Aa
Sobering News
Like "cgd", I also have been struck by the bad news lately.
For some time, it seemed as if we were defying the odds with one SVR after another. But lately, the numbers seem to be catching up to the group, with one heart-breaking story after another. As someone nearing the end of treatment, this is very sobering. A reminder that no matter what we do -- at least as a group -- our odds of being cured are still only around 50-50.
I take a couple of things away from this. First, as individuals we should do everything we reasonably can to improve the odds, whether it be earlier PCR's, off-label dosing when sensible, extended treatment, more proactive use of rescue drugs, agressive treatment of sides, etc. In short, we should all work to become better Hep C consumers, working with your medical team in a real partnership.
And second, in spite of our best efforts, a certain percentage of us are going to fail to reach SVR, for reasons in many cases unknown to the medical community. It's something we all have to deal with, and especially so when making treatment decisions -- weighing the risks of the treatment drugs against the rewards (and odds) of being cured.
And lastly, those inclined should should send a prayer to everyone involved in hep c research, especially those working on some of the promising new drugs in the pipeline. 50-50 is still the best odds we've ever had -- but we still have so far to go.
My heart goes out to those who recently relapsed. My prayers for their future victory, and for the victory of those treating now or about to treat.
-- Jim
For some time, it seemed as if we were defying the odds with one SVR after another. But lately, the numbers seem to be catching up to the group, with one heart-breaking story after another. As someone nearing the end of treatment, this is very sobering. A reminder that no matter what we do -- at least as a group -- our odds of being cured are still only around 50-50.
I take a couple of things away from this. First, as individuals we should do everything we reasonably can to improve the odds, whether it be earlier PCR's, off-label dosing when sensible, extended treatment, more proactive use of rescue drugs, agressive treatment of sides, etc. In short, we should all work to become better Hep C consumers, working with your medical team in a real partnership.
And second, in spite of our best efforts, a certain percentage of us are going to fail to reach SVR, for reasons in many cases unknown to the medical community. It's something we all have to deal with, and especially so when making treatment decisions -- weighing the risks of the treatment drugs against the rewards (and odds) of being cured.
And lastly, those inclined should should send a prayer to everyone involved in hep c research, especially those working on some of the promising new drugs in the pipeline. 50-50 is still the best odds we've ever had -- but we still have so far to go.
My heart goes out to those who recently relapsed. My prayers for their future victory, and for the victory of those treating now or about to treat.
-- Jim
Wow, strong words.....Sobering to say the least. This hits home very, very hard for me right now.. This week I went to get my 6 month post PCR, and now I sit here playing the game... Like a craps player, waiting to see how the dice come to rest. Did I hit, or did I **** out? I was supposed to get my PCR done a few weeks ago, but I just kept putting it off. I kept coming up with excuses, and reasons not to go. Well, Friday I buckled up and went to the lab. I need to know, I can't run from life!
I was clear at 3 months post, but I no there is no gaurantees. Over the past few years on the forums, the one thing that has been etched in my mind the deepest, Is THERE IS NO GAURANTEES!
We all just fight the fight, and play the odds. Like Jim said, 50/50 is still good odds, and it's all we have right now. I pray for better meds, better odds, and for those that do not have the time to wait. Those that are forced to fend for their lives with the only avaible means to SVR, combo tx. Lives can be won, or destroyed by just the simple flip of a coin. Thats all it is, a flip of a coin!! Heads, SVR...Tails, relapse..
But thats life and we have to be satisfied that we are fortunate enough to have such HIGH odds. Cancer patients go into chemo, with as low as 10, maybe 15% chance of eradiction.
That 50% we have sure looks good to me right about now.
Now, back to my game of waiting....Waiting to see what card life is gonna deal me!
I was clear at 3 months post, but I no there is no gaurantees. Over the past few years on the forums, the one thing that has been etched in my mind the deepest, Is THERE IS NO GAURANTEES!
We all just fight the fight, and play the odds. Like Jim said, 50/50 is still good odds, and it's all we have right now. I pray for better meds, better odds, and for those that do not have the time to wait. Those that are forced to fend for their lives with the only avaible means to SVR, combo tx. Lives can be won, or destroyed by just the simple flip of a coin. Thats all it is, a flip of a coin!! Heads, SVR...Tails, relapse..
But thats life and we have to be satisfied that we are fortunate enough to have such HIGH odds. Cancer patients go into chemo, with as low as 10, maybe 15% chance of eradiction.
That 50% we have sure looks good to me right about now.
Now, back to my game of waiting....Waiting to see what card life is gonna deal me!
Good luck to ya, and as you say 50% odds are alot better then alot of people have. My hepo took me on a tour of the cancer ward a while back. It was a wake up call for me. Seen alot of people who would gladly change places with me.
I feel I have lived a happy and blessed life and have already got more out of this life than I deserve. No stress one way or the other if I svr or not I am feeling better than I have in years so I will enjoy life in the now. 9 weeks post TX Peace Out
I hope when I grow up (only 59 now LOL) I'll have your wonderful attitude. Meanwhile, sleeping a little less at night :) Maybe you want to elaborate a little more on where your life philosophy comes from. Thanks for the reminder.
-- Jim
-- Jim
It is so very difficult to read about problems for those who have given so much to clearing this bug - whether that is a dissappointing 12/24 wk pcr, a breakthrough, or a relapse.
Much of this is out of our hands, but I think we need to take control over those few things we can. For exmaple, different doctors have different opinions about so many aspects of treating this disease. There is no set of 'right' answers. I think Jim used the word 'consumers' - but the point is it's incumbent upon us to know our treatments inside and out. Taking charge of your treatment and working in conjunction with your doctors is imperative, IMO.
One place I could put more effort is my diet. It's probably healthier than the average Joe, but there's still room for improvement. I could stand to boost my intake of veggies. And to cut down on processed sugar. I believe that any edge I can give my immune system is an advantage I should take right now.
Any compliance with the meds. That's a no brainer, right?
Much of this is out of our hands, but I think we need to take control over those few things we can. For exmaple, different doctors have different opinions about so many aspects of treating this disease. There is no set of 'right' answers. I think Jim used the word 'consumers' - but the point is it's incumbent upon us to know our treatments inside and out. Taking charge of your treatment and working in conjunction with your doctors is imperative, IMO.
One place I could put more effort is my diet. It's probably healthier than the average Joe, but there's still room for improvement. I could stand to boost my intake of veggies. And to cut down on processed sugar. I believe that any edge I can give my immune system is an advantage I should take right now.
Any compliance with the meds. That's a no brainer, right?
says....I feel I have lived a happy and blessed life and have already got more out of this life than I deserve.
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I agree with you up to a point. I have 2 little grandsons that are my best buddies. One of them has already had a tough go at it with health problems. They need their papa as much as i need them. So sometimes its not always just about us. Best of luck to you on getting SVR. Take care and be careful out there its a crazy ole world.
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I agree with you up to a point. I have 2 little grandsons that are my best buddies. One of them has already had a tough go at it with health problems. They need their papa as much as i need them. So sometimes its not always just about us. Best of luck to you on getting SVR. Take care and be careful out there its a crazy ole world.
Without a doubt alot of letdown pcr's lately. It's heart wrenching to hear and see this news come out. One thing I always try to remember ,if I don't beat this clean out of me ,I'll buy time and give my liver a much needed break from the hcv. I thank God everyday I'm only stage 0 but many here are not and we can only pray the new drugs will be here soon.
Dyce
Dyce
best of luck to you 50/50 chance you will beat the bug, hell when me and you started i was in the pole Position your still in the race so my money is on you buddy, at least i got 55 laps in
Jim, Thank you for restating the realities. To hear about relapses and non-responders is disheartening stuff to me too and I feel for those who struggle. Recovery rates are what they are and I could soon be in that boat myself. I have gone from unwavering stoicism to whistling in the dark and back in my 33 weeks in Tx but neither extreme seems to serve me well. I need the reminders to keep my expectations in check. Your way of sharing knowledge and compassion without undue drama or condecension is surely appreciated. Also, please pardon my ignorance here but I was wondering what you meant by "off-label dosing" and the circumstances might this be sensible.
Regards,
- Lee in balmy! MI
Regards,
- Lee in balmy! MI
No one could express it better than you have. I have you all in my daily prayers and Jim I am positive that you are going to clear. As I have said before I went into this blind, I would hope to say only because I was so schocked. I feel I wasted the first 48 wks. of treatment because I was totally ignorant of the disease. It is so important that before we rush into any treatment that we have done our research,"interviewed" Doctors, making it more like a hiring process on our side. We all know, now, that this is a horrible disease to get rid off & it takes a whole team of Doctors, families,and friends to support us. This web-site has offered me so much information and compassion, just knowing that you all are only a few typed words away. The relapse rate does seem extremely balanced to one side now & I know that I would have handled things differently, had I the knowledge that I have gained throughout this. Diet & exercise became a thing of the past for me and I am sure this is most important. The "hiring" of the Doctor is essential to get the right person to work with. I have relapsed twice and I am still willing to try almost anything to get rid of hep c. I was jest recently turned down from the second clinical trial for Vertex, VX-950 therapy. My family is truly excited that I was turned down, on the other hand I am saddened. My expectations were high that I could participate and even though it might not have helped me at least research was being done. But-having done my home-work, I knew that were not accepting chirrosis participants.( for the life of me I cannot remember how to spell).
Let's all keep our heads up & remain positive that we do have the opportunity to beat the odds and also that there are several new drugs coming down the highway. I thank you all for listening, as I needed to write this as much for myself as for anyone else. Throughout this period of my life I have come to the realization that their is no fair or unfair in life, only happenings and how we handle them. God bless you all and to those waiting to hear their outcomes, I wish only the best for you.
Sandy
Sandy
Let's all keep our heads up & remain positive that we do have the opportunity to beat the odds and also that there are several new drugs coming down the highway. I thank you all for listening, as I needed to write this as much for myself as for anyone else. Throughout this period of my life I have come to the realization that their is no fair or unfair in life, only happenings and how we handle them. God bless you all and to those waiting to hear their outcomes, I wish only the best for you.
Sandy
Sandy
I'm using the term "off-label" in the sense where a drug is used for reasons (or in dosages) other than recommended by the manufacturer, i.e. on the "label".
For example, Pegasys is prescribed at 180 ug/week according to "label" yet some doctors use higher doses in selected patients, usually in the beginning of treatment. Conversely, some doctors use a lower mainteance dose if treatment fails, to try and retard fibrosis progression. Same with Ribavirin with some doctors prescribing higher doses than originally specified. Likewise, I don't believe Procrit or Neupogen is labled for Hep C (may be wrong on this) but most progressive docs use it when needed and their popularity and efficacy has earned them the moniker "rescue drugs".
A lot of physicians -- usually those less experienced -- are sometimes uncomfortable with off-label drug use, but the Food and Drug Administration (FDA) permits doctors to prescribe medications for other than the use they were originally intended. The better and more experienced doctors do when appropriate.
-- Jim
For example, Pegasys is prescribed at 180 ug/week according to "label" yet some doctors use higher doses in selected patients, usually in the beginning of treatment. Conversely, some doctors use a lower mainteance dose if treatment fails, to try and retard fibrosis progression. Same with Ribavirin with some doctors prescribing higher doses than originally specified. Likewise, I don't believe Procrit or Neupogen is labled for Hep C (may be wrong on this) but most progressive docs use it when needed and their popularity and efficacy has earned them the moniker "rescue drugs".
A lot of physicians -- usually those less experienced -- are sometimes uncomfortable with off-label drug use, but the Food and Drug Administration (FDA) permits doctors to prescribe medications for other than the use they were originally intended. The better and more experienced doctors do when appropriate.
-- Jim
I agree on what your saying. I think it is in god's hands if you are going to become svr or not. We do everything we are suppose to do. Shot's on time and riba everyday. I am scared also. I have 9 more weeks to go and I worry about relapse also because I can't do this again. I will wait until something new comes out on the market. It is a horrible thing to go threw this treatment and then relapse. My heart goes out to those who relapse. Best of luck to you Jim! I noticed you have extended your treatment. I will be praying for you! Sheila
I look at it that I just lost a batle but I,m not going to lose the war. I hope for nothing but the best for you as you near completion and all those other people also nearing the end of tx.
Yes jim your right. Seems lately alot of sad news, As a stage 4 its been on my mind more the closer i get to my 12 week pcr. But as dodger1 said not much we can do about it. Give it our best shot and hope were in the 50% that do clear. I think from all i've read if things keep going well with these new drugs were only 3 years, maybe 4 from beating this. So for alot of people time is on their side.
I try to think the 50 50 chance is like a glass of water half full or half empty. Half full sounds better. Good luck to you my friend, i do think your odds are better then 50%
I try to think the 50 50 chance is like a glass of water half full or half empty. Half full sounds better. Good luck to you my friend, i do think your odds are better then 50%
Jim, you couldn't have said it better. There has been much sad news on PCRs and relapse, but the one thing here that will never waver is the brother and sisterhood we all share. Some how we will all get through this with the help of new drugs,etc. and the support we get from each other. If we have to move heaven and earth to get to the cure so be it. Just believe it will be found and pray for all those with HVC, the researchers, Doctors and all others involved. More important pray for the one person who is out there now and doesn't know that he or she will soon find the key to unlock the door to a cure for all.
Being a 2B with a HGB of 7.7 and not knowing what will happen next with my treatment or if I will be able to finish, I pray to God for the help and answers for all.
Beagle
Being a 2B with a HGB of 7.7 and not knowing what will happen next with my treatment or if I will be able to finish, I pray to God for the help and answers for all.
Beagle
Good morning beagel. It.s rainin here at 5.35a.m.and I can here the robins cherpin outside. How is it goin today? Shot 11 tonite ha, your almost 1/2 way there. On the procrit, thier raising it tmarrow for your hmg right? I'm sure it will come up, look how it worked for muaka.
Keep your head up. your gonna be fine.
Dyce
Keep your head up. your gonna be fine.
Dyce
I'm doin good there. It's rainin here but it's 60 degrees and the robins are a cherpin. The sx's arenot near as bad this 2nd rd. of pegasy. the chills and high fever did't get me this trip.
Ha I'm not feelin to bad this mornin and even though I'm on the meds, I still got the love machine turnin if ya know what I mean.
Hope your good today,
Dyce
Ha I'm not feelin to bad this mornin and even though I'm on the meds, I still got the love machine turnin if ya know what I mean.
Hope your good today,
Dyce
Hows your ears after the bowling trip with the grandboy? My ears a times seem real sensitive to noise lately especially when my kids are fightin and arguing.
Dyce
Dyce
I just watched the 1983 movie The Day After. It put a lot of things in perspective for me.
As hard as we try to beat this disease and refuse to go idly into the night - some things are truly out of our control and we are left with the devastation and to pick up the pieces.
However, in treatment even without SVR we can give our livers a chance to recover a bit. By learning as much as we can in places like this = and talking together and encouraging each other = we can learn to live healthier and therefore improving the quality of our lives.
With each other we have formed a bond of strength. At times when it feels to hard - another always comes along and says "I will help carry your burden, I understand".
There are precious gifts in this disease believe it or not and that is one of them. If anything I've learned the quality of PEOPLE is much higher than I've ever imagined.
If that is what I carry out of this if I do not achieve SVR - I don't regret one minute of it.
My prayers are with you ALL.
As hard as we try to beat this disease and refuse to go idly into the night - some things are truly out of our control and we are left with the devastation and to pick up the pieces.
However, in treatment even without SVR we can give our livers a chance to recover a bit. By learning as much as we can in places like this = and talking together and encouraging each other = we can learn to live healthier and therefore improving the quality of our lives.
With each other we have formed a bond of strength. At times when it feels to hard - another always comes along and says "I will help carry your burden, I understand".
There are precious gifts in this disease believe it or not and that is one of them. If anything I've learned the quality of PEOPLE is much higher than I've ever imagined.
If that is what I carry out of this if I do not achieve SVR - I don't regret one minute of it.
My prayers are with you ALL.
Thanks for asking, glad your second shot was better. I told you the first is always the worse and now your pass that. How are your sx and how are you doing?
Beagle
Beagle
Yeah i've seem to be more sensitive to noise lately, plus the running around yesterday by the kids. About 40 of them just being kids though. kept turning my head alot, hearing kids yelling papa. 99% of the time wasn't even mine. Next saturday its a double header. Bowling first then pee wee basketball. YIPPEE
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