Aa
My genotype
I got more lab results.. My Genotype is 1b with hcv quantitation 847,000. SGOT 44, SGPT 54 and I was also positvie for Hept which is the first time the Heptitis A came back positive. My Sonogram showed a fattie liver no masses I see the Hepatologist tomorrow. At which time I will be getting my appointment for the liver biopsy. What do I need to ask tomorrow. Everything that I have read states I should have got vac for the hept a when I was diagnosed with hept c. I did not. Can I still get the vac now?
So sorry to hijack this thread, just wanted to put myself out here in Banner Letters, hey, CTOAN, I go to a few different boards and I also research the new drugs relatively thoroughly, not to the extent that you do though....and I for one am extremely grateful for all the research you do and how you keep us all posted on the new findings...hey, don't go!!! and if you do, please let us know where you land, because I think youre one of the best sources of information I've come accross. Those of us who are very interested in these new drugs need you around!!!!
For me, this board is very informative with many intelligent and informed people, but I do admit it's a bit of anomaly in the hep c board community in that it isn't heavily moderated. That's why, perhaps, many enjoy coming here... though it can be the wild west here. Usually, on other boards, there are more than a few moderators who might come on and send you and email or two if they think you might be causing unnecessary trouble, or unwelcoming to newbies, whatever. This place is more of a no-holds-barred venue where the members will often try to moderate each other in the hopes of gaining some kind of balance and equanimity...and often what ensues is anything but. I've also noticed that some people just have a sharp tone in their postings, perhaps English is their second language (I know a few like this and many people don't know this is the case) or that's just the way they communicate for whatever reason. We both know that posting on the net has it's drawbacks in that we can't hear voice inflection or see facial expressions.
Whatever you do, please don't go and if you do, please let us know where you land. I for one would very much like to benefit from all your hard work. (Hope that doesn't sound to user-friendly, wink wink.)
For me, this board is very informative with many intelligent and informed people, but I do admit it's a bit of anomaly in the hep c board community in that it isn't heavily moderated. That's why, perhaps, many enjoy coming here... though it can be the wild west here. Usually, on other boards, there are more than a few moderators who might come on and send you and email or two if they think you might be causing unnecessary trouble, or unwelcoming to newbies, whatever. This place is more of a no-holds-barred venue where the members will often try to moderate each other in the hopes of gaining some kind of balance and equanimity...and often what ensues is anything but. I've also noticed that some people just have a sharp tone in their postings, perhaps English is their second language (I know a few like this and many people don't know this is the case) or that's just the way they communicate for whatever reason. We both know that posting on the net has it's drawbacks in that we can't hear voice inflection or see facial expressions.
Whatever you do, please don't go and if you do, please let us know where you land. I for one would very much like to benefit from all your hard work. (Hope that doesn't sound to user-friendly, wink wink.)
tnguy and others had made a nice list for another member that had similar questions as you.
HEre is the list:
"you should discuss with your doctor about seeing an eye doctor before treatment as well. Some people develop optic nerve damage (low chances of about 1-3%) which usually is not permanent but the eye doctor should see you before treatment to establish a "baseline" of what your optic nerves look like to compare with how they look as you progress on treatment. I had eye concerns before treatment and have not developed any problems but get checked every 3 months for insurance. As Michaelt suggested read as much as you can, educate yourself about potential sides. Those that you concerned me the most are the ones that I asked my doctor about. Also critical in my opinion is WHAT the doctor will do if your red and white cells drop too low....and IF he is willing to check your thyroid on a regular basis....there are many ways your doctor can help you with your "quality of life" as you proceed through this journey of fighting this virus. My best to you and don't worry too much....all these sides can be very frightening but my personal experience has been my fears of the sides before were greater than what is presently happening at week 18/48...not a walk in the park but it is doable. My best to you and keep us posted how it goes with your doctor.
Scott
I encourage folks to discuss those things that might come up during treatment just to put 'em on the table, get assurances from the doc that she is cognizant of 'em and is prepared to detect and treat if needed.
Treatment induced depression.
How will we address my pain/discomfort if I have any?
What will we do if treatment causes me to become anemic?
How have you dealt with reduced Quality of Life issues for people on treatment?
Can you help me if I have sleep problems caused by treatment?
etc.
Some of these things can be discussed in general terms, but some people will have special concerns due to the condition of their liver, other health issues, current medications, etc.
Read through all the horrible and nasty potential side-effects of treatment and discuss the common ones and those that scare the p*ss out of you. If the doc doesn't bring it up, discuss the possibility of thyroid problems and how it will be monitored.
That's what comes to mind, for now. God bless!
HEre is the list:
"you should discuss with your doctor about seeing an eye doctor before treatment as well. Some people develop optic nerve damage (low chances of about 1-3%) which usually is not permanent but the eye doctor should see you before treatment to establish a "baseline" of what your optic nerves look like to compare with how they look as you progress on treatment. I had eye concerns before treatment and have not developed any problems but get checked every 3 months for insurance. As Michaelt suggested read as much as you can, educate yourself about potential sides. Those that you concerned me the most are the ones that I asked my doctor about. Also critical in my opinion is WHAT the doctor will do if your red and white cells drop too low....and IF he is willing to check your thyroid on a regular basis....there are many ways your doctor can help you with your "quality of life" as you proceed through this journey of fighting this virus. My best to you and don't worry too much....all these sides can be very frightening but my personal experience has been my fears of the sides before were greater than what is presently happening at week 18/48...not a walk in the park but it is doable. My best to you and keep us posted how it goes with your doctor.
Scott
I encourage folks to discuss those things that might come up during treatment just to put 'em on the table, get assurances from the doc that she is cognizant of 'em and is prepared to detect and treat if needed.
Treatment induced depression.
How will we address my pain/discomfort if I have any?
What will we do if treatment causes me to become anemic?
How have you dealt with reduced Quality of Life issues for people on treatment?
Can you help me if I have sleep problems caused by treatment?
etc.
Some of these things can be discussed in general terms, but some people will have special concerns due to the condition of their liver, other health issues, current medications, etc.
Read through all the horrible and nasty potential side-effects of treatment and discuss the common ones and those that scare the p*ss out of you. If the doc doesn't bring it up, discuss the possibility of thyroid problems and how it will be monitored.
That's what comes to mind, for now. God bless!
Thank you, I appreciate the sentiments. It is hard not to post, because of the desire to help/contribute to those in need. I have always appreciated those who have responded to me. I think there is a better understanding of things now.
Karen has asked me to leave this board and all the hepatitis stuff behind me. She wants me back and I understand perfectly well why she feels that way. She has been through my transplant and 3.5 years of interferon/ribavirin and she wants to get on like normal now that I am SVR since June 2004. I can't seem to do that because I feel the need to stay in touch with the community and just maybe I can help someone along the way. That's the good side of this terrible disease. It fosters compassion. So I, for one, am glad you've decided to stick around and help us all. Thanks. Mike
Hi, don't think I've ever communicated with you, but I'm glad you decided to, at least, stick your head once in awhile, I enjoy your postings. Yeah, I think it's prob a good idea to take a vacation now and then from all things hep c related ...if not it's surely a door to madness...he he he. So glad that you are doing well with your tp, I'm always so relieved when I hear of the few friends I have who have been transplanted feeling so much better and healthier...good luck to you!
Thanks for the kind words. I enjoy reading your posts too and it's nice to finally talk to you after all this time. Yes, I am doing well - my numbers are beautiful AST 22, ALT 16, GGT 13 10/27/2005. My Heptimax as of this date was clear. I have so much to be thankful for. Be well. Mike
Please make sure that you bring up the Anemia/Hemoglobin issue with your doctor as Cuteus said (and ALL her points were greatly valid).
Personally the only thing so far that almost beat me into submission and forced me to quit was the extreme drop in hgb - I simply could not EVER have imagined that it could be so tremendously and horribly bad.
Now that I am on Epogen twice a week...I able to continue living in an offbeat way but...able to do so. Before I kept fainting (which is painful believe it or not it REALLY hurts before you go down) and was not able to walk more than a few feet, could not breathe, had such bad tinnitus.........it was DREADFUL.
Please make sure to talk to the doc about that - it might save your treatment.
Best of luck
Personally the only thing so far that almost beat me into submission and forced me to quit was the extreme drop in hgb - I simply could not EVER have imagined that it could be so tremendously and horribly bad.
Now that I am on Epogen twice a week...I able to continue living in an offbeat way but...able to do so. Before I kept fainting (which is painful believe it or not it REALLY hurts before you go down) and was not able to walk more than a few feet, could not breathe, had such bad tinnitus.........it was DREADFUL.
Please make sure to talk to the doc about that - it might save your treatment.
Best of luck
Mike,,,,That is so great about your enzymes and heptimax. I agree that it does make you step back,,,,and be so thankful! Your wife sounds alot like my husband,,,,Same thing with him other day,,,asking if I was still tuning into medhelp and why? #1,,,I love to see the way more and more are clearing and of course if I can offer any kind of advice,,encouragement,,,That is what I will do also. So many were there for me as I'm sure you can relate. Right now,,,I'm helping 2 others going through tx personally and one of them in particular,,,Thanked me yesterday for being there and understanding while they get through the tx. Days like that,,,make it all worthwhile and maybe that is something that our spouses don't quite understand or maybe even feel after clearing,,,like you said,,,,get on with your life but that is a part of our life. Glad you are recovering from your motorcycle accident now and Karen is probably looking for a more relaxed year not relating to drs lol
Mike - I also understand Karen. I guess we all need that balance. The truth is, life is never going to be exactly the same once we have had hep c and that is just part of the total journey. Like it or not, we become a part of this group and I am sure it will be hard to cut loose in the end.
No nick - I posted to you on some other thread, hoping you would continue to post. Your research on hep c and muscle problems is invaluable. Thank you
Honey -- you too - glad to see you. I understand your hubby too but I am so glad you read and post with your encouraging way
foreseegood -- you too have provided much knowledge here. In actuality, it seems those still waiting to treat are doing the most research - like you and no nick.
Cutie you too, while I am at it. THanks for continuing here. YOu have provided Tyree with the needed info. You were the first to post to me, in May, and I will always remember that
Kathy
No nick - I posted to you on some other thread, hoping you would continue to post. Your research on hep c and muscle problems is invaluable. Thank you
Honey -- you too - glad to see you. I understand your hubby too but I am so glad you read and post with your encouraging way
foreseegood -- you too have provided much knowledge here. In actuality, it seems those still waiting to treat are doing the most research - like you and no nick.
Cutie you too, while I am at it. THanks for continuing here. YOu have provided Tyree with the needed info. You were the first to post to me, in May, and I will always remember that
Kathy
Hi- Went to the liver doc yesterday--- i am 49 y o. I had a biospy 18 months ago- liver was 0-1 . Viral load 289,000. Doc said it was my choice to go on the meds. I am geno 1- so less than 50% chance . i feel fine. Guess i'll wait.
You know, sometimes I think that having a potentially deadly disease and bonding with others who have it is a little like the bonding that goes on in the military...the comrades-in-arms type of thing that happens when you share a highly stressful situation. People who do not have a disease like this and are healthy just can't imagine what it's like, I know I sure didn't. Sometimes when I listen to what my "healthy" friends complain and freak out about...sheesh!!!!I try to empathize because I once was one of those people...feeling like my world was going to end because I might be fired from a job or something like that. Oh...would I trade those problems now!
And then, I'm not even on treatment so I haven't even delved into the worst of it. And then the people who don't even respond or relapse, they are further tested. And even more extraordinary... you have people like our friend Mike Simon, who have undergone transplant. I realize going through all these things brings out the best and worst out of all of us, but I am truly amazed at the bravery and character I witness at these boards...And yeah, we don't always see people at their best...as we all know. It's not always like the television shows where someone who is snotty gets a deadly disease and then they suddenly turn into a an angel of a human being. Everyone reacts differently to illness.
But I think it's these things that bond us, even after we have fortunately cleared and really have no need to come here...except to check in and hopefully help someone else less fortunate. The only positives I get from this disease is the fact that I can witness this bravery on a daily basis, and hopefully incorporate some of these lessons into my own life. I hope it's made me a much better person, I know it's made me more compassionate with myself and others. I'm now not so apt to take my pleasures and joys for granted as before. So yeah, there are "some" positives. Still and all, if anyone wants to buy my disease....it's going really cheap!
And then, I'm not even on treatment so I haven't even delved into the worst of it. And then the people who don't even respond or relapse, they are further tested. And even more extraordinary... you have people like our friend Mike Simon, who have undergone transplant. I realize going through all these things brings out the best and worst out of all of us, but I am truly amazed at the bravery and character I witness at these boards...And yeah, we don't always see people at their best...as we all know. It's not always like the television shows where someone who is snotty gets a deadly disease and then they suddenly turn into a an angel of a human being. Everyone reacts differently to illness.
But I think it's these things that bond us, even after we have fortunately cleared and really have no need to come here...except to check in and hopefully help someone else less fortunate. The only positives I get from this disease is the fact that I can witness this bravery on a daily basis, and hopefully incorporate some of these lessons into my own life. I hope it's made me a much better person, I know it's made me more compassionate with myself and others. I'm now not so apt to take my pleasures and joys for granted as before. So yeah, there are "some" positives. Still and all, if anyone wants to buy my disease....it's going really cheap!
Thank you, I think I will stay around. You did hit on an important point as far as things go for me. Since I have not treated, and had been advised by my PCP to await the new PI's (this was before he even heard of 950) few years ago, I have spent this time researching everything I can. My background is science, so some people just want to know the bottom line, but I guess I like to see the math in between.
That looks to be about the best results you could have gotten. I am happy the numbers were good. Hopefully that means you have the time to wait.
It is good to know hcv has not damaged too much, isn't it?
keep an eye on possible extrahepatic conditions and, the SVR rates can be higher than 50% depending on pre tx factors and response to meds in the first months of tx. But, hopefully every thing will go smoothly for you.
keep an eye on possible extrahepatic conditions and, the SVR rates can be higher than 50% depending on pre tx factors and response to meds in the first months of tx. But, hopefully every thing will go smoothly for you.
Hi Honey. Are you the same Honey whose husband's birthday is June 3? I thought I remembered that and looked it up to see and the Honey was named "honey 15346" or some multi digit # like that. If you are the same honey we sure go back a long time. The wreck: I am doing rehab 3x per week and walking fairly well w/o crutches. It's funny, sort of - back when I was TXing or fighting rejection people would ask me how I felt and I'd say I have to see my labs then I'll let you know. Now I say I'll have to see my x-rays.
friole, you are absolutely correct-we will never be the same and that's okay as long as we get sort of healthy. I'll settle for that. I have met some of the finest people I've known as a result of HCV. There are some really brilliant and compassionate people here at MH. Mike
friole, you are absolutely correct-we will never be the same and that's okay as long as we get sort of healthy. I'll settle for that. I have met some of the finest people I've known as a result of HCV. There are some really brilliant and compassionate people here at MH. Mike
Hi everyone. I was diagnosed with Hep C approximately 10 years ago and have finally decided to take the big leap into treatment. I have an appointment with my Gastroenterologist on Friday and am sure I will have current blood studies done at that time. No matter what I have decided to go ahead with the treatment as I am petrified of the long term effects if I do not. I am so scared right now. So depressed and worried. All I know at this point is my Genotype is 1. I dont remember if that is the "better" of the Genotype as far as a cure rate or not. I have read so many of your threads and posts and I am very grateful all of you are here. It is such a relief to know I do not have to go through this alone. So can anyone let me know more about the Genotypes?
Thank you so much and I hope everyone is feeling well.
Jenn
Thank you so much and I hope everyone is feeling well.
Jenn
tyree, sounds like some good news and not so good news...
nice viral load and alt/ast is not horrible...but the genotype, fatty liver and the hep A are not good news...see if you can find info on these tonight so you are armed with plenty of questions about it tomarrow...i would start at janis' site for the info...i will give you the site below...
its very good that you have a hepatologist. it will be very important to do as he suggests...the combo of hep C and A is serious...make sure he knows his stuff...
he should be very aggressive in doing the right tx for you on both of those... he should offer you alot of testing through this and he should thouroughly watch you...this is not one for a laid back type dr...
be sure and get alot of info from him on how the two interact and what is the worse case senario, and the best way to treat...consitrate on getting your questions answered...have a lot of them ready before you go in...let him tell you what is going on...
yes you should have had a vaccination...i read that even though it is highly suggested alot of folks don't vaccinate... the dr can tell you if the vaccine will do some good now...
i'm sure you will get an earfull if you ask questions...bring a tape recorder so you can go over it after you get out of there...that's what i wish i would have done on my first visit to gather info...just an idea. you can conceal it in a bag if you think he will be intimidated...
come back and educate us on how the two interact...alot of us don't have much info on having hep a with hep c...
i pray you will get all the help you need and can get rid of both virus' before damage occures...
GOD'S BLESSINGS TO YOU TYREE...
http://janis7hepc.com/interviews_and_articles.htm#The%20following
*************************************************************
MIKE,
i understand karens concerns for you and your family...i would take her seriously if i were you, but i would try to see if she can reach some sort of compromise and agree to perhaps even a few hours a week studying or visiting us...you perhaps still can use some support here, and i know we all really care about you and love to hear from you...you know just a couple hours a week to hang out with us...i hope you can work out some sane idea...i agree that too much hep c study etc...could be keeping you from enjoying your wonderful SVR and quality family life...keep it all in balance...
your friend,
sandi
nice viral load and alt/ast is not horrible...but the genotype, fatty liver and the hep A are not good news...see if you can find info on these tonight so you are armed with plenty of questions about it tomarrow...i would start at janis' site for the info...i will give you the site below...
its very good that you have a hepatologist. it will be very important to do as he suggests...the combo of hep C and A is serious...make sure he knows his stuff...
he should be very aggressive in doing the right tx for you on both of those... he should offer you alot of testing through this and he should thouroughly watch you...this is not one for a laid back type dr...
be sure and get alot of info from him on how the two interact and what is the worse case senario, and the best way to treat...consitrate on getting your questions answered...have a lot of them ready before you go in...let him tell you what is going on...
yes you should have had a vaccination...i read that even though it is highly suggested alot of folks don't vaccinate... the dr can tell you if the vaccine will do some good now...
i'm sure you will get an earfull if you ask questions...bring a tape recorder so you can go over it after you get out of there...that's what i wish i would have done on my first visit to gather info...just an idea. you can conceal it in a bag if you think he will be intimidated...
come back and educate us on how the two interact...alot of us don't have much info on having hep a with hep c...
i pray you will get all the help you need and can get rid of both virus' before damage occures...
GOD'S BLESSINGS TO YOU TYREE...
http://janis7hepc.com/interviews_and_articles.htm#The%20following
*************************************************************
MIKE,
i understand karens concerns for you and your family...i would take her seriously if i were you, but i would try to see if she can reach some sort of compromise and agree to perhaps even a few hours a week studying or visiting us...you perhaps still can use some support here, and i know we all really care about you and love to hear from you...you know just a couple hours a week to hang out with us...i hope you can work out some sane idea...i agree that too much hep c study etc...could be keeping you from enjoying your wonderful SVR and quality family life...keep it all in balance...
your friend,
sandi
What are others opinions on waiting to do treatment. I am only 29 and my vl is @ 52,000. I am also Genotype 1b and my liver biopsy came back as grade 1 stage 0, no cirrhosis or fibrosis of the liver yet. My doctor also said that it was my decision to start treatment and i have never felt symptoms; i feel fine everyday. My worry is with having kids in the future and more responsibilities that if i waited and then had to do treatment, i would have more to deal with than i do in my life right now. I have also read that your percentage goes up for viral response if you meet certain criteria. One of the criteria is being under 35 years of age, which i am. Also, i kind of feel that since i am still young, my body could handle more now than it could at a later age. My life is very positive and i have very little to stress about.
Anyone else have any input on making this decision..... I know it is mine to make but i am curious of others opinions :)
Thanks, Shannon
Anyone else have any input on making this decision..... I know it is mine to make but i am curious of others opinions :)
Thanks, Shannon
Thanks for thinking about Karen and me but I can assure you she's cool with me participating here and elsewhere in the HCV community. We talked about it some and I referenced the many breast cancer survivors who continue to speak out and counsel victims. She gets it and only wants me to be happy. We'll go on vacation to Vegas or some tropical island and that will make her happy and content. I think she's so beautiful that I'll just watch her sleep for a long time so she knows she's loved and isn't that what we all want once we achieve a modicum of health? That's all I want or need. Oh yea, a little spice is nice too. Mike
Type 1 is a tough genotype. Types 1 and 4 are tougest to treat successfully whereas 2 and 3 are the easiest. 1s can reach undetectable and stay that way about 50% of the time so don't get too discouraged. Good luck with the TX. Mike
Mike...thank you for letting me know. Figures it would be one of the toughest right?...damn.....I feel like I am falling apart and I haven't even started treatment yet....it has taken ten long years to make this decision...it seems so easy to just forget about it...but I know that is the wrong thing....You know what made me finally decide to go ahead with the treatment? I was in Center City Philadelphia and saw a billboard that said something like if you had hep c on your face instead of your liver would you do something about it then? and there were lesions all over this guys face.....the Truth is hard to swallow sometimes huh?....takes something like that to make you realize just cause you cant see it doesnt mean it isnt killing you.
God Bless All of You...
Jenn
God Bless All of You...
Jenn
You are in good shape if you decide to wait. One positive factor towards waiting is that it appears that some new drugs may be just around the corner - maybe 3 or 4 years away if I am seeing things right. There are exciting prospects for Vertex drug VX 950 which is a protease inhibitor(pi) so now is maybe the most promising time to wait since I've been involved in this stuff. On the other hand it would be nice to get rid of the virus now but the TX can be hard to tolerate. But you said it - you have things in your favor if you decide to treat. You're young and have a low VL and no fibrosis. But you're type 1 which is a tough type to treat. It's a toss up. I could tell you what I'd do but it isn't me who's got to decide. It's a very personal thing - this decision to treat or not. Just hang out here and ask for input and you'll make the right decision. Good luck Shannon. Mike
Hang in there Jennifer. Do not allow yourself to fall apart. A lot of people here can help you through this thing so relax a little. We've been where you are and a whole bunch of us have gotten to the other side of this hep c thing. When you get ready to find a doctor ask here what you should make sure about before treating with the doc. Things like making sure you can get Procrit if your hemoglobin drops below 10 and neupogen if your white blood cells get too low or neutrophils get low. Some docs will supplement and some will reduce doses. Most of us here believe strongly in supplementing and not reducing doses and most of the literature would back us up on that issue. So get informed and stay strong and you'll be okay. Stay here and don't be afraid to ask about anything you're not sure of. Good luck. Mike
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