Aa
Nervous about tx and how it will effect everyday life.
I found out I have HCV last october. The dr is encouraging to start tx as soon as possible but I have been putting it off because of fear. My VL in Oct 08 was 81,000 and in december was 441. I am guessing I have probably had this 10 years but really cant say how I got it. I am not a drinker so I have that going for me. My question is How has tx effected your daily lives. I have young kids and now a single parnet and finishing up my degree this fall. I am really worried that tx is going to make my life come to a stop. Please share with out tx has effected your life. I know it varies from person to person but maybe it will give me some hope. I am supposed to start the last week of July.
I agree with the need for biopsy to really know the condition of your liver. If your doctor won't do it, find another one, preferably a hepatologist.
I was a single Mom of 3 working and going to school part time for 5 years. I found that to be very hard... of course it may have had something to do with the fact that I was 41 and 44 when my last 2 were born, but I can tell you that I could NOT have dealt with that and tx at the same time. Just the concern of not being able to make it to work every day would be a huge added stress, then the kids may get sick, which is something all single moms have to worry about. I've only done 6 shots so far and have already learned that if I don't take it REALLY EASY for the next 2 days after my shot, the whole rest of the week is MUCH HARDER to get through. I don't know how old your kids are, but mine seemed to need me more on the days when I felt the worse, and without another adult in the house...
I don't want to be super negative here, but seriously, get that biopsy. If your liver is in pretty good shape, I'd put off tx until there was some kind of support network for you in place, and not so many demands on you. Once you finish your degree and get into a job that you are training for, and maybe built up some savings in case you have to miss some work, then do the tx. Of course this is based on the condition of your liver, if it is very damaged, you need to treat to make sure you are here for your kids as they grow up.
Being a single Mom was the hardest thing I have ever done... but I'm SSSOOOOOOOOOOOO glad I went down that road because my life now is SSSOOOOO much better than it could ever have been. Just learn as much as possible, and then try to make a wise decision. Feel free to share all of your doubts and fears here, we love to listen and help here.
I was a single Mom of 3 working and going to school part time for 5 years. I found that to be very hard... of course it may have had something to do with the fact that I was 41 and 44 when my last 2 were born, but I can tell you that I could NOT have dealt with that and tx at the same time. Just the concern of not being able to make it to work every day would be a huge added stress, then the kids may get sick, which is something all single moms have to worry about. I've only done 6 shots so far and have already learned that if I don't take it REALLY EASY for the next 2 days after my shot, the whole rest of the week is MUCH HARDER to get through. I don't know how old your kids are, but mine seemed to need me more on the days when I felt the worse, and without another adult in the house...
I don't want to be super negative here, but seriously, get that biopsy. If your liver is in pretty good shape, I'd put off tx until there was some kind of support network for you in place, and not so many demands on you. Once you finish your degree and get into a job that you are training for, and maybe built up some savings in case you have to miss some work, then do the tx. Of course this is based on the condition of your liver, if it is very damaged, you need to treat to make sure you are here for your kids as they grow up.
Being a single Mom was the hardest thing I have ever done... but I'm SSSOOOOOOOOOOOO glad I went down that road because my life now is SSSOOOOO much better than it could ever have been. Just learn as much as possible, and then try to make a wise decision. Feel free to share all of your doubts and fears here, we love to listen and help here.
I am a little worried myself about starting treatment, but since everthing in my life points in the right direction and since finding this site and some answers . I am going to begin treatment on Monday. I am in a great relationship , have a great family and luckily for me I am on unemployment , so for me it is a no brainer. i want to try and get rid of this if i can. Now for you I guess it all depends on how you respond to the medication and the side effects. And this is something I think you can start and if it is too much now maybe once you finish school then try again. i just joined a few days ago and have gotten so many answers that I had to share my thoughts with u.... one day at a time. Stay strong and keep a positive attitude.
Selecting the right time and conditions to embark on treatment is as importnat as the medical aspects. Go slow, get all the important facts and don't rush into any decisions. Life precedes treatment.
I will be finishing up my 48 weeks Wednesday. My sx throughout have been very doable. I was not my usual energetic self by any means, but all my sx were light. No one would ever know I was on tx....unless they came over and saw what a mess my house was...or invited me for girls night out and I ordered green tea instead of wine, lol!
My hgb went from 14 to 10 during the first few weeks and stayed there pretty much throughout, so fatigue was my main complaint. I nap about 3 hours during the day-unless I'm at work.
I work 2 days a week, and go to school part time. When not doing those 2 things, I'm pretty much on the couch studying. Sometimes I cook, twice this year I've mopped. But I am basically living life in low key mode. Geno 1a, vl 900,000, biopsy 1/0.
My light (and flexible) work schedule was the main reason I wanted to tx now. I wanted to be done before nursing starts in January and I was fortunate enough to find a trial that started during my time frame. Being in school, one possible scenerio (for 24 wk tx) would be to start over Christmas break and finish at the end of summer or start in the beginning of summer and finish by Christmas break....so ya really have to take your schedule into consideration....especiallly if you are going to tx now and have to do 48 weeks.
My daughter is a geno 1a with a vl of 400,000, biopsy 1/0. She is a college student and had planned on treating this summer. After much discussion with our hepatologist, we decided that because the current standard for our genotype is 48 weeks of tx...by the time she finished, the new drugs could be available. Meaning her tx time would be only 24 weeks.
For us the decision to wait is worth it for doing 1/2 the tx time. I am in a trial and thought I would be treating for 24weeks, but was extended for the full 48....and trust me...the 2nd 24 weeks can be a very different animal than the first 24.
I understand and agree that tx time for geno 1s on SOC can be reduced to 24 weeks based on low vl and rapid response(and age, sex and body weight) but with the new PI's added in, it can take those "if's" out of the equation.
The biopsy is a relatively simple procedure, but the information it will provide you will be helpful in making treatment decisions. I would highly suggest getting one, especially if you are going to watch and wait. (the biopsy is key to the "watch" part)
Fatigue is pretty much going to be a given. And not like any fatigue you may have had before, interferon and riba carry their own special brand of tired. You may also experience mood changes. Being fatigued can make you pretty cranky, not to mention these drugs can deplete your seratonin and that can lead to depression.
Good luck to you. Please keep us posted on your decision.
Isobella
My hgb went from 14 to 10 during the first few weeks and stayed there pretty much throughout, so fatigue was my main complaint. I nap about 3 hours during the day-unless I'm at work.
I work 2 days a week, and go to school part time. When not doing those 2 things, I'm pretty much on the couch studying. Sometimes I cook, twice this year I've mopped. But I am basically living life in low key mode. Geno 1a, vl 900,000, biopsy 1/0.
My light (and flexible) work schedule was the main reason I wanted to tx now. I wanted to be done before nursing starts in January and I was fortunate enough to find a trial that started during my time frame. Being in school, one possible scenerio (for 24 wk tx) would be to start over Christmas break and finish at the end of summer or start in the beginning of summer and finish by Christmas break....so ya really have to take your schedule into consideration....especiallly if you are going to tx now and have to do 48 weeks.
My daughter is a geno 1a with a vl of 400,000, biopsy 1/0. She is a college student and had planned on treating this summer. After much discussion with our hepatologist, we decided that because the current standard for our genotype is 48 weeks of tx...by the time she finished, the new drugs could be available. Meaning her tx time would be only 24 weeks.
For us the decision to wait is worth it for doing 1/2 the tx time. I am in a trial and thought I would be treating for 24weeks, but was extended for the full 48....and trust me...the 2nd 24 weeks can be a very different animal than the first 24.
I understand and agree that tx time for geno 1s on SOC can be reduced to 24 weeks based on low vl and rapid response(and age, sex and body weight) but with the new PI's added in, it can take those "if's" out of the equation.
The biopsy is a relatively simple procedure, but the information it will provide you will be helpful in making treatment decisions. I would highly suggest getting one, especially if you are going to watch and wait. (the biopsy is key to the "watch" part)
Fatigue is pretty much going to be a given. And not like any fatigue you may have had before, interferon and riba carry their own special brand of tired. You may also experience mood changes. Being fatigued can make you pretty cranky, not to mention these drugs can deplete your seratonin and that can lead to depression.
Good luck to you. Please keep us posted on your decision.
Isobella
Hw, biopsy is really important because If you have no damage, stage 0 w no fibrosis it does give you a time option, but a low viral load is very good because there are several studies that make it clear that viral loads at, or below 400,000 IU Ml is a positive predictor that with current tx you have an increased chance to clear the virus, your age is also in your favor. In fact, with a low viral load your chance to go SVR is more like 65% than 45% as a G1. Your chance of RVR at 4 weeks is also improved and If you achieve that your chance to go SVR goes up to about 89%.
If you can go to a major university and see a top Hepitoligist there. These programs are the best and the nursing and education is superior to a private DR.
I assume your AST ALT levels are also0 fairly normal.?
I am a 56 year old male, ride my bike 6 days per week, and run a business. I am working very hard at managing my health during treatment. This means eating well and often, drinking a ton of water and and staying as focused as possible while on treatment.
I inject on Saturday evening. I use Sunday to mostly recover and am back at work Monday. I have maintained exercise and all activities, but no doubt you need to expect some fatigue and possibly flu like symptoms for certain. I may be lucky as I run a low grade fever the first day and it then comes and goes. It is very manageable. Aside from that and some headaches I have no other side effects, but I also take a lot of supplements and work hard at managing tx. You can do this. It has not been that bad for me, do not be afraid of what you do not know, it is easy to get psyched out on web sites.
Best of luck.
T
If you can go to a major university and see a top Hepitoligist there. These programs are the best and the nursing and education is superior to a private DR.
I assume your AST ALT levels are also0 fairly normal.?
I am a 56 year old male, ride my bike 6 days per week, and run a business. I am working very hard at managing my health during treatment. This means eating well and often, drinking a ton of water and and staying as focused as possible while on treatment.
I inject on Saturday evening. I use Sunday to mostly recover and am back at work Monday. I have maintained exercise and all activities, but no doubt you need to expect some fatigue and possibly flu like symptoms for certain. I may be lucky as I run a low grade fever the first day and it then comes and goes. It is very manageable. Aside from that and some headaches I have no other side effects, but I also take a lot of supplements and work hard at managing tx. You can do this. It has not been that bad for me, do not be afraid of what you do not know, it is easy to get psyched out on web sites.
Best of luck.
T
No one ever said low VL had anything to do with liver damage, just positive predictive value.
All the studies I have read agree with Trish; there is no correlation between viral load and liver damage. Only a biopsy can tell you if you have time to wait or not. If you do some google searches, you can come up with any number of studies that will tell you that viral load and liver enzymne do not directly corelate to liver damage.
I treated a numb er of times and found it very difficult to work, but I did it. Every one is different, so our experiences can give you the upper and lower bounds of difficulty, but where you fall is impossible to guess.
Best of luck to you.
Eric
I treated a numb er of times and found it very difficult to work, but I did it. Every one is different, so our experiences can give you the upper and lower bounds of difficulty, but where you fall is impossible to guess.
Best of luck to you.
Eric
I seem to remember reading that low VL <400,000 plus minimum liver damage people could do the short course. Of course that means having a biopsy done.
I had a VL of 620,000 and went the full 48 weeks. For me, it was brutal. Some days I didn’t feel bad but I never felt good.
Anyone remember that lawyer who quit at 16-18 weeks and he cleared? That was nice news.
I had a VL of 620,000 and went the full 48 weeks. For me, it was brutal. Some days I didn’t feel bad but I never felt good.
Anyone remember that lawyer who quit at 16-18 weeks and he cleared? That was nice news.
I disagree that viral load has EVERYTHING to do with it. The degree of liver damage you have has MOST to do with determining how much time you have to wait before starting treatment. If you have less liver damage, Stage 1 and up to Stage 2, you have some choice as long as you keep monitoring your the progression of your liver damage. The speed of liver progression varies from person to person. It generally progresses slowly but not for everyone so that's a crapshoot and why ongoing monitoring is necessary.
Your specs are good for starting treatment early but they're also potentially good for waiting to do treatment until it fits into your life. The *key* to making that decision..is the biopsy to determine what stage your liver damage is at. And btw..a liver biopsy may sound like a big deal but it's usually a very simple and relatively painless procedure.
As Bill said, you being a Geno 1 currently means 48 weeks of treatment. While a certain amount of data indicates that treatment may be able to be shortened to 24 weeks for those who clear very early, i.e. 4 weeks or sooner, there aren't many Geno 1's who are prepared to do that right off the top as a matter of course just yet.
When you start treatment you have to be prepared for the WHOLE enchilada. That you're going to do 48 weeks, that the side effects could be manageable but could be debilitating to the point where studying for your degree could be impacted. If you're in the final stages studying for your degree, I'd be strongly considering waiting to start treatment until you're done, particularly if you're done by December or within the year.
I'd also be very suspect about the credentials of a doctor who would put someone through treatment without a biopsy. I know some docs do that - my first doctor wanted to do that and that was one of the main reasons I went looking for a second opinion. Some docs figure if you're going to do treatment anyway then a biopsy is irrelevant but as far as I'm concerned a biopsy is a requirement so you know what your status is. I'd also be suspect about a doctor who doesn't tell you that you have options and wouldn't take into account that you're finishing up your degree this fall. Did this doctor explain what side effects you could expect as well and how the treatment will impact you?
It's pretty serious treatment with some hard hitting drugs and potentially serious side effects. It will take 48 weeks out of your life and a certain amount of recovery time before you get quite back to normal. You want to make sure you have a doctor who knows what they're doing and has good experience treating people with Hep C. You want to be looking for a hepatologist - the best ones are usually found in larger teaching hospitals. At this point, I'd get a biopsy AND a second opinion if you can - learn more about what you can expect from treatment, what the new drugs are, what drug trials are and what your options are with regards to waiting and take some time to decide what is best for you. Be prepared for what it CAN be like. Alot of us work through treatment but it's not easy.
Good luck.
Trish
Your specs are good for starting treatment early but they're also potentially good for waiting to do treatment until it fits into your life. The *key* to making that decision..is the biopsy to determine what stage your liver damage is at. And btw..a liver biopsy may sound like a big deal but it's usually a very simple and relatively painless procedure.
As Bill said, you being a Geno 1 currently means 48 weeks of treatment. While a certain amount of data indicates that treatment may be able to be shortened to 24 weeks for those who clear very early, i.e. 4 weeks or sooner, there aren't many Geno 1's who are prepared to do that right off the top as a matter of course just yet.
When you start treatment you have to be prepared for the WHOLE enchilada. That you're going to do 48 weeks, that the side effects could be manageable but could be debilitating to the point where studying for your degree could be impacted. If you're in the final stages studying for your degree, I'd be strongly considering waiting to start treatment until you're done, particularly if you're done by December or within the year.
I'd also be very suspect about the credentials of a doctor who would put someone through treatment without a biopsy. I know some docs do that - my first doctor wanted to do that and that was one of the main reasons I went looking for a second opinion. Some docs figure if you're going to do treatment anyway then a biopsy is irrelevant but as far as I'm concerned a biopsy is a requirement so you know what your status is. I'd also be suspect about a doctor who doesn't tell you that you have options and wouldn't take into account that you're finishing up your degree this fall. Did this doctor explain what side effects you could expect as well and how the treatment will impact you?
It's pretty serious treatment with some hard hitting drugs and potentially serious side effects. It will take 48 weeks out of your life and a certain amount of recovery time before you get quite back to normal. You want to make sure you have a doctor who knows what they're doing and has good experience treating people with Hep C. You want to be looking for a hepatologist - the best ones are usually found in larger teaching hospitals. At this point, I'd get a biopsy AND a second opinion if you can - learn more about what you can expect from treatment, what the new drugs are, what drug trials are and what your options are with regards to waiting and take some time to decide what is best for you. Be prepared for what it CAN be like. Alot of us work through treatment but it's not easy.
Good luck.
Trish
In my opinion and experience (low VL like you), Viral Load has EVERYTHING to do with it. I'm assuming you are a young white female, the best odds group for successful treatment. You have the trump card of having a low VL, which has tremendous positive predictive value. Your VL's jumping around (that's common) but the 2 figures are absurdly low. I it were me, I'd finish the degree, then find a doctor to agree to treat me for 6 months, as they do low VL patients in Europe and Asia. Have a PCR test four weeks after starting and if you're clear, you're a good candidate for short TX. I did a 1 wk. PCR and was clear by then. It's a great encouragement to get through treatment by clearing early.
The one guaranteed side effect is tired. The ribivirin antiviral med breaks down the red blood cell hemoglobin, the oxygen carrier. You will be able to work, you may still be taking the kids to the park but you won't be sliding with them, you'll be sitting on a bench in the shade. Life does not stop, but it's like having kids, it changes for a while, then it changes back and your life is stronger.
The one guaranteed side effect is tired. The ribivirin antiviral med breaks down the red blood cell hemoglobin, the oxygen carrier. You will be able to work, you may still be taking the kids to the park but you won't be sliding with them, you'll be sitting on a bench in the shade. Life does not stop, but it's like having kids, it changes for a while, then it changes back and your life is stronger.
Wanted to wish you good luck in starting tx and welcome to the forum. You found a great place to educate yourself, ask questions and get more familair and knowledgable about HCV. I tx'd for 55 weeks I wasnt able to work my HGB dropped and I was just too weak and sick. There are MANY here that did 72 weeks and got thru working everyday and found it doable..Everyone is so different I went from the bed to the couch and on a good day a ride in the car. But all in all was not able to do anymore than that. I was too out of breath the entire time due to LOW HGB. PLEASE REMEMEBER people that are on this forum most do struggle to some degrees with tx. The people that do well on tx do not need to join a forum because they are not having many symptoms. You will see as you hang around how man people found tx doable.......Take one day at a time..try not to predict tomorrow and DRINK LOTS AND LOTS OF LIQUIDS ITS IMPERATIVE.
You must keep your body hydrated at all times.
Wish you well and again stay in tuned here you will receive lots of support.
Charm
You must keep your body hydrated at all times.
Wish you well and again stay in tuned here you will receive lots of support.
Charm
Good input from Bill as always.
We are about 2-years from a major change in the way Hep-C is being treated. The medications are changing as promising drugs are in the final stages of development, research and testing. A fairly standard feedback from physicians seems to be that if the damage caused by Hep-C is not severe yet, then wait until the more effective new medications have reached final approval by the FDA.
A possible advantage of treating now is that if you can get in on one of the clinical trials with one of the new meds such as Telapravir or Bocepravir your treatment would be paid for by the drug company. They are showing very promising results.
Side effects:
I am a single parent with 17, 15 and 2 1/2 year olds. I am the only source of income in my home that stands between us sleeping in a home (trailer) and under the bridge or in a homeless shelter. I barely hold on sometimes. It is like being in AA or NA and doing treatment a day at a time. It comes in waves, there are time when I am too sick to work but most of the time I manage to hang in there. The specific symptoms from the meds are extremely multiple and varied. Keep on monitoring posts from this site and soak up all information you can from different sources and the answer to treat or wait will come to you. Welcome to the site.
Joey
We are about 2-years from a major change in the way Hep-C is being treated. The medications are changing as promising drugs are in the final stages of development, research and testing. A fairly standard feedback from physicians seems to be that if the damage caused by Hep-C is not severe yet, then wait until the more effective new medications have reached final approval by the FDA.
A possible advantage of treating now is that if you can get in on one of the clinical trials with one of the new meds such as Telapravir or Bocepravir your treatment would be paid for by the drug company. They are showing very promising results.
Side effects:
I am a single parent with 17, 15 and 2 1/2 year olds. I am the only source of income in my home that stands between us sleeping in a home (trailer) and under the bridge or in a homeless shelter. I barely hold on sometimes. It is like being in AA or NA and doing treatment a day at a time. It comes in waves, there are time when I am too sick to work but most of the time I manage to hang in there. The specific symptoms from the meds are extremely multiple and varied. Keep on monitoring posts from this site and soak up all information you can from different sources and the answer to treat or wait will come to you. Welcome to the site.
Joey
While those are indeed all good reasons to begin treatment, we aren’t all always ready to go for it. If you are going to treat anyway, a biopsy might not be necessary, I agree, However, a biopsy might yield enough info to justify delay.
As far as treatment is concerned, genotype 1 patients require at minimum 48 weeks of treatment. If you have a slow response, additional weeks may be necessary to achieve viral eradication. Many of us are now treating for 72 weeks, some more.
I managed relatively well with treatment; and successfully completed 152 weeks over four years. Others have a very difficult time, and become quite ill. Do you have good family support? How about school and work? Are you able to take time off or reduce your hours if needed? It might not be necessary, but at times, it’s unavoidable.
Weekends are slow here, but if you continue to check in, others will offer their experiences as well.
Best to you,
Bill
As far as treatment is concerned, genotype 1 patients require at minimum 48 weeks of treatment. If you have a slow response, additional weeks may be necessary to achieve viral eradication. Many of us are now treating for 72 weeks, some more.
I managed relatively well with treatment; and successfully completed 152 weeks over four years. Others have a very difficult time, and become quite ill. Do you have good family support? How about school and work? Are you able to take time off or reduce your hours if needed? It might not be necessary, but at times, it’s unavoidable.
Weekends are slow here, but if you continue to check in, others will offer their experiences as well.
Best to you,
Bill
May I suggest a second opinion. As far as I know starting treatment without a biopsy is a HUGE no no.
My dr feels because I am young, dont drink and have low viral load he says he wasnt going to do a liver biopsy before tx. I am 1a geotype.
The decision to undergo treatment for HCV has very little to do with viral load, and everything to do with the amount of liver damage you might have. This is generally determined by liver biopsy; viral load is only important when you begin treatment; then it’s used as a barometer to gauge response to the meds.
If you have little to no damage at this time a case could be made to postpone treatment; many of us take the ‘watch and wait’ position. Usually, a biopsy every four or five years is sufficient to monitor progression, and if it gets worse, you can treat then.
If several years will allow you to finish school; discuss this with your doctor. Also, there are new drugs that are in late phase clinical trial that might reduce treatment time, as well as increase the efficacy of treatment. They will be used initially with the current interferon and ribavirin; but this might be another reason to postpone/delay treatment. What genotype are you?
Take care, and welcome to the discussion group--
Bill
If you have little to no damage at this time a case could be made to postpone treatment; many of us take the ‘watch and wait’ position. Usually, a biopsy every four or five years is sufficient to monitor progression, and if it gets worse, you can treat then.
If several years will allow you to finish school; discuss this with your doctor. Also, there are new drugs that are in late phase clinical trial that might reduce treatment time, as well as increase the efficacy of treatment. They will be used initially with the current interferon and ribavirin; but this might be another reason to postpone/delay treatment. What genotype are you?
Take care, and welcome to the discussion group--
Bill
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