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.
I haven't seen any staging (biopsy) results if you have posted them. I would think that if your disease progression was still in early stages that you would be able to wait for telaprevir or boceprevir. If not, then it is a tough decision and one you will have to make personally with the assistance of your doctor.
Wishing you the best of luck,
Brent
Wishing you the best of luck,
Brent
All I can say is my heptalogist is advising people to wait for the new meds unless their livers are in poor shape.
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Perhaps you could give yourself a deadline, like if the new PI's aren't available in 6 months, you'll start treatment, then.
Try to find a way to give yourself peace of mind.
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Perhaps you could give yourself a deadline, like if the new PI's aren't available in 6 months, you'll start treatment, then.
Try to find a way to give yourself peace of mind.
I can’t imagine what you’re struggling over, Streamline. You have stage 3-4 fibrosis, your platelets are diminishing, and the window to undergo therapy is likely closing rapidly around you. If you fear possible side effects of interferon therapy, you should be terrified of end stage liver disease.
If it were me, I’d have some faith in my doctor. You seem to have trouble with critical thought; your doctor is trained in weighing risk/benefit and making these decisions for you.
You received some pretty good info from others in here previously; this is a list of your thread history to review:
http://www.medhelp.org/user_posts/list/1301567?personal_page_id=1382621
As well as one in particular that covers this topic in detail:
http://www.medhelp.org/posts/Hepatitis-C/paltete-question/show/1361741?personal_page_id=1382621#post_6217288
There isn’t much anyone can do to remove your fears; you’re going to have to take the initiative and dive in. For what it’s worth, I didn’t find treatment too awful; I got tired and grumpy towards the finish line, but I’d do it again in a heartbeat if it was necessary.
If you try and eventually fail, which is a real possibility given your genotype and degree of liver damage, you can try again later when/if new meds are available. In the meantime, you might surprise yourself and beat this before any new interventions are available.
Right now you have options; if you continue to delay, those options are likely to diminish.
Good luck,
--Bill
If it were me, I’d have some faith in my doctor. You seem to have trouble with critical thought; your doctor is trained in weighing risk/benefit and making these decisions for you.
You received some pretty good info from others in here previously; this is a list of your thread history to review:
http://www.medhelp.org/user_posts/list/1301567?personal_page_id=1382621
As well as one in particular that covers this topic in detail:
http://www.medhelp.org/posts/Hepatitis-C/paltete-question/show/1361741?personal_page_id=1382621#post_6217288
There isn’t much anyone can do to remove your fears; you’re going to have to take the initiative and dive in. For what it’s worth, I didn’t find treatment too awful; I got tired and grumpy towards the finish line, but I’d do it again in a heartbeat if it was necessary.
If you try and eventually fail, which is a real possibility given your genotype and degree of liver damage, you can try again later when/if new meds are available. In the meantime, you might surprise yourself and beat this before any new interventions are available.
Right now you have options; if you continue to delay, those options are likely to diminish.
Good luck,
--Bill
I did not realize where your disease stage was currently. Waiting is for those with early stages (1 & 2). It certainly sounds to me like time is critical and I would not waste it!
If it is fear of the treatment, don't be afraid. It is not all the bad. We joke around with gallows humor like it is "hell", but really it is just like a long case of mile flu for the most part. The alternative is much more grisly.
I treated for 84 weeks (Bill is the only one I know that treated longer) and relapsed, but it reversed my fibrosis by one stage and bought me time to wait so I can take advantage of the new PI drugs. The same might happen for you. You definitely do not want to wait around while you advance to ESLD.
Brent
If it is fear of the treatment, don't be afraid. It is not all the bad. We joke around with gallows humor like it is "hell", but really it is just like a long case of mile flu for the most part. The alternative is much more grisly.
I treated for 84 weeks (Bill is the only one I know that treated longer) and relapsed, but it reversed my fibrosis by one stage and bought me time to wait so I can take advantage of the new PI drugs. The same might happen for you. You definitely do not want to wait around while you advance to ESLD.
Brent
Instead of thinking about the side effects of treatment, you should be thinking about the possibility of helping heal your liver and getting your health back. Do you want to try to get your health back or would you prefer to give up on yourself and die the long, slow, painful process of end stage liver disease? Seems like an easy choice to me.
Diane
Diane
I agree about jumping into tx sooner rather than later. The new drugs seem to be ready for release soon, but there is no definitive timetable to count on. I was dx'd with cirrhosis in Nov. 2008 and started tx in Jan. 2009. I went the full 72 weeks as recommended by my Dr. I was undetecable by 12 weeks, but not 4 weeks. Was still UND 3 months post, so regardless if I reach SVR, I know that I gave my liver a tremendous break from the virus - by at least 17months (and counting). An added bonus is that some of the pre tx symptoms have disappeared or lessened to a great degree, most noticeable the fatigue and cryo-related issues.
Time is of the essence with the late stages and really, the choice is pretty well laid out for you. I remember exactly what I was feeling when I was in your shoes a couple years back - scared spitless - so I understand your quandry. But, I gotta tell you, once I agreed to it, the burden of choice was lifted and my focus directed towards healing. Still scary, can't buffalo about that, but I felt I could finally DO something about my dx instead of worrying about it. That transition was amazing!
Time is of the essence with the late stages and really, the choice is pretty well laid out for you. I remember exactly what I was feeling when I was in your shoes a couple years back - scared spitless - so I understand your quandry. But, I gotta tell you, once I agreed to it, the burden of choice was lifted and my focus directed towards healing. Still scary, can't buffalo about that, but I felt I could finally DO something about my dx instead of worrying about it. That transition was amazing!
Streamline if you have ever seen what happens to someone who dies of end stage liver disease you would realize just how worrying about side effects and things is just absolutely nothing, at all.
Treatment isn't fun but it is doable. If you had advanced cancer would you still be contemplating treatment? You have advanced liver disease and every day that goes by your chances diminish as the cirrhosis gets a more firm hold on that liver of yours.
I did 72 weeks and made it through. If you treat now and are not successful at least perhaps you have saved yourself enough time to wait to see if/when the new drugs come out. They have been 'coming out' and 'near FDA submittal' for a long time. If you save yourself some liver time then should treatment not work you always have them as a backup. But I'm sorry your time is running out now it's time to get this disease taken care of before it is too late.
Treatment isn't fun but it is doable. If you had advanced cancer would you still be contemplating treatment? You have advanced liver disease and every day that goes by your chances diminish as the cirrhosis gets a more firm hold on that liver of yours.
I did 72 weeks and made it through. If you treat now and are not successful at least perhaps you have saved yourself enough time to wait to see if/when the new drugs come out. They have been 'coming out' and 'near FDA submittal' for a long time. If you save yourself some liver time then should treatment not work you always have them as a backup. But I'm sorry your time is running out now it's time to get this disease taken care of before it is too late.
If you have the choice, you have a doctor, you can get the meds and the care, and you are at this stage of liver disease, go for it. If you cant take it you can stop, but from what I've seen here even that may help your liver.
I'm not treating yet, but my last biopsy showed stage 1, and I dont know how financially I could do it w/o insurance etc.
I dont know what your situation is, but you are at a late stage and if you can, go for it, and see.
Good luck, please let us know.
M4now
I'm not treating yet, but my last biopsy showed stage 1, and I dont know how financially I could do it w/o insurance etc.
I dont know what your situation is, but you are at a late stage and if you can, go for it, and see.
Good luck, please let us know.
M4now
streamline:
Just get ready, and take the leap. You can't float or choke if you don't even get in the water. If you take the plunge you can always resurface, but if you don't, you'll be sure to be left high and dry. Start treading the waters while both feet can still move. Don't let yourself let the ground get pulled from underneath you. Best wishes moving forward.
Just get ready, and take the leap. You can't float or choke if you don't even get in the water. If you take the plunge you can always resurface, but if you don't, you'll be sure to be left high and dry. Start treading the waters while both feet can still move. Don't let yourself let the ground get pulled from underneath you. Best wishes moving forward.
All appointments in place this month for clearance to start treatment...I'll keep the forum updated. I know my time is running out, I feel it everyday. I'll keep the forum updated as to the progress I''m making....
Thanks.....
Thanks.....
I think you’re heading in the right direction, streamline. Keep the burden on the doctor; make sure that nothing sits in your inbox or to-do list, and that any waiting is on their shoulders, not yours. Keep up with all appointments, and have faith that the doctors have your best interest at heart.
The folks in here will support you as best they can; many people have told me that this waiting period you’re currently in is the worst part of it all, and that once they actually get started it’s much easier.
Best of luck to you; let us know how things proceed,
Bill
The folks in here will support you as best they can; many people have told me that this waiting period you’re currently in is the worst part of it all, and that once they actually get started it’s much easier.
Best of luck to you; let us know how things proceed,
Bill
Hi there, I believe this is the first time we've met. I'm an oldie from this group and I must admit that I admire the time you've spent debating over this matter. I agree with Bill that you are definitely heading the right direction whatever your decision may be.
I was diagnosed at age 15. It was denial at first, but as adolescent started to set in, I had to take my future into consideration. I was in college away from home and it finally hit me that I had to make a choice about what to do. I wasn't very familiar with the disease at the time and thought it could be transmitted by drinking out of the same cup as other people. Not knowing things definitely made me even more afraid. I've seen probably all the well known liver doctors in this state, many have insisted that I do a liver biopsy just to see how far the damage has gone bc it was speculated that I had received hcv during a transfusion as an infant. But I felt like I would want a future free of worry about this disease, why should I wait for the disease to get worse to treat? Wouldn't it be too late? Also what if the new medications have some not identified side effects that would affect me permanently?People have also said that the younger you treat, the better you are able to cope with the side effects. I am also planning to go to graduate school, have a family and children. I didn't want my future to be hampered by hcv. So I took the plunge in 2009 (oh gosh it seems so far away!) was it 2009? I can hardly remember. Trust me when I say this: you should be as prepared as you can but you are never prepared enough for the real thing. First month was great. I went from about 5 mil counts to only 26! The drugs definitely worked wonders but was also wrecking havoc on my bone marrow, I was on rescue injections throughout the rest of my 48 weeks of treatment in addition to other issues. So I guess in my case, being young and treating didn't necessarily prevent me from having more side effects. It is important to realize that everyone is different. Treating became incorporated into my life for a little more than a year. After that, I didn't know what would be next, I was lost! My first 6 mo post treatment pcr came back undetectable. I can't even remember if I did a 1 year pcr, but I'm always so nervous about pcr's!
I felt like I lost a part of myself during treatment. It was the hardest thing I've encountered in life thus far. I've lost many friends because they never understood what I was going through. Getting back to life is honestly harder than I thought it would be. But I will tell you that I do not regret making this choice to treat. Life has no guarantees I realized, even if you feel like you can't trust yourself, you must, because during times like these, no one will understand you better than yourself.
To help you make your decision it is absolutely vital to find the appropriate physician. Get second or even third opinions until you are comfortable with the choices you are offered. I am writing this not to sway your vote on whether to treat or not, but to hopefully make you feel more confidence about the choice you make. Whatever decision you make, I know it will be for the best.
I was diagnosed at age 15. It was denial at first, but as adolescent started to set in, I had to take my future into consideration. I was in college away from home and it finally hit me that I had to make a choice about what to do. I wasn't very familiar with the disease at the time and thought it could be transmitted by drinking out of the same cup as other people. Not knowing things definitely made me even more afraid. I've seen probably all the well known liver doctors in this state, many have insisted that I do a liver biopsy just to see how far the damage has gone bc it was speculated that I had received hcv during a transfusion as an infant. But I felt like I would want a future free of worry about this disease, why should I wait for the disease to get worse to treat? Wouldn't it be too late? Also what if the new medications have some not identified side effects that would affect me permanently?People have also said that the younger you treat, the better you are able to cope with the side effects. I am also planning to go to graduate school, have a family and children. I didn't want my future to be hampered by hcv. So I took the plunge in 2009 (oh gosh it seems so far away!) was it 2009? I can hardly remember. Trust me when I say this: you should be as prepared as you can but you are never prepared enough for the real thing. First month was great. I went from about 5 mil counts to only 26! The drugs definitely worked wonders but was also wrecking havoc on my bone marrow, I was on rescue injections throughout the rest of my 48 weeks of treatment in addition to other issues. So I guess in my case, being young and treating didn't necessarily prevent me from having more side effects. It is important to realize that everyone is different. Treating became incorporated into my life for a little more than a year. After that, I didn't know what would be next, I was lost! My first 6 mo post treatment pcr came back undetectable. I can't even remember if I did a 1 year pcr, but I'm always so nervous about pcr's!
I felt like I lost a part of myself during treatment. It was the hardest thing I've encountered in life thus far. I've lost many friends because they never understood what I was going through. Getting back to life is honestly harder than I thought it would be. But I will tell you that I do not regret making this choice to treat. Life has no guarantees I realized, even if you feel like you can't trust yourself, you must, because during times like these, no one will understand you better than yourself.
To help you make your decision it is absolutely vital to find the appropriate physician. Get second or even third opinions until you are comfortable with the choices you are offered. I am writing this not to sway your vote on whether to treat or not, but to hopefully make you feel more confidence about the choice you make. Whatever decision you make, I know it will be for the best.
All the advise I have received here has been wonderful. As you all know this is a lonely disease so hearing from everyone has done wonders for me. I'm going along with my plans, but I'll tell you a month can seem like a year as you wait for all the appointment that are necessary.
Thanks any and all advise is always appreciated.
Thanks any and all advise is always appreciated.
Good for you!
Go forward and we will be here supporting you and rooting for your success !
Go forward and we will be here supporting you and rooting for your success !
My second opinion suggested I wait for the new meds. So that is what I am considering doing unless something changes and he suggests otherwise.
Was just re-reading all the post. My liver is early cirrhosis but my liver functions are all still good. What you posted was how I have been thinking. I'll give it 6 months which will get me through the holidays and the winter. I'll have my 6 month check up of liver functions and talk to my hep doc about starting SOC this way if the telaprevir is close to being on the market I can add it. It will cut my treatment time if they release it and if they don't I can just continue on with SOC. My doctor doesn't think 6 months will change much.
By the way my results from the IL28b gene test came out cc. Was nice to hear some good news.......I wish the same for everyone......
By the way my results from the IL28b gene test came out cc. Was nice to hear some good news.......I wish the same for everyone......
CC allele? Treat now, regardless of genetics. If you get a less than ideal response at 12 weeks, rethink then. You might be finished and achieve SVR by the time any protease inhibitors are released and approved. I think if you’re honest with yourself, you’ll realize waiting for other drugs is another delay tactic, and I don’t think this serves you well.
--Bill
--Bill
What is your strategy for your already deficient platelets, one of the greatest risks to treatment?
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?
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.
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 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.
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......
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