Thank you! I really appreciate the link. It was exactly what I needed to keep my hopes up! I am really starting to get nervous. I started tx at 2 million ; 4 wk - 297,000, 8wk - 11,0000, 12 wk 950. I go back Dec 19 and all I want for Christmas is UND!!!!!.
I am female, 50, 5'5", 135 lbs. , take 14th shot Sunday, tolerating tx well, still able to play competitive tennis 2-3 times a week. Just get really short of breath! My hemaglobin stays around 9.4 though. White count was hovering around 1.6 but now up to 3.4. I did have a rough spell wk 7 - wk 10. Muscle soreness, headache, fatigue etc. I think (hope) I have learned to pace my self. But I have to admit, I am on the look out for another bad spell like that again. I try to stretch my muscles now so they don't ball up like that again.
There's a few us in the 72 wk club. No big deal. Each week is one more behind you. It can be overwhelming to look at it as 72 wks total treatment duration. I don't think about in those terms anymore, just glad when I get through the next week. Treatment pitfalls pop up weekly, so those are they hurdles we have to concentrate on.
Good luck and if you clear the virus at 24 wks, you are considered an official slow responder and a good candidate for extention.
Playing tennis with an hgb of 9.4! You are one tough cookie!
Once you get UND as long as it is at least by week 24, you should pay attention to the relapse rates instead of the SVR rates. There is little risk of breakthrough once you get UND, so the risk really is relapse after treatment is stopped.
Just wanted to add that since you are taking your 14th shot this Sunday, perhaps your doctor would be willing to do PCR testing every week to two so that you know exactly when you become UND. I did not have any additional PCR testing after 12 wks, so when I discussed extending treatment with new hep doctor that will handling my treatment extention I was told that he recommends a minimum of 36 wks addtional treatment after UND. Some doctors add the the weeks it took to reach UND to the 48 wks. Example, if you clear at 14 wks, your treatment duration would be a total of 62 wks. Had we known exactly what week I went UND it could have shortened my treatment course. I think I probably cleared somewhere around wk 15 but since I only have the 24 week PCR to base my UND status on, I will have to go the full 72 wks. Treatment protocols vary from doctor to doctor. I would rather err on the side of caution in my case since I don't know the week I obtained UND.
You may want to talk to your doctor about starting you on epogen (Procrit) for the anemia. I certainly will make you feel better.
I don't agree with Trinity here. I think as a slow responder you should do the full 72, and not try to find some treatment extension plan which is not backed up by studies.
I became UND myself somewhere between week 13 and week 15, and sure enough, it was tempting to do 52, 56, or maybe 60 weeks. This was also suggested to me by one of my doctors. But in the end, I decided to do the full 72, just to be sure I had done everything I could to win the battle against HCV. I am SVR now, and it certainly was worth those 72 weeks on tx.
It is interesting however which week you become UND, as the odds of getting SVR are greater the sooner you become UND.
Although this tx is no picnic, if my blood work stays stable, I am more willing to go 72 weeks in hopes of NOT RELAPSING than to cut it short and start all over again and never know "what if?" My doctor wants to test every 4 weeks. Hopefully my body will hold out and that will be close enough. I let them know at my 12 wk check, I am interested in going 48 wks past UND. He suggested at the time before we knew I still was detectable that we might go just a full year but said since we were not on a study, we have option of going 72. . (Hope my insurance feels the same!) I am being seen at a Liver/Kidney Transplant Center and they tell me the marjority of their patients are HCV+.
Although I felt really bad wk 7 - 10, for some reason, I feel great now even though hgb is low. I pray every day, my that my body is strong enough. I can tell my strength is not what it was before treatment.
Have you taken the Procrit? Does it help with shortness of breath? Sometimes when first beginnning an activity, my heart feels like it is going to burst and I can't breathe, but once I get warmed up, it gets better unless I run alot. I played a very competitive match for 3 hours a couple of weeks ago and the last 30 minutes, I could tell I wouldn't be able to go very much longer no matter how hard I pushed myself. I was wondering how much it would help and how many shots before most people see a difference?
Procrit helps with the shortness of breath, to a degree. You may not see your hgb go back to where it was, but Procrit can raise it enough to let you tolerate treatment and you will adjust somewhat to the lower hgb levels. It took about 4 weeks before I felt improvement, but as long as I took it I was able to maintain hgb of 10.1. Without it I needed transfusions. Best of luck to you. I hope you go UND soon.
Thanks, I am keeping the faith that I will be UND soon. If not, I will continue the battle! For some reason, I have alot of energy now, but good to know a helpful drug is there should I need it. It is comforting just knowing.
Yes, I am SVR and so are my two "companions in crime" who treated at the same time as I, Wyntre and Proactive. There is hope for us 72-weekers! But not to forget that not everybody gets SVR after extended tx. Nelson is a recent example of a relapser after 72 weeks.
The only way to find out if extended tx will give You an SVR is to try it. Roughly speaking, extension cuts the relapse rate in half, and that is good news for us slow responders.
Congratulations! I am so happy for all of you! I knew if I was not UND by 12 weeks, my chances of SVR were greatly reduced. I just am still just not sure exactly how much. I have heard any where from 6% to 40% chance of still clearing. Even if it is just 1% chance, I am willing to try 72 weeks if my body holds out. After reading Marcia's posts, I started taking Riba with teaspoon of organic coconut oil to help with the uptake and found other digestive benefits. When I asked my doctor how much fat I should eat with it, he said it didn't matter because 1000 mg was plenty for me. But now I wonder if I should have been eating more fat. Now from this forum, I am wondering if I have eaten too much sugar because I ate Halloween candy & ice cream with toppings. My weight is fine but am I insulin resistant?? My doctor never mentioned it. I need to stop obsessing!
On my first treatment, I didn’t achieve a 2 log drop at the 12 week juncture; at that point, I substantially increased ribavirin and extended treatment to 56 weeks. I eventually became RNA negative to <50 IU/mL in week 20 of Tx; however I relapsed shortly after completion of treatment. I have since re-treated, and am awaiting the 6 month post results.
And I didn't respond until after week 16 on a 24 week TX - and maintained UND to now for SVR status......
So as far as the world goes - I've been told I'm unique and extremely lucky.
But --- If it can happen to me --- that means it can happen to others.
I'm not advocating changes to the SOC - but I do believe that if we were permitted to get cheaper tests --- People who finally go UND or responders at later points would be able to monitor WEEKLY their stats.
I think that if we could get cheaper tests and monitor weekly - we would be able to determine that folks do not have to stay on TX as long as others.
But that's just my opinion on it --- I say DO NOT GIVE UP HOPE.
If you haven't responded - follow your doctor's orders --- if you have a slow response - follow the SOC --- and HOPE!!!
Because soon there WILL be better medicines --- and there will be faster cure rates.
Would of - should of - could of. You're right, need to stop obsessing. I eat sugar all the time, not insulin resistant and currently UND. As long as you are eating and taking riba with food, you'll be fine. I'm quite sure the food nazis would argue that point but I haven't heard any testimony directly relating UND to food (as of yet) but quite sure one will surface soon though.
Eat to live, that's the most important thing. If you think you are IR, get tested.
Bill1954 - Thanks for the thread. It gives me hope and reminds me I am not alone in this fight.
Meki- Thanks for the encouraging words. You are right! Anything is possible even if the odds are not in our favor. You are truly blessed. And if only the tests were improved and less costly. I was one of the unlucky few that had a painful biopsy with intense right shoulder pain for 5 days. And I am still battling the insurance company to pay for all my tests.
Trinity4 - Thanks, I will try to stop obsessing about the food. I have no reason to believe I am IR (except that I didn't RVR), just heard about it on this forum and it caused me to wonder. I am physically fit and my bx according to my doctor, was stage 1 Fibrosis. Since I am pretty sure I have had this since the 70's and moderately drank off and on for about the last 10 years, I am not sure I believe the bx is correct. Or maybe Hep C became active after I started drinking more?? Because I rarely drank alcohol when raising the kids but after they grew up it became a habit to have a few beers after work many days of the week. OH NO! I just realized I am doing it again! Obsessing! I am stoppng now. Thanks for listening to me rant! It is just that I have been holding it all in for so long! I am quitting now! :)
You're fortunate to have such little liver damage. I figure I've had hepc for 38 years and biopsy showed stage 3 last October. Never had any symptoms of hepc and yes I drank socially for years and became a weekend warrior for a year after a divorce 10 years ago so I'm quite sure that contributed to the progression of my liver damage even though I haven't consumed alcohol in over 3 years. Hindsight right?
Rant all you want - we sure do. Don't hold it in, that's more unhealthy for you than sugar!! Somethings we can change, other things we can't. During tx it's so hard to maintain good nutrition with the nausea, fatigue, aches etc. If a particular food makes you feel better, eat it. Of course, too much of anything is bad but I'd rather deal with an elevated cholesterol level after completing tx. To date, my cholesterol is normal but until tx, I was very active and that certainly helped with my cardiovascular and blood levels. Since you are still so physically active, that is helping to maintain a healthy heart and good cholesterol level too. It don't eat an abundance of sugar, but a I like my pastries and an occasional candy bar for energy.
Glad you found this forum and hoping you become UND soon. Please keep us posted of your progress. If 72 wks is the course of action, I'll ride the waves right along with you and I fully expect to wipe out a number of times before it's all over!!
Thanks for that link. If you're up on the lingo you learn around here, I think it's the best summary of current treatment of Hep C and whether to extend treatment.
I think testing VL once a month is adequate. If you have a doctor who will extend treatment to 72 weeks if you're a partial early viral responder (pEVR) then the big question is whether you become UND by 24 weeks. Current info says that if you're not UND by 24 then quit. If you do become UND by week 24 as a pEVR then 72 weeks is probably the best. Weekly testing might be important in a clinical study to find out the true cutoff for considering 72 weeks treatment, but it's just more blood draws and expense unless you believe in the theoretical 36 weeks beyond UND thing.
Same for EOT testing. It doesn't matter if you have an ultrasensitive test or not because the test is just to know that you didn't have a breakthrough at EOT which might be helpful to know if you have to re-treat. It doesn't help with clinical decision making at that point.
I have gotten tested periodically since becoming UND only to know if I had a breakthrough which would make it useless to continue treatment. Why put myself through more of this if I'm wasting my time?
I have 13 more days of treatment to finish 72 weeks then it's recover my health and get tested at 6 months. I could probably get tested at 3 months and know whether I'm SVR or not, but since 6 months is the gold standard for SVR and because I won't be considering re-treating anytime soon, I'll just enjoy life until then.
No studies, but "competitive tennis" -- depending on how competitive -- can potentially stress the immune system, and for someone like yourself that could in theory lower your chance of clearing the virus. Exercise on treatment is a plus but personally I'd lean more toward walks raising your heart rate nor more than 75% of max and never near the point of getting out of breath. We did have a member who ran two marathons during treatment. He ended up being a slow responder and eventually relapsed. Just something to think about.
I should probably mention the reasonable but often unpopular (and therefore not mentioned much here) alternative, assuming you have little or no liver damage. And that is to reassess the risk/reward equation of treating for at least 72 weeks versus stopping treatment and cutting your losses at 12 weeks to fight again with better drugs, better odds and hopefully no more than 24 weeks additional exposure to interferon as opposed to the 50 ahead of you. I get the feeling this alternative will not sync with your psyche but it really should be put out these days to slow responder treating with little or no liver damage treating with SOC.
Hmmm...you make good points. And my white count has doubled since the summer leagues and tournaments are over. Thanks..I did not put that together until just now! But it kinda makes me sad because playing is the one thing that keeps me going and I believe helps me function well even though my hgb is very low.
Oh! How I wish I knew it was safe to wait on the new drugs!!! If the new drugs were closer to being released, I would definitely wait but right now there are so many unknowns ( who knows what the future holds-economy, jobs, insurance, health) and the only chance of clearing right now is to take my chances with current SOC. My thought is that I will never be younger or stronger than I am right now. Or was 14 weeks ago :)
Yes, the bx result as read to me over the phone was : Stage 1 Fibrosis. I can't help but wonder if it is accurate. I drank moderately for the last 10 years and have most likely been infected for 30 years. I really wish I had the patience to wait but I guess I am one who needs to be proactive. If I wasn't treating, I would just be wondering "what if". I may be doing myself more harm than good but jmjm530 had me pegged when he said: " I get the feeling this alternative will not sync with your psyche but it really should be put out these days to slow responder treating with little or no liver damage treating with SOC."
I am so content with having treated 72 weeks in 2006-2008 rather than 24 weeks in 2011 or whenever. I have tx behind me, and that is where I want it to be. If I had stopped treating when I found out I was a slow responder, I know I would have been so anxiously and eagerly waiting for the new drugs it would have worn on me.
As I live in Sweden where HCV medication is totally free of cost, I am also a bit worried that when the new drugs are approved there will be a rush of HCV patients who want to treat. And being I had normal liver enzymes (no biopsy possible due to clotting issues) I have a feeling I would have had to stand among the last in line. There is only so much money they will use for tx each year.
I totally love the sensation of having virus-free blood in my body!
Does anybody know if whites tank because we overexert ourselves on tx? Sk indicated her whites doubled since stopping competive tennis. Let's say, someone who does not work or excercise daily would run less risk of low whites as opposed to those that do or is it just how interferon effects us individually? I know everyone experiences a drop but why do some of tank and others don't? Interesting, because I've always had a problem with low whites, even before tx. I worked out 3 x week prior to tx and swam the entire summer. Basically, haven't done squat since treating but work everyday and have a problem with the whites? Any ideas?
That is great you cleared. I'm just thinking of the damage that 72 weeks of these harsh drugs can due to someone. 48 weeks is tough enough but 72....wow! My utmost respect goes out to anyone that treats for that long or tx's serveral different times. God bless them. I guess jim and myself weigh the pros & cons of treating or waiting for the new drugs. If someone is stage 2 or less then I advise them to wait. stage 3 or more then tx now. Of course this is a very personal decision that someone has make for themselves. sometimes it helps to discuss with family, friends & doctors. I was in the watch and wait mode being a stage 1 on my biopsy report but changed me mind. I'm currently in a telaprevir study. The main reasons I elected to treat now as a stage 1 is because of the chance to treat only 24 weeks. Also the study I'm in everyone gets the real drug NO placebo. I felt this would give me the best chance to SVR.
Good point Za. I remember mremeet saying to run up and down the stairs before CBC to shake the neuts loose. (could of meant shake the nuts loose or there's a nut on the loose cause she's running up and down the stairs! LOL I'd love to to read a link too if there's anything available.
I've been reading this thread and see both sides. But in the end i think one must go with their own gut feelings, HCV seems to bring on alot of stress which is no good. So skersj i want to wish you the very best going forward with your tx. My magic 8 ball says SVR for you.
I also watch-and-waited from 1995 until 2006. The only reason I started tx in 2006 was because I had 2 chances out of 3 of only having to do 24 weeks although I am a geno 1, since I had a low baseline viral load. But once I started I could not make myself quit fighting the virus. I know myself well enough to understand that I would not have been content starting all over to wait once again. The only way I could find out if SOC would work for me was to complete the tx I had started.
I have no physical sx left at all after my 72 weeks. I do still have a tendency towards depression, which I account to both my life situation and perhaps tx hangover. It is getting better though.
Would I have been content with my 72 weeks if I had relapsed? Good question. Yes, I would have felt content with having fought the battle and learnt about my response to SOC and about my disease. I lived during those 72 weeks, they were not wasted.
Can't comment on why someone would suggest stair running before a Neut test (I would think it might raise hgb temporarily not neuts) but that aside, there is evidence that strenuous exercise depresses the immune function.
"HR" talked about it several times, both during and even right after treatment when he hypothesized (I don't particularly agree btw) a "hand-off" period where the interferon-driven immune system hands off to the unassisted immune system. This is part of the reason he suggests tapering, but I digress.
His point germane to this discussion is that strenuous exercise can depress the immune system and should be avoided both on and after treatment.
I repeat "strenuous" (not mild or moderate) which is open to interpretation, but certainly a marathon would qualify and a schedule of vigorous tennis matches on tx with low hgb probably would as well, especially if not enough recovery time inbetween.
If the logic doesn't sync (to me it just made sense we need to rest up on treatment) just google "immune system strenuous exercise" and there's lots of stuff including some studies suggesting runners experience more upper respiratory infections after a strenuous run -- something we have to be careful about as we tend to be prone to those type of infections anyway on treatment.
The advice to run up stairs to increase your white count is because exercise causes the white cells that are adherent to the blood vessel walls to release and enter the bloodstream. It's called "demargination."
what I want to know...is who's gonna help me climb those stairs???
better have a gurney at the top.
I guess jmjm makes an important point...
as I was reading the latest 1b study where a 9 superlateresponders SVR'd with extended tx I had to also look back over the last 56 weeks.
I cried when the end of this week came, because another month that felt like a year had come and gone.
I will be treating out to 72 wks and perhaps beyond that, to give my stage 4 liver the best and probably only chance it will get to SVR.
but if I was in early stage, knowing what I know now, it would be well worth weighing the wait for the PI's and such, as right now 24 wks sounds like heaven.
someone also posted yesterday a new vaccine from sweden that works on infected people....one shot vs. all this ????? One has to wonder if a wait might not pay for itself.
Even though I'm glad I'm treating, the whole year has been stolen.....I've zero stamina and am barely myself somedays I don't even recognize the person I've become...and though I know it's the meds, it no fun having all the joy sucked out of you by these nasty and unforgiving poisons.
I yearn for the day when medicines will hone in on only the cells or virons that need killing...but until then, this is literally waking up sick to poison myself more, each and every morning.
Most of the time I'm very pro-treatment, no matter what, but then I think of Foreseegood, and Scratchyhead and others who are waiting...and I think thank God they haven't had to go through this. And maybe they'll have to anyway, but manybe they won't. One thing for certain, I would not wish this treatment on anyone, not even my worst enemy.
(although I do confess to wishing hubby could just have a week of it so he would not be so puzzled by my condition).....but that's not really wishing it on him..if you follow.....only wishing there was understanding.
It's a personal decision, and hard to quit when you could still SVR given extended tx.
Especially if you don't know how long your job/insurance will be there....but if I was stage 1 or 2 it would be very tempting to wait for the better drugs. The toll extended tx takes afterwards and during tx can be enormous, plus, in most studies very few who tried for extended tx were able to make it. Most had to drop out early due to increasing sides....so even the choice to extend out can be taken away if the sides become too unbearable, or the doctor deems them dangerous.
had a similar sit with a match and you need to know when to quit. I was playing a neighbor and it started to go long, I pushed past the weak point and kept playing and by the time it was all over I had horrible muscle cramps for days. prob dehydration. I go out and serve and sometimes play against the ball machine but , for me, playing has become a thing of the past. I have 7 weeks to go and my birthday is in march. I cant wait to get back on the court and build myself back up. Push on soldier , but be careful.Light exercise is recommended
good luck , wish you und forever!!!!
Correction the guy I know how run marathon during tx he was on pegulated interferon and riba,geno 1 doing 48 w of treatment.
He did only run one half mara during tx 21km, but he runned 80km a week training.
The funny thing this guy was a skilled atlet in his young days handboll player then he developed severe alcoholism, even have had dilerium tremens three times.
The hospital phoned him once 12 years before he treated told him hes values had skyrocketed (alat) and they wanted him to treat asap, as he him self told me he was in a positiv period ( felt good about being drunk) although heavy consumtion, so he just continued heavy drinking for another 10 years.
This guy has been sober I think 4- 5 years now cleared the virus three years ago and is know top 10 in Sweden hes age categori running half marathons and also a 30km run every year ( the Lidingö run). ( he has to my knowledge never runned a full mara ).
Amazing story but back to my self, I must say I´m more of the kind that think you should listen to your body not exercise to much.
As you probably know it is not the virus in it self that damage the liver but the immun defense when defending the body against the virus.
I think I have a weak immun defense and also little damage although 3.8 milj baseline vl and being infected 35 years.
It can also be a genetic thing, some people just dont get their liver damaged as easy as others.
I'm a little late to the party but wanted to give you some encouragement.
I was at 411 at week 12. Way back when I was trying to figure out if it was worth doing the 72 it wasn't really very common so I went to Dr. Ira Jacobson, the doc who was the lead investigator of many of the studies we commonly use (Berg for example). He was the one who informed me (us here) of the Sanchez Tapias study as well. I asked him flat out what to do (my own GI wasn't sure at all). Dr. J said if I wanted to know at the end of the day I had done everything I could to improve my odds and get them to be the best that I could that he would advise the 72 weeks.
That was all I needed to hear. I've been SVR for over two years now.
Just put each week behind you and try not to focus on the number of weeks you are treating rather once you get to UND realize how great it is to count the weeks of how long you have been UND. Not saying that 72 isn't a long road but really - the time does go by quickly. It is a TEMPORARY thing that can give you permanent results.
Just wanted you to know, it can and does work.
As for exercising so much on treatment that your neuts would drop - no not me. I was a complete and total couch potato except for work. Just started exercising again this week as a matter of fact not that I couldn't but cause I didn't want to because I got used to being lazy. Best to keep at it if possible on some level during treatment because getting out of it.......wow boy oh boy do I feel sore today!
I do not want to sound negative about your treatment but, in your, case I think I might lean more towards Jim's suggestion to wait for the PIs to be available. From what I have read Telaprevir should be available by sometime in 2011. I believe it has been very well established that the efficacy of treatment with Telaprevir in the mix is much improved and the duration in some cases can be significantly reduced.
72 weeks is doable - I did 73 weeks myself so it can't be all that hard. But seriously it is a long and very hard road.
If you're someone who cannot bear to live knowing that an active virus is inside you then maybe embarking on a 72 week journey is worth it. If, however, you can deal with that and wait and monitor your labs and your liver then I think that might be a very reasonable approach. This all assumes that your liver is stage 1 or even stage 2.
I am not one who usually advises waiting and watching - ask Jim, he'll tell you - but in your case I believe a strong argument can be made. I would certainly give it serious consideration.
I wish you good luck regardless of which way you go.
Mike: I am not one who usually advises waiting and watching - ask Jim, he'll tell you - but in your case I believe a strong argument can be made.
Yes, that is correct :)
My guess -- and Mike will correct me if wrong -- is that Mike would have taken more of a neutral stance (compared to me) pre-treatment on "treat now versus wait" for a geno 1 with stage 1 or even stage 2 liver damage.
And again, not to put words in Mike's mouth, his logic here is probably that you did give it the try but results from the 12-week marker are telling you to pause a bit and reassess the situation because it's no longer the same decision you made before you started treatment. The duration will be longer, the odds will be less.
So, the reassessment process at week 12 for slow responders isn't just whether to extend or not, but whether to continue treatment or not. The latter gets left out of discussions here all too often and I'm happy Mike (a more neutral kind of guy :) ) agrees that in cases like yours and chimed in.
I don't think either of us are telling you to stop treatment, but just to take pause and reassess how you will proceed based on the new information.
Yes, you are correct Jim. Her viral decline slope make me pause - even though she did have a 2 log drop by week 12. A VL of 950 at week 12 with minimal liver damage and at a time when Telaprevir may actually be on the horizon compels a close analysis of the risk/reward ratio and a serious consideration of waiting and watching. If I was in her position I would probably lean towards waiting. Of course, I'm not in her position so I really don't know for sure what I'd do. I would think about it and discuss it with my physician - I do know that for sure.
I have been reading all of your comments trying to get some hopes in my own situation. Geno type 1a done treatment twice to no avail.. now just waiting for anything new. I have heard og the GI5005 & the vx950?? what phase are they in? anyone know? Thanks Taz
I think theres hope for us relapsers with the new drugs, not sure when they will be available though, lots of rumors and speculations going on about that.
I´ve learned not to put to much trust in rumors, especially when the stockmarket is involved.
I think even regulat tx is aproving a lot and to help your self you can keep your self updated with the newest strategies such as monitor the tx more individually.
If you IR ( insulin resitant) fix that before treating eventually add something out of the box such as pretreating with riba and or if you can take it double dose peg in the first weeks to get to RVR.
Alina sounds promising to add maybe boosting your immune system in the end and pre tx theres a lot of things to consider!!!
I think to maximize a positv outcome which is as we all know by now negativ, No virus detectable on a sustained base.
The more educated and prepared the more our odds will go up I`m sure.
I´m soon ending my second tx and i say this to my self as much as to you let us never give up hope wish you the very best next time.
Thank you all for the helpful suggestions. Believe me, I have considered each one and am very thankful. My husband and I had a long talk about it and this is what we decided would be good for us. It is sooo tempting just to stop and wait but I decided to go at least until week 24 for the following reasons:
1. I am tolerating the meds extremely well. The worst sx are SOB, fatigue & muscle spasms and then only during heavy activity.
2. I have no family hx of diabetes, RA or other auto immune diseases. I do have family history of high blood pressure & heart disease but I had a heart cath before treatment and my heart is in great shape. Family history isn't everything and no one knows what health issues could arise but I feel I have as good a chance as anyone to come out of this healthier than before.
3. I have already taken 14 shots - only 10 to go to see if I clear by 24 weeks.
4. I like being proactive. It would be hard to wait. If I get sick or sx get worse at least I know there is hope for the future. And if going 72 weeks keeps me from relapsing, I will be approx 6 months post treatment when the new meds are approved. If I fail to SVR and I am still healthy, I might be able to go right into the new drugs with a low VL. Does any one know if that would matter?
Everyone seems so confident in these new drugs and that they will be available by 2011. What do you guys know that I don't. I feel hopeful, just don't feel confident.
Ha!Ha! SX ARE a SOB!! But I meant shortness of breath! I also don't want to leave the impression that I don't have other sx. My hair is thinning, my whole body is as dry as a desert, my face has aged, etc. It is just that those kind of things are not really bothering me because they are not life threatening. And thanks to the people here, I have learned about virgin coconut oil for dryness, Biotene mouth products, etc.
I have followed Telaprevir for a number of years and on the basis of the drug trials' results I think sometime in 2011 is a reasonable estimate. Of course, no one knows for certain but that would be my best guess.
Have the trials studied SVR rate on relapsers or non responders and if so do you know what they are? Another reason I don't want to wait is that I also don't know for sure if I will tolerate the new drugs and I don't want to wait just to find out I am back at square 1.
Mike, sounds reasonable to me. Man we have been guessing on here for a long time now. I just saw this old post on here the other day.
, Nov 29, 2006 12:00AM
sorry for your dilema but am real encouraged by your dr's feel that vx950 will be available next year. i have been given similar time frames. i am also stage 3 ,just finished tx and waiting 6 mo results. the news is encouraging on vx.
Hope all is well with you mike.
skersj, both drugs just started recuriting a phase 3 trial for us relapsers and nonresponders. Both of the trials arms are for 48 weeks and should all be started shortly after the first of the year. Then there will be the 6 month follow up.
Unfortunately for you you are a lot like me. I just couldn't stand the thought of doing nothing and had decided to go for it even if I was stage nothing (unfortunately I was already a 3).
You do have time either way but one good feature of doing it now (not that I"m saying to - your decisioneither way) is with such minimal damage you just might be able to totally reverse it all the way down. It must be good just knowing you have a shot at it.
I wish I had found out years ago so I could have been in those shoes but unfortunately my lifestyle was just not ready for it anyway. It's a perfect combination of things that enable us to do treatment (well not perfect but tolerable I guess) good support group and family, insurance, job protection, etc. etc. and it sounds like you have them all in line.
Good for you. Either way stop watch and wait or go full guns blazing we are behind you 110%.
Thanks, my guns are a'blazing! Just popped my riba!
Will you be able to reverse damage? I have read some that have stage 3 have reversed.
I know what you mean about being ready and all things coming together at the right time to treat. I had a physical when we lived in New England in 2003 that showed elevated enzymes but I worked at a real "partying" company then and was drinking more than I should. Common practice there was meeting in the foyer many afternoons and having drinks while "meeting". I blew off the abnormal labs as being caused by drinking and did not retest. We moved and I forgot all about it until it showed up again. But one thing I know for sure is that I was alot more prepared to handle the situation now than I was 5 years ago (even 2 years ago would have been difficult). Everything in my life was more in line to handle the diagnosis and treat this time.
well you certainly will be able to say you decided with an educated and informed consent. After seeing the Vertex in 06 post it does give one pause.
On the one hand, I see jm and mikesimons point very well...on the other hand, if you are like me, or like NYgirl, you would really be causing crazy making....
something impeccably logical like waiting, or quitting, can make no sense on an emotional or spiritual level. It is after all, only our lives we are talking about.
(I was advised by doctor and some member's to quit in here) (my VL went up not down one month). I opted to believe this might be due to the ongoing infections and leaking gall bladder causing a immune system hail storm. Had the GB removed, stopped eating fiber with riba, eliminated all fat and lipids, and went UND soon after.
Of course the studies showing that late responder could still SVR were just coming out.
Still it was a hard decision given my doc only gave me a 3% chance even with ex. tx.
I took it...
and since then more studies have shown that late reponders have almost the same chance as early and super early responders, given extended tx.
Make the choice based on what you'll be able to most live with. You have to look at yourself in the mirror at days end, and be assured that your fight is worth it.
For me it was an easier choice since I was already experiencing stage 4 symptoms...
But even if you are not....there's something about knowing that little devils are chewing up your insides that just doen't sit well with most...
anyway, welcome to the 72 club (sounds like), and either way, we'll be here for ya.
Thank you for those encouraging words. Right now, I just hope I get UND so I can join the 72 club! I really can't focus on anything but my appt in 2 weeks so I can get tested again. I see their point too which makes this decision so hard! Every day since I posted my decision, I have questioned it. I am still in that fearful/hopeful stage of getting UND. Right now I just keep hoping that the next lab will show UND. If I don't by 16 weeks, it will be harder to live with that decision. At first, I ate fiber with my riba. My doctor had told me not worry about what I ate. It was summer then and I had high fiber cereal for breakfast. But I am curious about eliminating fat & lipids. I had increased mine - sometimes having eggs for breakfast and sometimes a teaspoon of organic virgin coconut oil when I just couldn't stand the egg, Also, I eat yogurt, should it be fat-free, low-fat or full fat. I eat reduced fat ice cream just because I like the Edy's slow churned vanilla. Any info would be helpful. I have so much to learn!
You won't get everyone in here to agree with my low lipid theory. In fact most may disagreed. Certainly you can't eliminate fat entirely, that would be dangerous,
also you need cholesterol, it is essential to health and if you go too low, your liver will just make it's own from other things like sugar...it's that essential. Ergo you will always have some fat in you, and not all fats a equally bad, some are good.
My connundrum arrived because of studying the writing of HR in here. (Hepatitis Researcher is a HCV research doctor, he advocates using the lipid PPC for fighting liver fibrosis, however he also points out that all the research points to the virons being impenetrable by the current drugs due to their hard, multilayered lipid shells.
Also recent studies suggests drugs in the statin drug class have resulted in greater rates of SVR. Ergo, while I don't advocate statin use for liver patients as it can be a dangerous drug for them (warnings galore) still, reducings ones overall lipid profile by diet alone may just do the same thing, and lowering your blood lipid levels may be the extra boost towards SVR that many need.
It helps if you start thinking of foods as part of your drug regime. All drugs and foods get reduced to little white powders so to speak. Proteins, needful but high levels tax the liver so limit them, sugars, natural fruits best, too much is turned into fat so limit them, fats and lipids, essential as well, but you read my logic so limit them.
If you get your lipids too low, you may become a candidate for serious depression and suicidal ideation, I know I did. This is because cholesterol protects the brain, and without enough one feels raw...like someone has taken a cheese grater to your mind and emotions.....my solution: modest doses of 2 liver friendly drugs, Ativan daytime and remeron at night, and if I still have the blues bad for more than a day...I'll now go hurl down a couple of eggs. This restores my level up to where I'm not crying whenever a tv show, or freaking commercial is over....which I was doing.
So balance, it's all a big balancing act and all of us are just figuring it out as we go.
Very Interesting! No chance of my lipids getting too low. Even when I used to run 25 - 30 miles week. My total cholesterol has never been below 234. I do have genetic high cholesterol. Is it the reason my virons are so persistant???? Although my LDL is high; my HDL is high also. My ratio is good as far as protection from heart disease but is it protecting my little nano size virons???? Maybe instead of eggs for breakfast, I will increase oatmeal intake. What's it gonna hurt?? I am getting kinda sick of eggs anyway. :) I only started eating them to get the fat for riba anyway.
Your liver and kidneys are both involved in your cholesterol levels, apart from genetics which also play a part. A lot of folks don't know the role kidneys function plays. Thyroid function also effects it. If you are even slightly hyper thyroid it can make you CH go too high, whereas hypo/slow thyroid patients tend to be low.
If you limit your protein serving to 3 oz at a time, and yes add oatmeal you should be able to improve that. I shaved 40 pts off mine with those 2 changes, mines down to 111 now, total. Of course I eliminated all hydrogenated and polysaturates 40 years ago.
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