Aa
Everyday I struggle
Everyday I struggle with the decision to treat now or wait, but I'm getting all the test in order so when it's time I'm ready. This truly feels like the hardest thing I've ever had to decide.
Hello!
We haven't met before, but I'm an "oldie" here too. I'm a 3A and was stage 1, grade 1 with a 465,000 viral load. my initial AST was 75 and ALT was 65 and I'd had the hep C for about 5 years by the time I treated.
Like you, I explored every possible option I could think of (I think I may have invented a few) as I dreaded treatment and the possible long-lasting effects as I did the disease. -I'm a Paramedic and have seen several patients slowly die from liver failure. It is a miserable, awful and painful process and it is slow. Usually, in the last two years of the patient's life, they have little quality of life, take lactulose to absorb the ammonia building up in their blood. The lactulose gives them horrid smelling projectile diarrhea and their bellies swell from the water that gets trapped inside their abdominal cavity. When the fluid builds up too much (in later stages about every two weeks), they can't breathe because of the pressure on their diaphragm and have to have a large needle pierced into their abdomen to draw off the fluid. Eventually, the ammonia level gets too high, kills their kidneys, makes their brain swell, and they eventually go into a coma and die. Not a pretty picture. -And rarely do heppers get new livers because, by the time they need one, their bodies are too damaged to survive the transplant.
With this knowledge, I tried other things first. Sho-Saiko-To, the Japanese treatment for Hep C support immune system health and liver repair is something I tried for 6 months prior to treatment. My liver enzymes did drop and I had more energy, but my viral load didn't change much. Just before I made my decision, I even tried an experimental treatment -IV germanium infusion, which is still in the dog lab studies. It has had some promising results for abolishing cancerous liver tumors (in dogs) and, since all cancers are caused by viruses, it made sense that it could work on Hep C as well. With one dose, my viral load dropped from 465,000 to 16,000. I still wonder if I'd done a second dose, it it would have done in the hep C...
Anyhow, I decided to go ahead with treatment. I was in good health, my immune system was still strong, I was in early stages, and I was able to take time off work without it being financially devastating. I also had a good support group so that if I became incapacitated, I would have someone to fall back on. I had the usual hemolytic anemia but did not go on rescue drugs, and had some trouble with my thyroid reacting to the interferon. Other than that, I was able to maintain a good attitude and completed treatment. Next month, I will be 2 1/2 years SVR. My liver enzymes are AST 14, ALT 15 and other than some pesky low thyroid issues, I am doing fantastic. I do not regret going through treatment and I feel confident the hep C is gone forever. I will be able to see my daughter graduate from high school and college (if she goes), start her own family and play with my grandbabies if she blesses my with them.
I don't take the little things for granted anymore and I am happy.
Your decision can only be made by you and I completely understand your dilemma. All I can advise is think of what is important to you, put it first, educate yourself (you seem to be doing a good job) and choose. Whatever your choice is will be respected by folks here. Treatment is not for everyone and everyone situation is different. If you decide to go for treatment, commit yourself fully or you are likely to quit. Good luck and good health. ((((((((((HUGS))))))))) ~MM
We haven't met before, but I'm an "oldie" here too. I'm a 3A and was stage 1, grade 1 with a 465,000 viral load. my initial AST was 75 and ALT was 65 and I'd had the hep C for about 5 years by the time I treated.
Like you, I explored every possible option I could think of (I think I may have invented a few) as I dreaded treatment and the possible long-lasting effects as I did the disease. -I'm a Paramedic and have seen several patients slowly die from liver failure. It is a miserable, awful and painful process and it is slow. Usually, in the last two years of the patient's life, they have little quality of life, take lactulose to absorb the ammonia building up in their blood. The lactulose gives them horrid smelling projectile diarrhea and their bellies swell from the water that gets trapped inside their abdominal cavity. When the fluid builds up too much (in later stages about every two weeks), they can't breathe because of the pressure on their diaphragm and have to have a large needle pierced into their abdomen to draw off the fluid. Eventually, the ammonia level gets too high, kills their kidneys, makes their brain swell, and they eventually go into a coma and die. Not a pretty picture. -And rarely do heppers get new livers because, by the time they need one, their bodies are too damaged to survive the transplant.
With this knowledge, I tried other things first. Sho-Saiko-To, the Japanese treatment for Hep C support immune system health and liver repair is something I tried for 6 months prior to treatment. My liver enzymes did drop and I had more energy, but my viral load didn't change much. Just before I made my decision, I even tried an experimental treatment -IV germanium infusion, which is still in the dog lab studies. It has had some promising results for abolishing cancerous liver tumors (in dogs) and, since all cancers are caused by viruses, it made sense that it could work on Hep C as well. With one dose, my viral load dropped from 465,000 to 16,000. I still wonder if I'd done a second dose, it it would have done in the hep C...
Anyhow, I decided to go ahead with treatment. I was in good health, my immune system was still strong, I was in early stages, and I was able to take time off work without it being financially devastating. I also had a good support group so that if I became incapacitated, I would have someone to fall back on. I had the usual hemolytic anemia but did not go on rescue drugs, and had some trouble with my thyroid reacting to the interferon. Other than that, I was able to maintain a good attitude and completed treatment. Next month, I will be 2 1/2 years SVR. My liver enzymes are AST 14, ALT 15 and other than some pesky low thyroid issues, I am doing fantastic. I do not regret going through treatment and I feel confident the hep C is gone forever. I will be able to see my daughter graduate from high school and college (if she goes), start her own family and play with my grandbabies if she blesses my with them.
I don't take the little things for granted anymore and I am happy.
Your decision can only be made by you and I completely understand your dilemma. All I can advise is think of what is important to you, put it first, educate yourself (you seem to be doing a good job) and choose. Whatever your choice is will be respected by folks here. Treatment is not for everyone and everyone situation is different. If you decide to go for treatment, commit yourself fully or you are likely to quit. Good luck and good health. ((((((((((HUGS))))))))) ~MM
I know how hard it is to listen to the advice that you are seeking. I too have had a wait and see attitude, still do, luckily I have entered a study and will be able to find out more. My disease progresssion last time checked was grade 1 stage 1, so i may have some time to wait, i will now see how much progression has occurred over the past 2 years I hope to get more answers and help with the study. Once you make the decision its a relief.
I guess what i'm trying to say is most peeps are scared, but if you can treat at this point, just try it you can always stop, and just that amount of treatment may give you some benefit. Who knows you may not have a hard time of it. Fear *****, the only way to conquer it is to meet it head on and take a stand for what you believe is the best choice. you will then meet the results of that choice either way.
I guess what i'm trying to say is most peeps are scared, but if you can treat at this point, just try it you can always stop, and just that amount of treatment may give you some benefit. Who knows you may not have a hard time of it. Fear *****, the only way to conquer it is to meet it head on and take a stand for what you believe is the best choice. you will then meet the results of that choice either way.
Please, listen to our members. You really don't have a choice/time is not
on your side now....treat....at least try? you can always stop please
think about it and try? Please
on your side now....treat....at least try? you can always stop please
think about it and try? Please
My doctor told me I had a disease and there was no guarantee the treatment would work. I thought about it and about end stage liver disease and liver transplants and it did not take long to decide to give it my best shot to get the disease OUT OF ME. It was not easy but not as hard as I thought it would be.
Many people (long timers here) have read your posts and your concerns that know a heck of a lot more than I do but the concensus seems to be treat now and if you can't handle it or you do not get a response then quit and wait for the new drugs.
Many people (long timers here) have read your posts and your concerns that know a heck of a lot more than I do but the concensus seems to be treat now and if you can't handle it or you do not get a response then quit and wait for the new drugs.
Sorry I'm just confused. Bottom line is it's not easy for any of us to do treatment. You seem to be making decisions on based on things you think you know. When the truth is you don't know anything about treatment because you've never done it. People who have done it,and are doing it are telling you about their experiences with tx. You say you want to get rid of the virus, but yet are unwilling to do what it takes to get rid of it. You could at least try it and if you find you can't handle it then that's that. Maybe you'll surprise yourself. Give yourself a chance !
I'm a stage 3/4, 72 wk relapser and waiting for the PI's. If you don't want to treat with the current SOC because you want better odds then wait for the PI's. Either way, both treatments are going to take you out you comfort zone and you just have to suck it up and keep moving forward. Living requires decison making all the time, some are more life altering than others but you have to get past the fear, reconcile things in your head and go down whatever path you think is best. Don't be your own worst enemy.
Trinity
Trinity
Streamline I have tried very hard to make sense to you over the course of this thread. You have a dire disease and your liver is almost gone past the point of no return. Whether you have had this disease for a year or twenty years - the damage has been done already and you are out of time.
There is really nothing more useful to add to the conversation. If you do not want to treat and do get to end stage liver disease, we have done every single thing to prevent this that is humanly possible - over over and over again.
It is quite frustrating to watch someone not 'get it'. I have seen people die from this and understand the ramifications of where you are. You do not yet seem to but I hope you do before it is too late.
I wish you were stage 2 or even a 3 and it didn't really matter but as a beginning cirrhotic who is not listening to sage advice, I'm sorry if you do not understand why this would irk some so much but I have given you the best advice possible. All of the others have too and said the same thing.
Now, one can only hope that you realize and do something about it because really there is nothing else to add.
There is really nothing more useful to add to the conversation. If you do not want to treat and do get to end stage liver disease, we have done every single thing to prevent this that is humanly possible - over over and over again.
It is quite frustrating to watch someone not 'get it'. I have seen people die from this and understand the ramifications of where you are. You do not yet seem to but I hope you do before it is too late.
I wish you were stage 2 or even a 3 and it didn't really matter but as a beginning cirrhotic who is not listening to sage advice, I'm sorry if you do not understand why this would irk some so much but I have given you the best advice possible. All of the others have too and said the same thing.
Now, one can only hope that you realize and do something about it because really there is nothing else to add.
Yes James that was how the first doctor approached me. With total scare tactics
NY Girl as far as agenda, you'll find none here. I'm just trying to do the best I can for myself. I think things through, maybe that doesn't seem normal to you. I'm sorry for that. I posted here because I'm scared yes. This is a life changing decision. At the point I start to treat my whole life will change and at my age that is not an easy thing to do. I just want to kill this virus the first time around. I'm sorry you're so much stronger then I am, but we are all different.
I put this in the back burner for two years because my health was good and I was feelng well. Well those things have changed and I am taking it seriously. I don't need the sarcasm. So please don't post if you don't have anything nice to say. So sorry I annoy you so much......
NY Girl as far as agenda, you'll find none here. I'm just trying to do the best I can for myself. I think things through, maybe that doesn't seem normal to you. I'm sorry for that. I posted here because I'm scared yes. This is a life changing decision. At the point I start to treat my whole life will change and at my age that is not an easy thing to do. I just want to kill this virus the first time around. I'm sorry you're so much stronger then I am, but we are all different.
I put this in the back burner for two years because my health was good and I was feelng well. Well those things have changed and I am taking it seriously. I don't need the sarcasm. So please don't post if you don't have anything nice to say. So sorry I annoy you so much......
James now that is truly the most interesting post in this entire thread. Why we try so hard and give so much time trying to help sometimes escapes me when I see things like that. Sometimes you just gotta wonder how much you are being played or what the agenda really is but just know we have done all we can at this point.
Interesting in another of you posts in a "so scared" thread you said in 2006 your doc told you that you have a year to live. Stange.
I've been diagnosed as stage 3-4, which is pretty close if not the same as you. I tx'd 88 weeks (gotcha by a few, Brent) and relapsed.
I see the appeal of waiting for telaprevir, but like nygirl said, there are no guarantees when it will come out. If you tx'd now, you're likely to give your liver a break even if you relapse, which would be a very good thing.
Another option is to tx for 4 weeks and see if you RVR, and quit if you don't. If I remember correctly, RVR on SOC has the same SVR percentage as telaprevir. If you do RVR on SOC, then you get to miss out on that lovely telaprevir rash.
smaug
I see the appeal of waiting for telaprevir, but like nygirl said, there are no guarantees when it will come out. If you tx'd now, you're likely to give your liver a break even if you relapse, which would be a very good thing.
Another option is to tx for 4 weeks and see if you RVR, and quit if you don't. If I remember correctly, RVR on SOC has the same SVR percentage as telaprevir. If you do RVR on SOC, then you get to miss out on that lovely telaprevir rash.
smaug
On May 3 2010. You said your Doc said you 4-5 years to live w/o treatment. Now he's telling you to wait 6 months for a drug that might not be approved ? Seems like your cutting it pretty close.
For me after my biopsy doc had a very serious tone, and told me I was stage 3, you should start treatment. Not a second past and I said "write the srip when can I start". I never could and never will be able to understand why people question treatment. It's not fun but it's doable ! If you would have started 6 months ago you be half way through ! But instead now you have 3 1/2 to 4 1/2 years to live.
Time to make some pancakes with extra butter for my RIBA. BTW I skied powder all morning on 12/6 in Breckenridge Colorado while going through treatment smiled hooted a laughed the whole time. You can do it !!
For me after my biopsy doc had a very serious tone, and told me I was stage 3, you should start treatment. Not a second past and I said "write the srip when can I start". I never could and never will be able to understand why people question treatment. It's not fun but it's doable ! If you would have started 6 months ago you be half way through ! But instead now you have 3 1/2 to 4 1/2 years to live.
Time to make some pancakes with extra butter for my RIBA. BTW I skied powder all morning on 12/6 in Breckenridge Colorado while going through treatment smiled hooted a laughed the whole time. You can do it !!
No you can not just add the drug, but I can try the SOC and stop if desired at 4 weeks and it will not hurt treatment with telaprevir is what my doctor has told me.
PS Got approval for echo...happy about that as they were denying......
Will have all interferon approval tests in place.
Both doctors said today very probably for spring/summer approval of telaprevir.....Let's keep our fingers crossed. If not for me, for those who really can wait....a cure is on the way......
PS Got approval for echo...happy about that as they were denying......
Will have all interferon approval tests in place.
Both doctors said today very probably for spring/summer approval of telaprevir.....Let's keep our fingers crossed. If not for me, for those who really can wait....a cure is on the way......
I've been hearing that they will be out since in joined this forum in 2005. Plus why would you add it at the end that is not the purpose of the medication at all - since there is no study done to determine this would have any effect I highly doubt any insurance company is going to just throw them out at you cause you hope it will make some difference. You are so afraid to do treatment now how in the world are you going to take an EXTRA medication on top of the SOC meds?
And what if they decide it's too late by then for you to treat and you need to transplant? I honestly am not sure what you are waiting for but you are ruining your chance at success not mine I SVRd years ago.
And what if they decide it's too late by then for you to treat and you need to transplant? I honestly am not sure what you are waiting for but you are ruining your chance at success not mine I SVRd years ago.
I'm thinking these drugs will be out in 9 months. So if I give myself 6 months and start treatment I can always add the drug at that point. Do you really think I will progress that much in 6 months and why does this doctor seem to be so positive that it will not progress that fast ???
Even with CC and a good responce isn't the treatment time still 48 weeks or longer??
Oh Geez I didn't mean to get you guys going again, but I do understand what you're saying.
Oh Geez I didn't mean to get you guys going again, but I do understand what you're saying.
PS When Orphanhawk posted this she believed you were in an EARLY stage of the disease NOT cirrhotic. You can ask her what she had to go through to get a transplant and just how far she had to go and how much she had to spend to accomplish this............this six month stuff is not applicable in your case at all. You have a chance of stopping the disease now - what will you do if the 'new' meds dont work on you and you are out of time? you realize they do not work for everyone?
"I'll give it 6 months which will get me through the holidays and the winter."
Oy vey.
"I'll give it 6 months which will get me through the holidays and the winter."
Oy vey.
Comment all you want, I truly love to hear opinions. I don't know if I'm making the right decisions all the time so you can say all and everything you feel I need to hear. This is going to be quite a trip not only physically but emotionally and financially. Maybe I think to much, but I will go for blood work in 4 month and then again at 6 months. The only thing I have to do is the cardiogram which will be a one time deal because they already refused me. I didn't appeal this time, but will the next time. If I have to I will pay out of pocket when the time comes. Sorry for rambling on......
I have given this so much thought and I really feel if the doctor suggests waiting for the new meds that 6 months is not going to matter that much and it could shorten my treatment time"
you have cirrhosis and your chance of success is hurt by that fact. NOBODY is sure that those meds will be out in six months........what will you do if you wait and find out they won't be out for a year and your cirrhosis has advanced passed the flash point?
I dont personally think you have any intention of treating or understanding how direly your situation is moving along but whatever it is your life and let us know how you are doing again in six months.
I can't believe you found any knowledgable doctor who would advise to watch and wait with cirrhosis but...........it's your decision to go against the personal advice of just about every person on this forum. I feel badly for you but really dont have anything further to say. You have a right to commit hari kari if you feel like it but I would not be gambling with my life like you are. NO way.
you have cirrhosis and your chance of success is hurt by that fact. NOBODY is sure that those meds will be out in six months........what will you do if you wait and find out they won't be out for a year and your cirrhosis has advanced passed the flash point?
I dont personally think you have any intention of treating or understanding how direly your situation is moving along but whatever it is your life and let us know how you are doing again in six months.
I can't believe you found any knowledgable doctor who would advise to watch and wait with cirrhosis but...........it's your decision to go against the personal advice of just about every person on this forum. I feel badly for you but really dont have anything further to say. You have a right to commit hari kari if you feel like it but I would not be gambling with my life like you are. NO way.
Sorry I didn't answer you thalessemia question. Yes of course he knows all my history. Thalessemia Minor means that I carry the gene, but I don't have the Anemia. I have never had a problem with it. I have always run a little anemic, but this is common with quite a few women. From what the doctor says the low platelets are the liver disease not coming from thalesemia minor, which is what I knew all a long as I never had low platelets come up in previous blood work pre hepc progression to liver disease. Does any of this make sense to you. Believe I try and make sense of all of it all the time. All I want to do is get into treatment, but the best for my situation, not to repeat myself......
I'm at a very good hospital with a very good doctor. My stage is early cirrhosis. My blood work has come back again stable. Everything is good but slightly elevated ast alt. Which is normal. My platelet count was actually up to 72 from 52. I have given this so much thought and I really feel if the doctor suggests waiting for the new meds that 6 months is not going to matter that much and it could shorten my treatment time, which will be much more doable both physically and financially. I'm trying to make the most best decision I can with my circumstances. I can start treatment at anytime, If I can put it off just a few more months and it's not out of fear, I given this much thought. I want the best possible chance to cure this virus in the shortest amount of time. The doctor doesn't seem to be worried about the platelets so much and the liver functions which he says are all good.
I just read some of your prior posts and see that you also have thalessemia minor. Does the doctor who is recommending that you wait know that? Is the liver doc working with a full set of records from your primary doc?
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