Aa
COVERING ALL BASES IN BEING RECENTLY DIAGNOSED
Hello. Recently diagnosed 3 wks ago with Hep C. Can't believe what is happening to me! Just short of a miracle that I've recently met someone in an online creative writing course that had Hep C & has treated! We've both joined the course within this past month, (well 2 courses - (and pretty intense at that!). Distraught, & blurted it on the class interaction board - She suggested my mind may be put at ease by signing in here, as this place was a godsend during her treatment.
History: Went to GP with complaints of being continually tired & it turned out to be the Hep C virus! Besides talking with my classmate, I've dug around on the Net. The more I read the more concern I become. She also placed me in contact with a friend that has given me the abbreviations & common med terms used here, as well as suggested reading material & an email contact.
Last couple of wks: (A real life interrupter!) Contacted a liver specialist immediately in a nearby city & met with his staff (the specialist will see me after results are in -is that normal?). Ultrascan performed; blood tests for Genotype & Viral Load Count - (How long does it take for result or has it taken for some of you??). Lastly, had a liver biopsy Friday. Ouch! They said it was a breeze??? When can I expect those results?
(continued - only so many words allowed!!!)
History: Went to GP with complaints of being continually tired & it turned out to be the Hep C virus! Besides talking with my classmate, I've dug around on the Net. The more I read the more concern I become. She also placed me in contact with a friend that has given me the abbreviations & common med terms used here, as well as suggested reading material & an email contact.
Last couple of wks: (A real life interrupter!) Contacted a liver specialist immediately in a nearby city & met with his staff (the specialist will see me after results are in -is that normal?). Ultrascan performed; blood tests for Genotype & Viral Load Count - (How long does it take for result or has it taken for some of you??). Lastly, had a liver biopsy Friday. Ouch! They said it was a breeze??? When can I expect those results?
(continued - only so many words allowed!!!)
Thank you again, Najeen, for responding. It is a shame treatment didn't knock your bloody virus out. I am sorry.
Perhaps, like you, I will find myself with little damage waiting for something better. What was your biopsy results before your 48 week treatment? Was there more damage? Did you receive benefits from treatment? I've read whether one SVRs or not, they still reap benefits. There is much to read and my time off is ending in a couple of days.
How are you feeling now?
Perhaps, like you, I will find myself with little damage waiting for something better. What was your biopsy results before your 48 week treatment? Was there more damage? Did you receive benefits from treatment? I've read whether one SVRs or not, they still reap benefits. There is much to read and my time off is ending in a couple of days.
How are you feeling now?
I treated 48 weeks and relapsed. I am stage 1 and a 1b. Because I have little damage I am waiting for something better than the current treatment. I will get another biopsy in maybe two years.
Congratulations, ladybug, in approaching your halfway mark tomorrow! Yes, I'm seeing there are many variables. It is an amazing virus and I'm beginning to have a healthy respect for it. You're on your way to reclaiming your 'perfect' life!!! lol
Thank you again, najeen. From what I've seen there are some professionals in other areas on the entire MedHelp 'org' however no hepatologist. I will continue to keep in mind that this is patient-to-patient contact. I appreciate your concern and reminder, as that is something to keep in mind What are your statistics?
Thank you again, najeen. From what I've seen there are some professionals in other areas on the entire MedHelp 'org' however no hepatologist. I will continue to keep in mind that this is patient-to-patient contact. I appreciate your concern and reminder, as that is something to keep in mind What are your statistics?
Go to the Clincal Care Options, or ProjectsInKnowledge or over at the HIV/HCV site among others. The doctors are all there -- Dieterich, Jensen, Afdhal, Schiff and other world renowned hepatologists. Nothing stated here terribly new or original but simply what state of the art doctors are now saying. Opinions, when stated as such, are simply that, personal opinions. If your underlying message is don't trust what you hear on the internet, and to double check everything and anything with either professional sites or your own doctor, I cannot agree with you more. When it came to my own treatment decisions, I never took anything I read here -- or on any site for that matter -- as gospel, until I checked with multiple sources, including getting the opinion of my doctor. I also try not to re-post what others have said, unless I at least do a quick check on the source materials, but when I do am careful to mention it's a second hand source. Hopefully, everyone realizes that about half of what you read on sites like this is often factually incorrect, however that means the other half can be quite valuable if folks take the time to check which is which.
-- Jim
-- Jim
That means that when I'm quoting you, I'm factually correct 1/2 the time!:) Really meant to imply the 50% is me misquoting you!
Are you outside the states? Your manner of talking sounds so British.
As far as your trip to the liver specialist and not meeting him, I met with the specialist first, and then the bx and viral load (pcr) were ordered. I talked with him on the phone to get my results and initially decided to treat last Sept. I am geno 2, stage 1 grade 2. I was a little apphrensive about tx and kept putting it off because I didn't know how it would impact my perfect life! ;) After much discussion, thought, and prayer I started tx Dec 8. This Friday I will be 1/2 way thru. Tx effects everyone different. Some have horrible sides, dizzyness, no appetite, skin rashes, thyroid problem and drop in white blood cells, red blood cells or both. Some people breeze through with minimal sides. Some people work full time, some take a long leave of absence. There are so many variables, just like we have different strains, we have different liver damage and different responses to tx. I am working, and I have minimal sides. I am on procrit and felt pretty bad around week 4 but the procrit helped get my enegy back. Good luck with your very personal decision.
As far as your trip to the liver specialist and not meeting him, I met with the specialist first, and then the bx and viral load (pcr) were ordered. I talked with him on the phone to get my results and initially decided to treat last Sept. I am geno 2, stage 1 grade 2. I was a little apphrensive about tx and kept putting it off because I didn't know how it would impact my perfect life! ;) After much discussion, thought, and prayer I started tx Dec 8. This Friday I will be 1/2 way thru. Tx effects everyone different. Some have horrible sides, dizzyness, no appetite, skin rashes, thyroid problem and drop in white blood cells, red blood cells or both. Some people breeze through with minimal sides. Some people work full time, some take a long leave of absence. There are so many variables, just like we have different strains, we have different liver damage and different responses to tx. I am working, and I have minimal sides. I am on procrit and felt pretty bad around week 4 but the procrit helped get my enegy back. Good luck with your very personal decision.
Jimjm - Thank you for your diplomatic explanation! And for the compliment on my absorbing much in three weeks. Part of it is my course-mate relating her entire experience offline with me and referring me to quite a knowledgeable chap that has given me to-the-point reading assignments! LOL
I have so many questions, and will have more once answers to my labs arrive. Although my work week is 30 hours which does not sound so bad, it does require me to travel to places quite far from home at times. Even though I have seniority and put in for the warmer spots, traveling may be a concern. As a matter of fact, I'm only at my flat about sixty percent of the time. This certainly impacts one's life.
GoldenOak - Thank you for directions to that informative site, and also what you conveyed further up this thread
Najeen - Thank you for the reminder. I do see the patient-to-patient advisory. My friend wised me to this as well. Anything I see where people make note of, or quote their 'specialist', if it interests me, I do intend on copying it and obtaining thoughts from my specialist and/or his staff.
Aquarius - Thank you! This is exactly what I'm interested in. Labs dropping, I understand is normal with treatment but it is disheartening I'm sure. Laughing here, reading you 'don't work' but care for a 3 and 4 yr olds!! That's harder than most jobs! I am neither married nor do I have children. However, have a great admiration for those who do and can pull so much off in addition to all that and do this treatment - thta is looking more and more - - - -! Your words are appreciated and particularly the time you took typing because I know you're tired. Thank you. Breeze
These responses are impressive and appreciated. Thank you.
I have so many questions, and will have more once answers to my labs arrive. Although my work week is 30 hours which does not sound so bad, it does require me to travel to places quite far from home at times. Even though I have seniority and put in for the warmer spots, traveling may be a concern. As a matter of fact, I'm only at my flat about sixty percent of the time. This certainly impacts one's life.
GoldenOak - Thank you for directions to that informative site, and also what you conveyed further up this thread
Najeen - Thank you for the reminder. I do see the patient-to-patient advisory. My friend wised me to this as well. Anything I see where people make note of, or quote their 'specialist', if it interests me, I do intend on copying it and obtaining thoughts from my specialist and/or his staff.
Aquarius - Thank you! This is exactly what I'm interested in. Labs dropping, I understand is normal with treatment but it is disheartening I'm sure. Laughing here, reading you 'don't work' but care for a 3 and 4 yr olds!! That's harder than most jobs! I am neither married nor do I have children. However, have a great admiration for those who do and can pull so much off in addition to all that and do this treatment - thta is looking more and more - - - -! Your words are appreciated and particularly the time you took typing because I know you're tired. Thank you. Breeze
These responses are impressive and appreciated. Thank you.
i am 43 yrs old, female. i am slowing a bit and i just got my labwork back. things are dropping. i have a 3 and 4yr old to take care of, so i manage. i don't work tho. it is hard for me at times cuz i am active and go, go , go. i find myself sitting alot more, tho i do try to do as much as my body will let me. my whole family, kids ages 24, 18, 4, 3, know and a few friends know. i get support from all. they don't always understand as much as the people here do. i am more irritable, short tempered. it is not as bad as i thought it would be. i do get nausea occasionally but it comes in spurts lasting for 20-30 minutes, sometimes 1-3 times, but not every single day. i sleep ok. i get really tired going up a flight of stairs these days. cognitive skills maybe slightly off. not too much. family is all negative, including spouse. i amy have had this for 27 yrs, not sure. i found out when i was 4 months pregnant with my 3rd child. i breastfed and had vaginal deliveries. i don't think i really had too many sx from the disease itself, maybe a rash or two, here or there. maybe fatigue, hard to tell. the tx has made me suffer from some minimal sx, compared to others. i have a slight rash on hands and the others i mentioned before. the tx is doable, for me, at least to this point. i am glad i chose to tx. i have to run, but stay close to the forum, you will hear and learn alot. good luck!
I haven't see any hepatologists posting at Med Help. I've seen their patients posting their doctor's guesses. Can you point out these hepatologists please?
For starters see:
http://digestive.niddk.nih.gov/ddiseases/pubs/chronichepc/index.htm
http://digestive.niddk.nih.gov/ddiseases/pubs/chronichepc/index.htm
You sure have gotten up to speed in only 3 weeks, very impressive!
BREEZE: 'straighten me out' that there are 'quite a few' treating for a longer period (although not the norm-??-
SOC (standard treatment of care) is 48 weeks for geno 1's and 24 weeks for geno 2's and 3's. There are also what we term "shorter course" treatments for rapid viral responders (RVRs) but let's not get too complicated at this point. Extended treatment (more than 48 weeks for geno 1's and more than 24 weeks for geno 2's and 3's) is generally reserved for those that either failed to respond to a prior treatment, those that relapsed to prior treatment, or those that responded slowly to their first treatment. In the last case, extending treatment would be an alternative to stopping treatment altogether as is often done if you fail to be non-detectible (or two-log drop) at week 12. These protocols do vary and are changing. Occasionally, extended treatment is offered to harder to treat cases -- significant fibrosis, older age, etc -- even though they respond well to the drugs. That was my case, for example, so I treated 54 weeks based on my doctor's recommendation although two other liver specialists only suggested 48 week because of my RVR (I was non detectible at week 6). How long and hard you treat -- and the treatment decision itself -- is not a black and white issue, with reasonable minds often in disagreement, here and elsewhere. So the "tension" you sense in your post is quite real and often these threads get quite out of hand as reasonable (and sometimes not so reasonable :) ) minds disagree. My personal take on extended treatment is that it makes sense for those with significant liver damage because they have the most to lose under a relapse scenario. Those with little or no liver damage are therefore better off either not treating, or if they do treat, to either do SOC or a shorter course if warranted. If they respond slowly, then best to cut losses and stop rather than keep exposing themselves to the drugs. Again, just one school of thought, there are others.
BREEZE: shorter treating periods are possibly six or seven years away. That is a short time (!)
Yes, that is a short time, but actually the "six or seven years" is a very conservative estimate. Are you here in the States? I mention that because of your use of the word "Chaps" plus your relatively calm and collected demeanor :)
In any event -- and certainly no guarantees -- 2-3 years is the number many hepatologists are touting here, with "five years" about the most I've heard as an estimate. Regardless of how long it takes the shorter treatment protocols to come to market, you should be aware that one of the more promising drugs (VX-950 aka Telaprevir)is now in trial and in fact we will have significant SVR (cure) data flowing in all throughout 2007. For that reason, my opinion is that even for those that decide to treat, waiting a year to analyze the results of these trials makes infinite sense, assuming they do not have very advanced liver
disease.
Hopefully, Aquarius will chime in with more comments, but I'll just add that we have a character here called "Brian Fog" (brain fog) that is very common with treatment. Not that you'd necessarily be checkmating someone else's pawn, but it wouldn't surprise me :)
Lots of other stuff, including some informative web sites you might visit, but at this point, you might want to wait for all your test results to come in, so further research can be more focused, depending on genotype and liver damage, etc. You did mention a liver specialist -- hopefully, you're seeing -- or will see -- a hepatologist. They're usually located in your larger, teaching hospitals, and in general have far more up-to-date knowledge on HCV and treatment protocols than Gastroenterologists.
All the best,
-- Jim
BREEZE: 'straighten me out' that there are 'quite a few' treating for a longer period (although not the norm-??-
SOC (standard treatment of care) is 48 weeks for geno 1's and 24 weeks for geno 2's and 3's. There are also what we term "shorter course" treatments for rapid viral responders (RVRs) but let's not get too complicated at this point. Extended treatment (more than 48 weeks for geno 1's and more than 24 weeks for geno 2's and 3's) is generally reserved for those that either failed to respond to a prior treatment, those that relapsed to prior treatment, or those that responded slowly to their first treatment. In the last case, extending treatment would be an alternative to stopping treatment altogether as is often done if you fail to be non-detectible (or two-log drop) at week 12. These protocols do vary and are changing. Occasionally, extended treatment is offered to harder to treat cases -- significant fibrosis, older age, etc -- even though they respond well to the drugs. That was my case, for example, so I treated 54 weeks based on my doctor's recommendation although two other liver specialists only suggested 48 week because of my RVR (I was non detectible at week 6). How long and hard you treat -- and the treatment decision itself -- is not a black and white issue, with reasonable minds often in disagreement, here and elsewhere. So the "tension" you sense in your post is quite real and often these threads get quite out of hand as reasonable (and sometimes not so reasonable :) ) minds disagree. My personal take on extended treatment is that it makes sense for those with significant liver damage because they have the most to lose under a relapse scenario. Those with little or no liver damage are therefore better off either not treating, or if they do treat, to either do SOC or a shorter course if warranted. If they respond slowly, then best to cut losses and stop rather than keep exposing themselves to the drugs. Again, just one school of thought, there are others.
BREEZE: shorter treating periods are possibly six or seven years away. That is a short time (!)
Yes, that is a short time, but actually the "six or seven years" is a very conservative estimate. Are you here in the States? I mention that because of your use of the word "Chaps" plus your relatively calm and collected demeanor :)
In any event -- and certainly no guarantees -- 2-3 years is the number many hepatologists are touting here, with "five years" about the most I've heard as an estimate. Regardless of how long it takes the shorter treatment protocols to come to market, you should be aware that one of the more promising drugs (VX-950 aka Telaprevir)is now in trial and in fact we will have significant SVR (cure) data flowing in all throughout 2007. For that reason, my opinion is that even for those that decide to treat, waiting a year to analyze the results of these trials makes infinite sense, assuming they do not have very advanced liver
disease.
Hopefully, Aquarius will chime in with more comments, but I'll just add that we have a character here called "Brian Fog" (brain fog) that is very common with treatment. Not that you'd necessarily be checkmating someone else's pawn, but it wouldn't surprise me :)
Lots of other stuff, including some informative web sites you might visit, but at this point, you might want to wait for all your test results to come in, so further research can be more focused, depending on genotype and liver damage, etc. You did mention a liver specialist -- hopefully, you're seeing -- or will see -- a hepatologist. They're usually located in your larger, teaching hospitals, and in general have far more up-to-date knowledge on HCV and treatment protocols than Gastroenterologists.
All the best,
-- Jim
If the '64' in your moniker is the year you were born, we are close in age. How long have you had the virus - or do you know? I know most would be unable to pinpoint a definite time.
You are fairly new to treatment. How are you feeling? Did the news of your diagnosis, and now treatment, impact your relationship with friends and family? Did you have any Hep C symptoms before treatment? How are your 'current' lab results?
I am physically active and swim four evenings a week. After six weeks of treatment do you find yourself slowing down? If so, how substantial? I suspect that is a silly question, it would only make sense one would be knocked down to a point as the virus is being knocked out. What about cognitive skills? I play Chess once a week. Do you find much of a decline in your focus at this point? I work 30 hours a week and most of that in the public eye. (Those hours are considered full time in what I do)... If you are employed, do you continue to work?
If the '64' is your age, that is my parents' age. Speaking of which, did you tell you parents? Have they and the rest of your family members - siblings, children (if you have any), spouse been tested?
Best to you! Thank you for taking your time to respond. Breeze
You are fairly new to treatment. How are you feeling? Did the news of your diagnosis, and now treatment, impact your relationship with friends and family? Did you have any Hep C symptoms before treatment? How are your 'current' lab results?
I am physically active and swim four evenings a week. After six weeks of treatment do you find yourself slowing down? If so, how substantial? I suspect that is a silly question, it would only make sense one would be knocked down to a point as the virus is being knocked out. What about cognitive skills? I play Chess once a week. Do you find much of a decline in your focus at this point? I work 30 hours a week and most of that in the public eye. (Those hours are considered full time in what I do)... If you are employed, do you continue to work?
If the '64' is your age, that is my parents' age. Speaking of which, did you tell you parents? Have they and the rest of your family members - siblings, children (if you have any), spouse been tested?
Best to you! Thank you for taking your time to respond. Breeze
i am GT2b with stage 1 grade 2. i decided to tx hoping that this will clear me so i won't have to fight off more of this diease later. i am going on week 6 of tx. it's not as bad for me as i thought it would be. not wonderful either. welcome and good luck with your decision! hope to hear from you more!
Just so you know, the normal treatment duration is either 24 weeks ( for genotype 2 and 3) or 48 weeks for genotype 1. I realize you don't plan to treat now, but I wanted you to know that most people treat either 24 or 48 weeks. Those of us treating much longer have extenuating circumstances or substantial liver damage.
You mentioned in one post that it could take "2 years" from your life, I just wanted to straighten that out. As it happens, there just happen to be quite a few of us treating for a lot longer, but that isn't the norm.
Good luck with the biopsy results, check back in and let us know what they say.
You mentioned in one post that it could take "2 years" from your life, I just wanted to straighten that out. As it happens, there just happen to be quite a few of us treating for a lot longer, but that isn't the norm.
Good luck with the biopsy results, check back in and let us know what they say.
The "two weeks out of your life" was my phrase. It includes one year (54 weeks to be exact) treating and one year recovering, which I still am. That was made clear in my post above. It's also backed up by many others who post similar experiences as the provided in my above post show, i.e. the treatment experience does not necessarily end with the last peg shot. Of course, some have it a lot easier, but hardly anyone has it easy.
amen to jmjm'
i also cleared but if i could have waited i sure as h=ll would an still would now.in the 9 years i waited the svr rate went from 9% to 45% and i know it will get far far better in coming years. you could have far more serious problems. i had it 37 years. smile. you found some friends.
i also cleared but if i could have waited i sure as h=ll would an still would now.in the 9 years i waited the svr rate went from 9% to 45% and i know it will get far far better in coming years. you could have far more serious problems. i had it 37 years. smile. you found some friends.
Just so you know, the normal treatment duration is either 24 weeks ( for genotype 2 and 3) or 48 weeks for genotype 1. I realize you don't plan to treat now, but I wanted you to know that most people treat either 24 or 48 weeks. Those of us treating much longer have extenuating circumstances or substantial liver damage.
You mentioned in one post that it could take "2 years" from your life, I just wanted to straighten that out.
Good luck with the biopsy results, check back and let us know what they say.
You mentioned in one post that it could take "2 years" from your life, I just wanted to straighten that out.
Good luck with the biopsy results, check back and let us know what they say.
You seem like a very grounded individual and no doubt will do well whatever you decide once the test results come in. As far as telling folks to widen your support system, my suggestion is to tell and tread slowly, especially at work. Many have learned the hard way that disclosure is not always the best policy, and then others have had a more positive experience. Same with friends and even family. If you decide not to treat now, no one really has to know unless you feel secure and comfortable enough including them. Just don't expect everyone to react well. There's something about a chronic illness, albeit one with a stigma, that is different from breaking a leg or even a short-term cancer treatment. It seem that people's sympathy quotient is six weeks tops. Beyond that, if you aren't better, a lot of folks start to get annoyed :)
Be well,
-- Jim
Be well,
-- Jim
One last comment - - I appreciate everyone's response to me but particularly wanted to thank you Jim, for sharing (and admitting) the diffcult part of fighting this virus.
I had no idea and have so much to learn. To think treatment can take a huge chunk (two years out of one's life) is difficult to read, knowing this is what I too may and very likely will face. Reading the threads where it cost you (and many others) a slew of health problems leaves me with... well a realistic and clearer view than I had earlier this morning. To know that it will affect not only me but my friends/family and relationships, plus may leave me with some permanent side effects. leads me to think not only what is in store for me in the future but also thoughts of my past. (It is always present, isn't it?) Thank you for coming forward and being honest, even though I hated reading every word, I needed to. I am sorry that you've endured this. But thank you for telling me.
I had no idea and have so much to learn. To think treatment can take a huge chunk (two years out of one's life) is difficult to read, knowing this is what I too may and very likely will face. Reading the threads where it cost you (and many others) a slew of health problems leaves me with... well a realistic and clearer view than I had earlier this morning. To know that it will affect not only me but my friends/family and relationships, plus may leave me with some permanent side effects. leads me to think not only what is in store for me in the future but also thoughts of my past. (It is always present, isn't it?) Thank you for coming forward and being honest, even though I hated reading every word, I needed to. I am sorry that you've endured this. But thank you for telling me.
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
