment > as > serum ALT results where ok and HCV-RNA by PCR tested negative. > I’ve been living this situation ("watchful waiting") for 7 years. > All the doctors told me to do was trying not to drink alchol and keep > on > watching at my serum ALT levels. > Which were normal until the beginning of the current year. > Now I do test positive for serum HCV-RNA. > Doctors decided to ask me whether I’d like to start the current > standard > treatment (PEG-Interferon+Riba). > About your replies… > Paul: I do agree with you. I’ve asked my doctor (who’s also a friend) > if there’s another way to determine the genotype. She answered no. > She also said that all the factors show that my genotype sholdn’t be > of type 1, but there’s no way to be sure. I’ve told her exactly what > you told me (about the TX duration and related fears) and, again, she > said that I’ll have HCV rna examinations after 4 weeks instead of 12, > this being negative would confirm her suspect that genotype isn’t 1. > In this case I’d do an half-way: 8 months probably… > That’s all. > About the biopsy: she ASKED me if I wanted to have one because, as far > as she was concerned, there was no need in my case to do that because > there are a lot of factors (infection history, ALT levels, viral load, > ultrasound examinations) that clearly show that my liver shouldn’t be > so damaged (a kind of low inflamation). > Finally, wish me good luck because I’m due to start, tomorrow or, at > least, on saturday. > Susie Quill: thanks for your words. I’ll try to start on saturday and > see how it is. Doc told me that if I can’t stand it I can anticipate > shot on friday after some weeks. > Keep in touch, > ghibelno
I had no symptoms of HCV when I was diagnosed. I had to have a HBV test for an over-seas job, and the doctor ordered a hepatitis panel. Shocked it came back positive. That was about 10 years ago. Alts were normal for years, only up occasionally and never more than 3 times normal, and frequently going back to normal or slightly above normal. My first biopsy a few years after dx. was normal, second one was normal, 3rd one was stage two. Went from normal to stage two in about 8 to 10 years. So normal alts doesn’t mean the disease isn’t progressing and causing damage. It really would be great if you could get a biopsy before starting. Otherwise, you may hear more stories like this and start worrying about it. It would be nice to know for sure that there isn’t any damage. Good idea on starting on Saturday and then maybe changing later. Doc. told me that changing it earlier or later by a day won’t make a difference. The treatment is like a bell curve. The amount in the blood goes up during the week, and then down and the next treatment overlaps the last amount still left in the blood. Did that make sense Later, Susie. —-== Posted via Newsfeeds.Com – Unlimited-Uncensored-Secure Usenet News==—- http://www.newsfeeds.com The #1 Newsgroup Service in the World! >100,000 Newsgroups —= East/West-Coast Server Farms – Total Privacy via Encryption =—
Response:
"Waterspider" <waterspi…@spamshine.net> wrote in message
news:10nh2368an62g1b@corp.supernews.com… > Just had to comment on the Subject line… > I read "Ping Pong & Susie Quill," thought, "helluva name for a band."
If I have to be the Susie Quill in the band, we’re in trouble. Can’t play a muscial instrument and can’t sing either. However, I like the sound of the name. LOL Susie Quill —-== Posted via Newsfeeds.Com – Unlimited-Uncensored-Secure Usenet News==—- http://www.newsfeeds.com The #1 Newsgroup Service in the World! >100,000 Newsgroups —= East/West-Coast Server Farms – Total Privacy via Encryption =—
Response:
Thanks Paul, I do really appreciate your words, I can feel you’re trying to help me, to let me follow the path you would follow. Thanks again. But I don’t know what to do, now. I think that I’ll try to follow your advice as far as I can. As a matter of fact, I’m *due* to start tomorrow. I’m not having any biopsy then, at least before starting treatment. You say (and I know this, too) that treatment drugs thin the blood, so a biopsy after starting is ill adviced. But I’ll try to ask my doctor to have one during the next two weeks or so, as soon as it’s possible. My blood will hopefully still be ok at that time, so that one issue (lack of biopsy) would be solved. As far as genotype. This really bothers me. I don’t know what to do. The only thing is to go and give a blood sample tomorrow morning if they get it (it’s saturday) and ask for genotype determination on it, paying for. Ok, seems an idea at least. Giving a phone call. cheers, jeeb
