Aa
Treatment Ended at Week 54
Last riba, this past Wednesday night. Last shot of Peg and Procrit, the Wednesday before. That makes 54-weeks total, or 48-weeks past being non-detectible. Very difficult decision to stop -- agonizing at times -- because I felt I could go longer. But no studies, data, and only one out of six medical opinions supported do so. The majority, including several well-known hepatologists, recommended 48-weeks based on my RVR at week 6. My treating doctor, wanted the 48-weeks past non-detectible based on age and histology but left the decision to me.
It's a tremendous relief to finally be off these drugs. Tremendous. The fear of relapse, which made it so difficult to stop, interestingly disappeared as soon as the decision was made.
Whether tx ends in SVR or not, I feel I did all I reasonably could and therefore am at peace, happy, excited, and yes, feeling victorious. It has been a long, hard haul. Let me repeat that, a long, hard haul :)
While tired and a little beat up, at the same time I'm ironically ending treatment in the best shape I've been in since week 1. I therefore truly hope that I've been spared any permanent sides but do have a strong suspicion that treating this ole' body any longer might be pushing my luck in that regard.
If so inclined, keep me in your prayers for SVR as I will keep you in mine. But as someone wiser than me once said -- In life, it's the quality of the process that really counts, not the results.
-- Jim
----------------------------------
Male, age 59, geno 1b, pre-tx viral load 1.5 million, non-detec week 6, treated 54 weeks total.
It's a tremendous relief to finally be off these drugs. Tremendous. The fear of relapse, which made it so difficult to stop, interestingly disappeared as soon as the decision was made.
Whether tx ends in SVR or not, I feel I did all I reasonably could and therefore am at peace, happy, excited, and yes, feeling victorious. It has been a long, hard haul. Let me repeat that, a long, hard haul :)
While tired and a little beat up, at the same time I'm ironically ending treatment in the best shape I've been in since week 1. I therefore truly hope that I've been spared any permanent sides but do have a strong suspicion that treating this ole' body any longer might be pushing my luck in that regard.
If so inclined, keep me in your prayers for SVR as I will keep you in mine. But as someone wiser than me once said -- In life, it's the quality of the process that really counts, not the results.
-- Jim
----------------------------------
Male, age 59, geno 1b, pre-tx viral load 1.5 million, non-detec week 6, treated 54 weeks total.
God bless you Jim. I've only been here a little while (4/48) and you have been a HUGH inspiration to me. Your knowledge and your courage are something to be amazed by not to mention your sense of humor through all of this. Best of luck and best of health to you. Congraulations and keep us posted!
Congratulations on completing the long journey of tx for this dreaded virus. I will pray svr for you and you really deserve it! It had to weigh heavily on you knowing you've had this all thease years. You've fought a courages fight my friend and now your undetectable with svr in your focus ahead!
Dyce
Dyce
God bless you, and keep you healthy, our brother in arms....you do so much for so many, may it all come back to you...
Hey Jim, I've got a question for you..
I'm instructed to fill the syringe to .5 but theres always left over interferon (it's not the redipen, and my rn says to dilute with .7 of the dilution)...Do you know if it's better to do all of it? I feel like i'm throwing away part of something that I should be using to help me to svr. See. You just thought you were done....
I'm instructed to fill the syringe to .5 but theres always left over interferon (it's not the redipen, and my rn says to dilute with .7 of the dilution)...Do you know if it's better to do all of it? I feel like i'm throwing away part of something that I should be using to help me to svr. See. You just thought you were done....
A good decision. A well fought fight. But most of all, you should be proud of your contributions here and other places where you share the wisdom of your knowledge and experiences. Several weeks ago, when TN wisely decided to move on to the rest of his life, I know you admired his approach and view of the future. When the time comes, Jim, I know that you will exercise similar elegance. Until that time comes, I hope your recovery is quick and fruitful and not beset by second-guessing. You did well, oh true and valient servent.
WOOOHOOOO! I am doing the happy dance for you Jim. Most definitely keeping you in my prayers for SVR. Can't wait to hear your good news. Please stick around here, you are so supportive of everyone and are such a good resource. This really just brightened my day to know that another one has come through on the other side, with a VERY good chance of SVR!!!! Keep us posted please. Any decisions about when to get the PCR test? :)
I know it was agonizing decision for you, but it's made and you can now rest easy.
Congratulations on finishing the race! As all of us here know how difficult it can be at times - You did it!!
Blessings, Valorie
Congratulations on finishing the race! As all of us here know how difficult it can be at times - You did it!!
Blessings, Valorie
Well you beat me by a couple days, you old dog you. But then, unfortunately for you, you had a huge head start. It's nice to be riding off into the Hep free sunset with you my friend. May it be a oneway ride.
Here's to regenerating liver cells.
Here's to regenerating liver cells.
You sound like you've stared the beast in the eye and made him blink. I'm proud for you and for what you have made it through Jim. Enjoy life! You'll be in my prayers. Don't leave us though your wisdom has been enormously helpful to we the confussed. Dale 1A, 54YO, mild fibrosis, VL 1.5m and on 2/14 at six weeks of treatment it was 827. At 17 or 48. Pluggin away! (well some days)
Congratulations. What a long, hard road it's been. I'll keep you in my prayers. At what week will you do your PCR?
Dana
Dana
Jim, so glad for you...congratulations! I really feel you made the right decision. YOU WILL BE SVR, i know it. thanks for everything, jim, for just being here when yoou were having such a tough time yourself. you have been a great inspiration.
goof, i am so happy that you are finished as well. i also KNOW you made the correct decision. you guys will be riding off into the SVR sunset, believe me. hope you stick around for comic relief. VERY, VERY Happy for you both. You are two great guys who deserve all the best!!!
Erin go bragh!!!!!!
goof, i am so happy that you are finished as well. i also KNOW you made the correct decision. you guys will be riding off into the SVR sunset, believe me. hope you stick around for comic relief. VERY, VERY Happy for you both. You are two great guys who deserve all the best!!!
Erin go bragh!!!!!!
Jim, I want to congratulate you on finishing up. My opinion is that you're going to be SVR based on the year post clearance. I think that if you are clear per Heptimax <5 IU/ML then your plasma is clean and the only place that virons could be is in the liver. One year undetectable is enough time for the infected liver cells to die and voila!!!!!! the HCV is gone. I sure hope that this is the case for you Jim. You've worked hard to endure the extended TX and you've educated yourself and shared that knowledge with all of us and that ought to count for something - it does with me. I wish you the best luck. Stay well. Mike
Thanks guys. It means a lot.
Regarding a few questions -- Amir, I'm a Pegasys guy so really can't help you with your Peg Intron dosing question. If someone here doesn't know the answer, maybe you can call the Peg Intron Nurse Hotline for advice.
Regarding when I'm going to take my first post-tx PCR, the short answer is I don't know.
If I was planning on re-treating right away in event of relapse, I suppose I'd do the PCR's weekly starting next week to cut down as much as possible the time between relapse and re-treatment.
And while I will discuss that matter with my doc next week, that's not the current plan. Current plan is a long rest before taking any more drugs, if needed.
All said, I do have the lab forms at home so one morning I'll probably just wake up and decide to do it. In any event, some needed follow-up cbc's and chemscreens will give me some clues, but for now just want to enjoy crossing the finish line.
-- Jim
Regarding a few questions -- Amir, I'm a Pegasys guy so really can't help you with your Peg Intron dosing question. If someone here doesn't know the answer, maybe you can call the Peg Intron Nurse Hotline for advice.
Regarding when I'm going to take my first post-tx PCR, the short answer is I don't know.
If I was planning on re-treating right away in event of relapse, I suppose I'd do the PCR's weekly starting next week to cut down as much as possible the time between relapse and re-treatment.
And while I will discuss that matter with my doc next week, that's not the current plan. Current plan is a long rest before taking any more drugs, if needed.
All said, I do have the lab forms at home so one morning I'll probably just wake up and decide to do it. In any event, some needed follow-up cbc's and chemscreens will give me some clues, but for now just want to enjoy crossing the finish line.
-- Jim
Congratulations!!!! I think you are going to get the SVR, and wish you the very best of luck!!!
Although I have encouraged you to go as long as possible in the past, it was mostly from a standpoint of 'overkill' is sometimes the best insurance. In light of your 6 week RVR, I truly believe that you have gone more than the 'extra mile' to beat this virus. I am convinced that final eradication, or SVR, is very much a function of time to initial clearance, and that with RVR's the amount of time needed to finish the job is proportionately less. If you look at the virus in terms of ongoing 'half life', as in radiation decline (Dr. Ben Cecil has used this theory), then you can work out a formula using your initial viral load, and time to first undetected, which will indicate how long one needs to treat to achieve 'complete, total eradication'. Obviously, with a very short time to initial clearance, the half life is much shorter, and the time to get down to one remaining virion, is significantly less.
In other words, I can't imagine how your 54 weeks of tx would not be enough to complete the job, and then some! I think we are all very optomistic that you are going to join the growing ranks of the sustained responders!!!!!
Keep us apprised of how you feel ,week to week, since finishing the medications. Usually those first two to four weeks are unbelievable, and you feel like you have been almost reborn, physically and mentally. I hope your recovery is smooth, and that you do not get any of the delayed post-tx side effects that some of us have encountered. DO NOT jump to the conclusion that you have relapsed if you feel any strange physical symptoms, or fatigue, joint pains, etc. This often happens after tx in many SVR's, and does NOT correlate to whether or not you have relapsed.
On a personal note, I am sort of pinpointing my own problems lately, and I believe that a general syndrome of 'tx-induced Lupus' is the crux of my problems. Going out into the sunlight and tanning for a half hour or so now triggers a lupus-like reaction, including red cheekbone patches, feverishness, spinal and hip pains, stomach distress, and general malaise. I just found an article on Lupus describing this 'sunlight reaction' syndrome to the letter. It detailed every symptom of my latest flareup last week, after sitting out in the sun during the warm front that we recently had. My body used to love the sun...now it puts me out of commission. AND, I seem to get an instant burn! So, in short, maybe all my physical and psychological issues after tx are related to developing a state of general 'autoimmunity' after all the tx time. ( I did a total of 33 months of inf./riba, with MOST of those months at very high doses! Maybe over time it will fade, but in the meantime, I am going to figure out how to not 'trigger' the syndrome. I guess beach vacations are now off the table!
Oh well, things could be worse.
Enjoy your recovery, and return to great health, and feeling fantastic. And watch out for the calories!!!! After tx, many of us have eaten ourselves into a state of ....'largesse'!
It is really easy to pack on the pounds and then some!!!! So be advised. Although it sure is fun doing it!!!!
DoubleDose
Although I have encouraged you to go as long as possible in the past, it was mostly from a standpoint of 'overkill' is sometimes the best insurance. In light of your 6 week RVR, I truly believe that you have gone more than the 'extra mile' to beat this virus. I am convinced that final eradication, or SVR, is very much a function of time to initial clearance, and that with RVR's the amount of time needed to finish the job is proportionately less. If you look at the virus in terms of ongoing 'half life', as in radiation decline (Dr. Ben Cecil has used this theory), then you can work out a formula using your initial viral load, and time to first undetected, which will indicate how long one needs to treat to achieve 'complete, total eradication'. Obviously, with a very short time to initial clearance, the half life is much shorter, and the time to get down to one remaining virion, is significantly less.
In other words, I can't imagine how your 54 weeks of tx would not be enough to complete the job, and then some! I think we are all very optomistic that you are going to join the growing ranks of the sustained responders!!!!!
Keep us apprised of how you feel ,week to week, since finishing the medications. Usually those first two to four weeks are unbelievable, and you feel like you have been almost reborn, physically and mentally. I hope your recovery is smooth, and that you do not get any of the delayed post-tx side effects that some of us have encountered. DO NOT jump to the conclusion that you have relapsed if you feel any strange physical symptoms, or fatigue, joint pains, etc. This often happens after tx in many SVR's, and does NOT correlate to whether or not you have relapsed.
On a personal note, I am sort of pinpointing my own problems lately, and I believe that a general syndrome of 'tx-induced Lupus' is the crux of my problems. Going out into the sunlight and tanning for a half hour or so now triggers a lupus-like reaction, including red cheekbone patches, feverishness, spinal and hip pains, stomach distress, and general malaise. I just found an article on Lupus describing this 'sunlight reaction' syndrome to the letter. It detailed every symptom of my latest flareup last week, after sitting out in the sun during the warm front that we recently had. My body used to love the sun...now it puts me out of commission. AND, I seem to get an instant burn! So, in short, maybe all my physical and psychological issues after tx are related to developing a state of general 'autoimmunity' after all the tx time. ( I did a total of 33 months of inf./riba, with MOST of those months at very high doses! Maybe over time it will fade, but in the meantime, I am going to figure out how to not 'trigger' the syndrome. I guess beach vacations are now off the table!
Oh well, things could be worse.
Enjoy your recovery, and return to great health, and feeling fantastic. And watch out for the calories!!!! After tx, many of us have eaten ourselves into a state of ....'largesse'!
It is really easy to pack on the pounds and then some!!!! So be advised. Although it sure is fun doing it!!!!
DoubleDose
Congratulations on finishing tx and I truly believe SVR will be yours. It's been a long haul but you were a warrior every inch of the way. Be well, be happy.
Mattie
Mattie
Congratulations Jim! You've done it, and more - enjoy life. From now on, every day, in every way, you'll grow better and better. Please keep writing to the forum - you contribute so much information and insight. Best of luck.
Bob
Bob
Hey o wise one! yu know,i know we All know you kicked 'the beast's butt!!!!! What a journey....expect we will hear about your running the Boston Marathon this summer-just more inspiration for us newbies,stumblin down the same path with just abit more info,Thanks!!!! to you...GOODLUCK & have fun,expect you'll be looking up pam anderson,is that why yu stopped?? had to beat me & dyce to her doorstep........
Not feeling well today but just wanted to jump in the thread and say congrats to both of you. I beleive everyone worded what I wish for you both just right, therefore I will make this short...........WOOHOO........FISH ON!
Thank you both for being here, and all the best in the world to both of you for finishing your journey.
20/48 - 1A
Fisheress :}
Thank you both for being here, and all the best in the world to both of you for finishing your journey.
20/48 - 1A
Fisheress :}
hey jimbo, that's fantastic news to hear. i WILL be praying for you, that this will be "the end" of hep c for you!!! i do pray you will be able to really enjoy this post tx recovery period... and that you will be completely rid of all tx sides...YOUR IN MY PRAYERS!!!
it will be so nice to not have to deal with this disease anymore... and jim, i also want to thank you for all your devotion and service to helping the folks on this forum...
GOD'S BLESSINGS TO YOU!!!
sandi
it will be so nice to not have to deal with this disease anymore... and jim, i also want to thank you for all your devotion and service to helping the folks on this forum...
GOD'S BLESSINGS TO YOU!!!
sandi
Congratulations !!!!!!!!!!!
You are in my prayer for SVR and I believe that pain in the bones will be gone in about 6 weeks after the procrit is stopped.
Today being St. Patty's Day, may the luck of the Irish be with you as you start the first day of the rest of your life.
Peace my friend,
Bob
You are in my prayer for SVR and I believe that pain in the bones will be gone in about 6 weeks after the procrit is stopped.
Today being St. Patty's Day, may the luck of the Irish be with you as you start the first day of the rest of your life.
Peace my friend,
Bob
you should see a big difference in how you feel pretty soon. A spring in your step and a broader smile will soon become your trademark, especially after that first negative PCR coming up soon to a forum near you. Congratulations!
It must be wonderful to be finished - I can only imagine. Best of luck, congratulations! Keep writing the forum with your words of wisdom and experience. Enjoy life!
Bob
Bob
There's no doubt in my mind that you've prevailed, conquered, vanquished and otherwise made total mincemeat out of those miscreant virions. Congratulations on finishing this brutal marathon in such good form, and may you enjoy nothing but the best of health and peace of mind from here on.
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