I am very confused and really need as much help as possible.
I was diagnosed with Hep C during insurance physical in 1994. I am 54 years old next month and am positive I was infected at the age of ONE with blood transfusion.
I have always had normal enzymes and was avoiding liver biopsy but finally took one last week and it came back as Grade 1 and a Stage 1.5. This is because at UCI they use a weird scoring system that converts to a 1.5 on the normal scales.
One expert at USC says that if I am 54 and am only a 1.5 I likely will not progress and I should wait for new anti virals that are "down the line" in 1-2 years that will come with higher chance of success and less side effects and shorter treatment period.
Another expert at UCI says I should treat now because if it doesnt work I can treat again later.
I have read the posts about all the side effects and they sound horrifying and I jog 4-5 miles a day, 6 days a week, and I am a busy trial attorney. My ALT and AST have always been normal.
I have read so many articles on line and since I am not overweight, dont have diabetis have normal ALT/AST, and have Grade 1, part of me says dont put myself through treatment when success rate with my genotype-1b, is at best case 35% success rate due to my age, sex, etc?
I am also freaked out about the one side effect I cannot live with, loss of vision. I know that is not high liklihood but I have read it does happen and it cant happen to me.
I would greatly appreciate feedback on my situation. It doesnt appear that is a "cut and dry decision". Thanks.
wow I am sorry to hear that. The Cancer is always something we should think of and put into our decision equation.
I know a 45 yo woman who is dying of liver cancer right now. Had HepC about as long as me but for some reason hers turned and mine did not. Reason to treat alone. Two beautiful daughters and loving husband she is leaving behind. Terminal. at 45.
What a shame - I can surely see why you decided to go for it.
Well I am getting glasses so hopefully my driving will get better and the folks down here in the South won't have to be near as cautious of me! So what's your excuse now on the roads up North? Keeping everyone "in-check" up your way? I am sure the snow does not make a difference...LOL
I want to thank everyone for their comments. I will read the articles mentioned and that can help me make a decision.
I will let you all know what my doctor at USC says about treatment options. It would be much easier if I knew another treatment was much closer.
I just got back my latest ViralLoad and it is at 86800 and I was blown away because in the past it has ranged from 760,000 to 12,900,000. I know it fluctuates but I wonder what it means that it is now so low. Does that mean more likely treatment would be successful?? Hoping for the best.
I don't think "trying" is without its own set of risks that have to be weighed and considered. In the two years that I've been here, there have been quite a few accounts posted of treatment attempts that have resulted in permanent, or long-term health problems.
There CAN be harm in trying. It may not happen often, but it does happen. And as Cuteus pointed out above, you never know which group you'll fall into.
I am not categorically against a strategy that involves treating and then bailing out depending on sx and response. In fact, some of the shorter-course strategies could legitimately be used this way in selective individuals with week 4 as a bail-out point to cut down tx exposure.
My only point is that such a strategy still carries risks which unfortunately haven't been thoroughly documented for reasons speculated in my last post.
Jim say you use the 4 week pcr as you stated, shows your not clear. The sides are bad and you just say the heck with it. Since your not clear by a pcr and quit then wouldn't you be considerd a non-responder. Im really curious about that. You would have to be labeled something, Right?
The definition of "non-responder" seems to morph and expand all the time, but certainly someone who is not viral negative at week 4 wouldn't fit into any of the definitions I'v seen. As I see it, they just didn't have a rapid viral response (RVR) if we're defining RVR as viral negative by week 4.
BTW I'm not recommending anyone stop tx at week 4, regardless of response, just using it as an example/option for discussional purposes.
Kalio1, sure didn't mean that you take this tx. lightly, i've read to many of your post and you sure don't come across that way. And you have never come across to me as being very pro or very watch and wait. you've always come across as being right down the middle. Unless somebody is a stage 3 or 4 and i think we all agree on treatment then. Your almost done Right? You lucky gal. Good luck to you.
No, nothing's a "given" and words must be chosen carefully. To say that there's "no harm in trying" and then say "every decision carries a risk" is contradictory and potentially confusing to someone is new to this arena.
I'M A 58 YEAR OLD MALE,GENO 2B, VL 318,000 AND DECIDED TO TREAT. BEING A 50 SOMETHING AND WAITING TILL A NEW DRUG COMES, WHICH MAY BE ANY WHERE FROM 2 TO 7 YEARS. I FELT I WOULD RATHER TRY NOW THEN WAIT TILL MY 60'S AND POSSIBLY HAVE OTHER HEALTH PROBLEMS THAT COULD PREVENT ME FROM TREATING.
AS EVERY ONE HAD STATED, IT'S A PERSONAL DECISION THAT NEEDS TO BE MADE BY YOU. I KNOW IT'S NOT AN EASY ONE, BUT WEIGH THE PROS AND CONS.
The decison to treat or not to treat should be made by you, your doctor, and spouse?. After having this for that many years and having very little damage you should take your time and research. being a geno 1 is the hardest to cure. Better meds hopefully will be out soon. My quess is 3 to 5 years. Closer to 3 years if all keeps going well.
Your reasons to tx. is also the same reasons not to treat. Age, geno1, little damage, overall good health.
These current meds are not something to take lightly. If it was me i would have a hard time going the tx. route. But that not saying you shouldn't treat. Keep researching, check in here often as you'll fine alot of people with different ideals on what you should do. But in the end its you that has to live with your decison. Best of luck to you.
You might want to check out the following two articles in Medscape as part of "Controversies In Hepatitis C Therapy".
Free Medscape registration may be required to access.
In article 2, Douglas R. LaBrecque, MD makes the case that (virtually) all patients should be treated. In article 3, Robert G. Gish, MD, makes the case for selective treatment.
Keep in mind that the articles are a little over 2 years old, prior to newer developments with protease inhibitors like Vertex 950. I would think this would add some more weight to Gish's selective treatment argument.
As Can-Do points out, age, geno, little damage and overall good health are good arguments both for and against treatment. Like Can-Do, based on my experience treating, I'd probably wait and see how some of the newer drugs pan out.
I'm also a geno 1B, 59 years old, also in good health prior to tx. The difference is I'm a stage 3 so decided to treat. Currently week 51 of 58-60 weeks.
There is no "right" answer to your decision, only what is right for you. Take your time, do some research, visit some of the other discussion groups like Janis.
My situation was similar to yours and I started treatment 8 weeks ago. I'm a university professor and department chair and (was) a daily swimmer and I have two kids.
Everyone is different in terms of side effects but there's no way I could maintain my normal pace and take these drugs (and your job is more intense than mine).
I set my life up for major slowdown during treatment--working mostly by email, no teaching, food delivery, etc. About half the time I can exercise--but at about 1/2 of my usual level.
I argued with myself about whether to treat or not for 10 years. I'm stil not 100% certain if it's the right thing to do when you are really healthy and have little liver damage. But I can also tell you that when I heard my virus was undectable at 4 weeks, I realized what an incredible relief it would be to be able to put this virus behind me.
By the way, I got lots of medical opinions--from friends who are docs as well as lots of consultations. In the end, the "get rid of the virus" crowd was bigger.
Welcome to the forum. Sorry you have to be here. Should I treat is a loaded question. If you will scroll down to the thread dated 2/13/06 you will find posts by cbueno who is also looking at treatment options, has a similar biopsy, same age, but is 1a, not 1b.
I think the references Jim gave are very good and you should read them. Also I believe the best starting point for research is the Janis7 website. I have found that all through my diagnosis and stages of my treatment that it has information to offer.
We have had one attorney clear - his screenname is rifleman and perhaps he will see this and respond. He was a geno 2 and did the short treatment (only 12 weeks). He could tell you more the impact upon his profession. I am a professional too - a CPA, a partner in a small tax practice. I am 58, geno 1a, biopsy grade 1, stage 1, and have known I had Hep C since 1993, and probably had it for 35 years. I am on week 31 of 48 and have been clear since at least week 20. Currently I am working 6 days a week and it is very stressful and I cannot tell you I am working at 100%. Still, I am doing it, and very very few people know-- at my office, only my partner. We did not want clients to know.
As Can do said, this is a very personal decision. I was most worried about the "brain fog" and the worry was worse than the reality. I think your worries about the eyes may be the same, but would bear more research. Good luck on your decision, and ask lots of question.
I have to reiterate what Friole said - I am working full time at my job still and it is TREMENDOUSLY difficult for me. I forget to do things and make mistakes now and my boss thinks I am a MORON (and he DOES know I am treating). If you have a VERY demanding job you should think about perhaps listening to your doctor (since your liver is in relatively good shape for those of us with HepC).
The sides are a real pain in the neck...but mostly it's physically possible to come to work. It's just the QUALITY of work that seems to suffer to me.
As everyone above said it's a VERY personal decision and things such as that must be factored in.
However ... you might WANT to treat now while you have insurance to cover it all and not wait until you are worse (although it certainly SEEMS like you have time nobody can ever be 100% guaranteed not to get liver cancer right?)
I am a Geno1A and 1B and have Grade Stage 2/2-3 and decided to treat figuring if it didn't work perhaps it would buy my liver time while they develop the new drugs (because there is NO GUARANTEE that these new ones in development will actually pan out you know?)
Welcome to the forum. As you can see, no one here can tell you to treat or not to treat, it is a personal decision although there is some good advice here. My decesion to treat came when my boyfriends friend he plays tennis in Florida with had been living w/Hep C for many years, now in his 70's and cannot treat because of cancer now. That made my BF very sad therefore I decided to go ahead and treat and not wait. I am a 46 Year old female, 1A, stage 1 and on shot #23/48. Undecteable since week 12. Side's come and go, some doable some render me to the bed for the day. Concentration at work has suffered somewhat with mistakes on documents that cannot be made! I am a yacht broker and the closing on the boats can be every bit as brutal as a house closing.
As far as you worrying about your vision, I too have been worried here lately too. Everything a blur at night, can't drive. Have been wearing readers for about 2 years now. Went to the eye doc on Monday and was told I have "dry eyes"!! Imagine that! Now I would think I could at the least figured that one out! But no, Doc said the watering that I am having in my eyes are like tears, no moisturizing therefore leaving me w/dry eyes. Special lubricating drops to help that. Although I did have a pre tx eye test done, she said they either missed it or it happened in the last 6 months. I have a stigmatism in my left eye so now I have to get glasses for driving and go ahead and have the bifocal part built in too. She did not think it was from the meds. If thats the worst of it on this tx, oh well! I can live w/glasses. Just glad there was nothing wrong that would have stopped my tx because I am 1/2 way there and coming up for 24 week PCR soon.
Good luck to you in your decision to treat or not to treat. I am sure we all will be looking forward to your post and if you have any questions, someone is always here to help if not to just listen or care. Glad you found this site.
What a relief that your liver is still in good shape!
Since you have had the time to research this disease a bit, you know that the progression is slow in most folks, but that some do suffer a faster than normal progression, and we never know who exactly will be the unlucky one. Just last yr someone posted the story of a FLA cop, who advanced to ESLD in a very short time, and succumbed to it. It is not common, but the possibility exists. It is very possible that you will have to modify your work and exercise schedule a bit, should you decide to treat.
ALl we can do here, is share the reasons we chose to treat or not to treat, and you can see if you have considered every aspect.
For me, age (the older you get the lower the chances of SVR), also the higher the chances for other complications due to hep c, Insurance could not be better in my case, and my job was not extremely demanding. All the pluses for deciding to treat. I did not want to live with this virus the rest of my life, and the new meds are still about 5 yrs off (per my hepatologist), and you don't know if in fact they will be better and with less side effects. If, at 50, the tx did not work, I would be significantly older by the next time I chose to treat. I needed to know if this tx would work for me, while I was still relatively young. To me, treating at 51 was the right decission, and it was effective. My chances were over 50%, the 35% you mentioned is with the older meds.
You can play with this predictor, and see how your chances rank
Going into something this serious with the ideal if i don't like it "I can just quit" could come back to bite you hard.
You'll be considered a "non-responder". Since insurance companies don't like paying the price of this tx. You just might have a huge battle on your hands if or when you decide to try again. Your no longer considered tx. naive which could exclude you from many trials in the future.
carrying the title of non-responder of hcv can have many drawbacks that i wouldn't want to carry just because i went into tx. thinking "oh well" i can just quit.
This disease is serious and weather you decide to tx. or not should also be taken serious. Good luck to you
Im just going by what my doctor told me, seems i've read that from a people on here also. But i really believe that weather a person decides to treat or not should be not be taken lightly. These meds and this disease is serious and should be treated that way. Just my thoughts. How a person wants to look at hcv and treating is their business. I try very hard not to sound to pro or con with this. I wouldn't want to think someone decided to treat or not to treat by what i say. And had serious problems with their health, job, marriage or whatever. I don't know about others but i wouldn't want that on my mind.
I should add that if your concern is future treatments, my understanding is that if you respond to one drug the first time, you should have a similar response to the same drug the second time In the case of relapses who are EOT negative, they are sometimes advised to tx longer. In the scenario you present -- pos at week 4 -- I'd say conventional length tx would be one option down the road, given the week 4 response was somewhat adequate.
I also haven't seen much evidence that the virus is somehow more difficult to treat the second time around. In fact, I believe Goof argued the opposite at one point based on a short-course study for geno 2's and 3's.
Given the situation described by wklaw, I personally would be hard pressed to jump into tx. My strategy would include pursuing Fibroscan/Fibrosure tests to coorborate (toss in some lawyerly talk) the biopsy. Since fibrosis progression is believed to accelerate over time, and since even a biopsy isn't terribly reliable, I wouldn't go too long without another bx. Of course I have a wait and watch bias, not widely shared here.
Jim: In the geno 2/3 Italian study, 10 of the 11 relapsing patients retreated. 9 of the 10 achieved SVR - which is better than SVR rates seen in the overall geno 2/3 population. 10 pts does not a statistic make, but it does seem hard to argue that subsequent retreatments aren't successful.
Comparatively, I've never heard of successful retreatments for SVRs!
Again, tremendous information from all that have been kind enough to reply.
I just returned from USC and spent over one hour with one of the leading hepatologists at USC. Great guy.
He said that "if it was him" he would wait on treatment in my case. He said that while nothing is black and white in this decision he sides on waiting because he assumes I have had infection for 53 years and advance has only been to this level over that time, the fact that have had normal ALT/AST, no other signs, etc. He said that when you balance the side effects and risks that are both known and unknown with treatment against the % of chance that the treatment will cure me that he would wait.
He said that I should have another biopsy in 3 years and he would expect very little progression. If it does progress to a Stage 2 or beyond that by that time there may be better treatments, less side effects, higher success rate with 1b cases.
He also said I could begin treatment and in my case if side effects were bad, he would recommend I stop. He would feel differently and push for treatment to continue in patient with Stage 3. He also felt it very important that my Grade is a 1 as to inflammation.
Of course he left decision up to me. He knows about all of the new treatments but feels they just wont be "ready for prime time" for about 5 years. He is very confident they will make treatment for everyone with Hep C much better in terms of side effects and % of cure rate.
Hope this helps. I am going to support group tomorrow night and still am not decided as to which route to take.
Any comments would be greatly appreciated, you people are great.
Kalio says: I'd like to see the data on that showing people attempting, stopping and then having permanent negative results. There isn't much data on tx causing any permanent damage that I have seen.
If you turn your question around, you also won't find much data showing folks not having permanent negative results. Point being, the data just doesn't exist for a number of reasons including perhaps not much incentive for drug companies to run these kind of studies -- and keep in mind most studies are run by the drug companies.
The way I see it, either they're risks in treating or there aren't, and while stopping early may mitigate some risks, it doesn't eliminate them. If the permanent risks of treating were zero, I don't think you'd see that many doctors recommending a watch-a-wait approach, for example to geno 1's with little or no liver damage.
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