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SHOULD I BEGIN TREATMENT FOR HEP c-HELP PLEASE
I went on this website because I am scheduled to begin treatment on 1-8-2009. I am a trial lawyer and have blocked out every Friday for the next 6 months so I can take the shot of Pegays Thursday night and then the pills 2 times a day.
I have read some of the threads on this site and am now both terrified and confused. Any help would be greatly appreciated.
I was diagnosed in 1994 during insurance physical. I have always been in good shape, 6 ft 180 and job or walk very fast 5-6 times a week 5 miles a day and have done so for years. My ALT/AST was always normal from 1994 until 2-2006. I took liver biopsy on 2-5-2006 and for the first time the blood test I took one day later showed my enzymes were above normal. I continue to believe that it cannot be a coincidence but my doctor says otherwise. My liver biopsy came back a 1 for fibrosis and inflamation and it was read by 3 experts and they all say it showed very little inflamation and minimal fibrosis.
My "titers" have been consistently under 300k and currently are at 110k
I get my blood drawn every 3-4 months and for last 2 years has been about 1.5 normal for both ALT and AST until my last blood test which showed 61 ALT and 37 AST, which I am told is now back to the high end of normal.
My doctor tells me that there is an extremely high chance that I will clear after 30 days (I am geno type 1b) and that if I do there is a 90% chance I will be cured and can stop treating after six months.
--
I have never taken any anti-depressant drugs and have declined the offer to begin prior to treatment beginning.
--
After reading these entries I am now thinking that since I am in good shape (I am 56 years old) that maybe I should wait until Vertex 950 or another medication is approved (I have been told by 2011 Vertex should be approved). My doctor has had me take liver spleen scans every 18months and they have always been normal.
So what do I do? What advise could anyone give me because I am terrified. I have a general belief that the only meds you should take are Milk Thistle, Omega-3 and Vitamin C which I have been taking every day for 14 years now!!!! So what guidance can you guys give me.
When I feel totally healthy and have no symptoms should I commence treatment and put these drugs in my system not knowing how they will effect me during treatment and beyond? However, on the other hand if I wait to treat, what are the chances that my liver will rapidly decompensate. My doctor says TREAT NOW because my titers have been low for over 2 years and are not at only 110k??? I had a blood transfusion when I was one year old and since then have not been engaged in any type of activity that could have led to my diagnosis. If it is true that I have had this since age 1 and if in 55 years it has only progressed to this point, should I "risk" that I will only get worse over a short period of time or should I "risk" the short and long term side effects of treatment with Pegays and Ribovirin?
HELP PLEASE with your thoughts and please be BRUTALLY HONEST because a lot is at stake for all of us and I am certain you folks who are involved with this website have much more knowledge than I do.
Sincerely
WK LAW
I have read some of the threads on this site and am now both terrified and confused. Any help would be greatly appreciated.
I was diagnosed in 1994 during insurance physical. I have always been in good shape, 6 ft 180 and job or walk very fast 5-6 times a week 5 miles a day and have done so for years. My ALT/AST was always normal from 1994 until 2-2006. I took liver biopsy on 2-5-2006 and for the first time the blood test I took one day later showed my enzymes were above normal. I continue to believe that it cannot be a coincidence but my doctor says otherwise. My liver biopsy came back a 1 for fibrosis and inflamation and it was read by 3 experts and they all say it showed very little inflamation and minimal fibrosis.
My "titers" have been consistently under 300k and currently are at 110k
I get my blood drawn every 3-4 months and for last 2 years has been about 1.5 normal for both ALT and AST until my last blood test which showed 61 ALT and 37 AST, which I am told is now back to the high end of normal.
My doctor tells me that there is an extremely high chance that I will clear after 30 days (I am geno type 1b) and that if I do there is a 90% chance I will be cured and can stop treating after six months.
--
I have never taken any anti-depressant drugs and have declined the offer to begin prior to treatment beginning.
--
After reading these entries I am now thinking that since I am in good shape (I am 56 years old) that maybe I should wait until Vertex 950 or another medication is approved (I have been told by 2011 Vertex should be approved). My doctor has had me take liver spleen scans every 18months and they have always been normal.
So what do I do? What advise could anyone give me because I am terrified. I have a general belief that the only meds you should take are Milk Thistle, Omega-3 and Vitamin C which I have been taking every day for 14 years now!!!! So what guidance can you guys give me.
When I feel totally healthy and have no symptoms should I commence treatment and put these drugs in my system not knowing how they will effect me during treatment and beyond? However, on the other hand if I wait to treat, what are the chances that my liver will rapidly decompensate. My doctor says TREAT NOW because my titers have been low for over 2 years and are not at only 110k??? I had a blood transfusion when I was one year old and since then have not been engaged in any type of activity that could have led to my diagnosis. If it is true that I have had this since age 1 and if in 55 years it has only progressed to this point, should I "risk" that I will only get worse over a short period of time or should I "risk" the short and long term side effects of treatment with Pegays and Ribovirin?
HELP PLEASE with your thoughts and please be BRUTALLY HONEST because a lot is at stake for all of us and I am certain you folks who are involved with this website have much more knowledge than I do.
Sincerely
WK LAW
Should I treat? In my case the decision came down to the following: Do want to to carry around a virus that will inevitably destroy my health as well as being a potential danger to those closest to me? Or do I want to treat knowing that the treatment will be harsh and theat the overall odds are 45% give or take for a cure?
For me the answer was a no-brainer. 6 months after I was first diagnosed I began treatment. Geno 1 at age 52 overweight but in otherwise good health. I went undetectable 1 months into treatment and remain so in my 7 month of treatment. All my liver and glucose tests went back to normal within 1 month of treatment. My blood pressure dropped and went back into normal range. I gave up smoking , caffeinated beverages and social drinking .
I lost my job (computer programmer) because of physical and mental side effects and went on temp state disability. Big deal. I can always get another job after treatment. Small price to pay for a healthy rest of my life and no fears about being a danger to others.
That was my thought process and how I feel about it now for myself.
For me the answer was a no-brainer. 6 months after I was first diagnosed I began treatment. Geno 1 at age 52 overweight but in otherwise good health. I went undetectable 1 months into treatment and remain so in my 7 month of treatment. All my liver and glucose tests went back to normal within 1 month of treatment. My blood pressure dropped and went back into normal range. I gave up smoking , caffeinated beverages and social drinking .
I lost my job (computer programmer) because of physical and mental side effects and went on temp state disability. Big deal. I can always get another job after treatment. Small price to pay for a healthy rest of my life and no fears about being a danger to others.
That was my thought process and how I feel about it now for myself.
There are so many other factors to consider not just age, geno and VL (first off although experts say a low starting VL is a good indicator it is NOT always so - I had a low VL and sometimes it makes it HARDER for us to clear...I don't know why but it is the case, maybe because our immune systems have been fighting the virus so hard that the meds can't respond as quickly to get our immune systems to do MORE than they already are? I don't know) but I had to treat for 72 weeks because I was not clear until somewhere after week 12 and before week 24 even though my 4 week test was all the way down to 400......it got stuck there and wouldn't go any lower. I was first told of this phenomenon when I started by someone else it happened to....and it is just a sad fact of life.
That said you have pro's and con's. Pro's are you are starting with little inflammation and have a good chance of recovering your liver back to stage 0 - that's a great magical thing. Me it was already too late for me when I found out I had this I was already stage 3.
Your liver isn't going to get better than it is and the disease will progress. Nobody knows for sure if the telepravir and trial drugs will ever be approved by the FDA or not. We've seen promising drugs come and go before (but these are looking good!).
I worked all 72 weeks but it wasn't easy. Some days I fell asleep at my desk.
You have to consider things like "will I have insurance later on if I decide to wait or could something happen to change that" (my tx cost was about $200,000 altogether with all the different meds and tests) do you have a good support group to help you out now? What should happen if treatment fails......with 50/50 odds you might need to treat again later, will your liver have enough healthy tissue later on if you need to do it again?
It's a big giant gamble and nobody has any hard facts whether you will succeed or not unfortunately. Its all guesswork and that is why you have to take every bit of it into account - not just the starting VL and grade/stage.
Good luck with your decision.
That said you have pro's and con's. Pro's are you are starting with little inflammation and have a good chance of recovering your liver back to stage 0 - that's a great magical thing. Me it was already too late for me when I found out I had this I was already stage 3.
Your liver isn't going to get better than it is and the disease will progress. Nobody knows for sure if the telepravir and trial drugs will ever be approved by the FDA or not. We've seen promising drugs come and go before (but these are looking good!).
I worked all 72 weeks but it wasn't easy. Some days I fell asleep at my desk.
You have to consider things like "will I have insurance later on if I decide to wait or could something happen to change that" (my tx cost was about $200,000 altogether with all the different meds and tests) do you have a good support group to help you out now? What should happen if treatment fails......with 50/50 odds you might need to treat again later, will your liver have enough healthy tissue later on if you need to do it again?
It's a big giant gamble and nobody has any hard facts whether you will succeed or not unfortunately. Its all guesswork and that is why you have to take every bit of it into account - not just the starting VL and grade/stage.
Good luck with your decision.
By coincidence, Willy posted on another thread (currently sitting below yours on the board) and I thought you might want to read his view at:
http://www.medhelp.org/posts/show/721962?post_id=post_3818539
I really appreciate Willy's viewpoint and wish I'd encountered it earlier. I'm about your age, with a similar profile and was somewhat pressured into treatment by my very zealous son, who is a cancer researcher and GraniteKonig's age. They both share an enthusiasm for the unequivocal benefits of medicine. I am more of a skeptic, as is my hepatologist who likewise thought I was in a position to wait for better and quicker protocols, without endangering my situation. The difference between you and me is that I was in a transitional stage and had no pressing responsibilities, so that made it an opportunity that I wasn't sure I'd have again. You, however, are plunk in the middle of career responsibilities and in this economic climate, it may not be the best time to put a foggy opinion to paper and in any way compromise your reputation.
It may seem hard to pull the plug on your upcoming treatment now that you have a start-up date next week, but in fact it's the easiest time. I could have pulled the plug right up to the moment I took my first injection in May and my doctor would have been more than agreeable that I wait for better protocols. Now I'm in week 32 of 48 and won't quit but do wish I'd had access to Willy's point of view when I made my decision to proceed. And as I said, it was a convenient and unpressured time for me but in my case, I would have done well to wait two or three years.
Of course, insurance coverage plays a factor for most people.
Here's a cut and paste of Willy's post:
Willy50
Male
Member since Oct 2006
Mood: Willy50 loving spring after a brutal winter in the gulag.
2 hours ago
To: the goal is good health.
What is the best way to attain or maintain that? I am 55 and in good health with low damage staging. Yes, I could treat, but I may be able to limit my collateral liver damage through some diet and lifestyle modifications while I WAIT. This isn't proclaiming a cure; it's only about attempting to mitigate damages while monitoring ones progression. My take on it is that IF I can wait things out for a few years I will have a far better chance of treating once successfully and for a far shorter period. Since chemotherapy is not without it's own danger and potential damages one must weigh out the risks and rewards.
For me it is far more complicated than the presented premise.
Think about 9-12 trains leaving Topeka at various speeds. ; ) (and differing departure dates)
One might be represented by going to the local doctor and doing TX today.
Another might be going further out of town and getting a great hepatologist as Jim suggested and doing TX TODAY, possibly with some *tweaking* of treatment convention.
Still yet another might be doing TX but adding Alinia to the mix
or getting onto a trial such as Boceprevir or Telaprevir.
All of these methods might yield different outcomes, mid course response rates, side effects, treatment lengths and ultimate outcomes. One also cannot also simply determine "success" by whether one attains an SVR or not. Many people suffer some short term, long term and in some cases permanent sides from TX.
Some of the "other trains leaving Topeka" but further in the future........
The ability to take an approved drug such as Telaprevir or Boceprevir and have the ability to treat with more flexibility than current trials allow; that may mean dose increases, pre-dosing with SOC, a "surge" at the beginning of TX, combining with Alinia or other drugs that may reduce IR that are just being evaluated now.
...... or a future trial in which protease inhibitors might be combined with polymerase inhibitors.
.........or any of the vast number of drugs in trials right now.
....... or use of the Chron-vac inoculation which is showing great promise in greatly reducing viral load. We may soon be able to rid ourselves of the virus without doing chemotherapy, or lowering our viral load such that a much shorter course is possible.
So many trains that one can catch....... and the passengers are all different, too. Some MUST travel today, some can wait to catch their train. Some who wait may wish that they had left earlier. Some who leave today may end up wishing that they waited. We all progress at differing rates based on genetics, lifestyle factors, age, sex, etc. We will all experience differing extra-hepatic issues if we don't treat just as surely as we will end up with differing side effects from SOC if we DO treat.
For me the calculus of the equation; when to treat, what to treat with per each individual case is more complicated than many people consider.
I am still in the process of waiting.
I just passed on an opportunity to get into a trial using Telaprevir on treatment naives. I had a 100% chance of getting triple therapy. I still ask myself; why would I pass that up for free? It seems like a no-brainer.
Here's why I waited. We may have only one pass on the protease inhibitor train. It is theorized that resistance will occur if the treatment is unsuccessful. I chose to wait (since I have some leeway in time) knowing that I will be able to treat with greater odds of clearing in the future as well as a shorter treatment time.
It was a hard choice; it may not have even been the RIGHT choice, but just when does one know for certain what to do in the treatment equation?
Best wishes and happy new year......
Willy
:
"
http://www.medhelp.org/posts/show/721962?post_id=post_3818539
I really appreciate Willy's viewpoint and wish I'd encountered it earlier. I'm about your age, with a similar profile and was somewhat pressured into treatment by my very zealous son, who is a cancer researcher and GraniteKonig's age. They both share an enthusiasm for the unequivocal benefits of medicine. I am more of a skeptic, as is my hepatologist who likewise thought I was in a position to wait for better and quicker protocols, without endangering my situation. The difference between you and me is that I was in a transitional stage and had no pressing responsibilities, so that made it an opportunity that I wasn't sure I'd have again. You, however, are plunk in the middle of career responsibilities and in this economic climate, it may not be the best time to put a foggy opinion to paper and in any way compromise your reputation.
It may seem hard to pull the plug on your upcoming treatment now that you have a start-up date next week, but in fact it's the easiest time. I could have pulled the plug right up to the moment I took my first injection in May and my doctor would have been more than agreeable that I wait for better protocols. Now I'm in week 32 of 48 and won't quit but do wish I'd had access to Willy's point of view when I made my decision to proceed. And as I said, it was a convenient and unpressured time for me but in my case, I would have done well to wait two or three years.
Of course, insurance coverage plays a factor for most people.
Here's a cut and paste of Willy's post:
Willy50
Male
Member since Oct 2006
Mood: Willy50 loving spring after a brutal winter in the gulag.
2 hours ago
To: the goal is good health.
What is the best way to attain or maintain that? I am 55 and in good health with low damage staging. Yes, I could treat, but I may be able to limit my collateral liver damage through some diet and lifestyle modifications while I WAIT. This isn't proclaiming a cure; it's only about attempting to mitigate damages while monitoring ones progression. My take on it is that IF I can wait things out for a few years I will have a far better chance of treating once successfully and for a far shorter period. Since chemotherapy is not without it's own danger and potential damages one must weigh out the risks and rewards.
For me it is far more complicated than the presented premise.
Think about 9-12 trains leaving Topeka at various speeds. ; ) (and differing departure dates)
One might be represented by going to the local doctor and doing TX today.
Another might be going further out of town and getting a great hepatologist as Jim suggested and doing TX TODAY, possibly with some *tweaking* of treatment convention.
Still yet another might be doing TX but adding Alinia to the mix
or getting onto a trial such as Boceprevir or Telaprevir.
All of these methods might yield different outcomes, mid course response rates, side effects, treatment lengths and ultimate outcomes. One also cannot also simply determine "success" by whether one attains an SVR or not. Many people suffer some short term, long term and in some cases permanent sides from TX.
Some of the "other trains leaving Topeka" but further in the future........
The ability to take an approved drug such as Telaprevir or Boceprevir and have the ability to treat with more flexibility than current trials allow; that may mean dose increases, pre-dosing with SOC, a "surge" at the beginning of TX, combining with Alinia or other drugs that may reduce IR that are just being evaluated now.
...... or a future trial in which protease inhibitors might be combined with polymerase inhibitors.
.........or any of the vast number of drugs in trials right now.
....... or use of the Chron-vac inoculation which is showing great promise in greatly reducing viral load. We may soon be able to rid ourselves of the virus without doing chemotherapy, or lowering our viral load such that a much shorter course is possible.
So many trains that one can catch....... and the passengers are all different, too. Some MUST travel today, some can wait to catch their train. Some who wait may wish that they had left earlier. Some who leave today may end up wishing that they waited. We all progress at differing rates based on genetics, lifestyle factors, age, sex, etc. We will all experience differing extra-hepatic issues if we don't treat just as surely as we will end up with differing side effects from SOC if we DO treat.
For me the calculus of the equation; when to treat, what to treat with per each individual case is more complicated than many people consider.
I am still in the process of waiting.
I just passed on an opportunity to get into a trial using Telaprevir on treatment naives. I had a 100% chance of getting triple therapy. I still ask myself; why would I pass that up for free? It seems like a no-brainer.
Here's why I waited. We may have only one pass on the protease inhibitor train. It is theorized that resistance will occur if the treatment is unsuccessful. I chose to wait (since I have some leeway in time) knowing that I will be able to treat with greater odds of clearing in the future as well as a shorter treatment time.
It was a hard choice; it may not have even been the RIGHT choice, but just when does one know for certain what to do in the treatment equation?
Best wishes and happy new year......
Willy
:
"
I too picked friday as my shot day and quickly found out that Tuesay and Wed. were my worst days.
I talked my np into letting me back it up to thursday but she would not let me move it any further back.
Maybe someone should start a poll for prior tx'ers and find out the worst day..... might be interesting... good idea! I will!
good luck!
bandman
I talked my np into letting me back it up to thursday but she would not let me move it any further back.
Maybe someone should start a poll for prior tx'ers and find out the worst day..... might be interesting... good idea! I will!
good luck!
bandman
Looks like you have kept an eye the virus for some time but the time is at hand for the decision is to, just do it. If not it will be like a nagging nerve of should of, could of, but waited and for what. The viral load has remained constant but at some point the immune system will start to waver because of other illnesses needing attention, not that the viral load is a precise indicator of liver damage but as it rises from low numbers to higher numbers it is an indication the immune system is starting to be over run by the virus like a scratch being unattended and at our age the virus has the upper hand going forward.
I am a 1b or was hopefully and did 52 weeks and was not prepared at all going into treatment and did not really think about it other than the fact the nerve started twitching more often than not and the fatigue started taking its toll, ignorance blitz in some cases but the reality eventually sinks in in that its not going to get any better. It was time to just do it and get er done. Looking back the first 12 weeks of treatment were the hardest because of the many biochemistry changes going on with in and was the most unsettling time physiologically. The first shot brought on a constant headache and mild flu like symptom then the riba kicked in about three days later and by the second shot I was in quicksand. Jim’s alternating opinion of many is pretty much on the mark for which I hold him in a high regard, of the presentence of the 4 week pcr to be used as a basis foundation in what time frame you may be looking at and go from there. I will bring up one point about the peg dosing time, I have personally found that when taking the peg shot on Friday I was hit the hardest by Monday / Tuesday and I see that you plan to take the shot on Thursday, you may want to read up on the inserts of the meds and the cmax times of each. Good Luck in your decision going forward. BTW! Welcome to Hepperville.
jasper
I am a 1b or was hopefully and did 52 weeks and was not prepared at all going into treatment and did not really think about it other than the fact the nerve started twitching more often than not and the fatigue started taking its toll, ignorance blitz in some cases but the reality eventually sinks in in that its not going to get any better. It was time to just do it and get er done. Looking back the first 12 weeks of treatment were the hardest because of the many biochemistry changes going on with in and was the most unsettling time physiologically. The first shot brought on a constant headache and mild flu like symptom then the riba kicked in about three days later and by the second shot I was in quicksand. Jim’s alternating opinion of many is pretty much on the mark for which I hold him in a high regard, of the presentence of the 4 week pcr to be used as a basis foundation in what time frame you may be looking at and go from there. I will bring up one point about the peg dosing time, I have personally found that when taking the peg shot on Friday I was hit the hardest by Monday / Tuesday and I see that you plan to take the shot on Thursday, you may want to read up on the inserts of the meds and the cmax times of each. Good Luck in your decision going forward. BTW! Welcome to Hepperville.
jasper
Wow, it is amazing how close in time our projected start dates are.
I think you are lucky to get into this trial because you have a better shot at clearing with the Vertex 950 from all I have read. I think my decision would be easier if I was in your trial.
You are correct about one thing. We can always look back and wonder whether our decision was the right one. You are brave to be about to go forth. Please keep me informed as to how you do after each week and I will do the same if I begin to treat. It will be very helpful to both of us.
My prayers are with you.
I think you are lucky to get into this trial because you have a better shot at clearing with the Vertex 950 from all I have read. I think my decision would be easier if I was in your trial.
You are correct about one thing. We can always look back and wonder whether our decision was the right one. You are brave to be about to go forth. Please keep me informed as to how you do after each week and I will do the same if I begin to treat. It will be very helpful to both of us.
My prayers are with you.
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