Sobering News

[jmjm530]

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

[Dale_Ray]

Everyday I say that and reflect on what I have been blessed with through my life. If I couldn't look back on all the wonderful people who have been in my life I don't believe I could be looking forward. A lot of sad news lately with forum friends and relapses. I'm determined that once my 48 weeks are completed and the sides are gone then I want to just make the best of what I have left and Snowave I hope you live to be 150 years old and mine is the last smiling face you see. Anyway I just wanted to say that you are right about counting your many blessings one by one. Dale (grumpy)

[Listen2soul]

Just a quick thought for everyone, because it's late and I want to go and meditate.  But for your sake please check website at "lipoic berkson".  That's a good start.  I think it's a Godsend, and it's been around - just quietly around.  Wishing you all His very best always.

[Mister beagle bailey]

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

[strator]

It's true what you said about being able to come here.
We all have to get across the river by ourselves to a point, but man is it nice to find a spot on the river where others have built a bridge.
Don

[can-do-man]

Honey says....We are all so very thankful for is that we have found each other and can have fun and cut up and on the otherhand,,,,come here to complain or cry. We all understand what each is going through. Its a real Blessing to have this board for us all to meet. Best you can do,,,,think positive and keep saying each day,,,,I will be SVR!!!


Very well put honey.

Hope your having a good day. "honey"

[honey11]

You guys,,,I'm sorry to see that some are relapsing!!  The wonderful thing would be for everyone of us to clear and each day be a celebration of SVR!  Yes,,,it can be a downer when on the meds and trying to stick it out and be positive when you are on something that already has you more depressed then usual.  Its true,,,we all knew going into this tx,,,that not everyone would clear.  But we did know that if we didn't clear,,,,,,we were helping the good ole liver function better!  That is definitely a postive,,,,moving back a stage.  Tony did tx 3 times and I honestly felt that each time he treated,,,moved back a stage so last round was easier to kill it for good!  

Honestly,,,,I know too well,,,,the frustration and anxiety of the waiting game.  On the good days of tx,,,,,you enjoy your day to the most.  On the bad days,,,,Try to be that day with someone positive or someone that makes you feel good to be with.  Do something you really enjoy,,,even if feeling bad,,,,rent one of your all time favorite movies.  Eat something that you love and have a craving for.  Make the most of it as tomorrow will be better!   Another thing,,,,,We are all so very thankful for is that we have found each other and can have fun and cut up and on the otherhand,,,,come here to complain or cry.  We all understand what each is going through.  Its a real Blessing to have this board for us all to meet.  Best you can do,,,,think positive and keep saying each day,,,,I will be SVR!!!

[can-do-man]

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

[can-do-man]

Do me a favor, let me know when you build that bridge ok. Save me a whole lot of work. Thanks, once again strator to the rescue.

[NYgirl]

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.

[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

[can-do-man]

we must be the early birds here

[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

[can-do-man]

morning dyce, hope all's well

[dyce]

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

[Mister beagle bailey]

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

[strator]

Jim, Great post and thread on a tough subject. It

[can-do-man]

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%

[kespr]

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.

[dodger1]

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

[jmjm530]

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

[SJL]

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

[wMich]

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

[genedog]

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

[dyce]

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