Medical Forum / Diseases and Disorders / Hepatitis / August 2008
biopsy results in
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Kyle J. - 08 Aug 2008 13:51 GMT Hey all, Just got the results back from by biopsy. Doc says I'm barely showing stage one. This is very cool. Now she's recommending that I hold off for a few years untill new medication becomes available. She seems to believe that there WILL be better meds in a couple of years. I've mixed feelings about it. Yeah I'm stoked that my liver is in good shape but I'm kind of in a good position to deal with treatment right now if there is such a thing and have no idea what things will be like in a few years. Anyway, I've appreciated the input from you good folks. I might not be around for a while but will probably be back later :-)
Kyle J.
Cactus Jammies - 08 Aug 2008 15:13 GMT > Hey all, > Just got the results back from by biopsy. Doc says I'm barely showing [quoted text clipped - 8 lines] > > Kyle J. ///////////////
Hey Kyle, Your good news is our good news. Confidence about new meds.
best wishes
cactus jammies
greyhackles - 08 Aug 2008 17:16 GMT >Hey all, > Just got the results back from by biopsy. Doc says I'm barely showing [quoted text clipped - 8 lines] > >Kyle J. Tough call, lots of things to consider. Chronic HCV affects more than just the liver, and the longer one waits, the higher the odds of clinical manifestation. Generally, the earlier one attempts treatment, the more likely the success. Otoh, in a couple of years Telaprevir, perhaps followed by Boceprevir, will be available, bringing significant enhancement of the odds of success.
Then there's the aspect of "do-ability" that you mentioned. Younger folks generally tolerate the treatment better. Folks with good health insurance that fully covers treatment and side-effect management don't have that stress factor that those without have to endure. People with more flexible vocational situations will be better off than those who have more strict situations to deal with.
And on and on...You have to weigh all the factors and make the call.
I guess those of us who had significant liver damage and/or other manifestations had an easier time making the decision to treat ;-)
Cheers - and good luck whichever way you go...
/greyhackles
Russian - 09 Aug 2008 19:05 GMT I just want to back up greyhackles on this...
I decided to wait. Of course when I was first diagnosed, there was NO treatment. Then there was every-day interferon, then the 2-drug cocktail, then once-a-week peg with daily pills.
On my 3rd biopsy over about 10 years, I showed stage 3. I decided to go.
I got to 0 but it didn't sustain after treatment.
The question for you is how fast is it moving. If its stage one and going nowhere, waiting sounds good.
On the other other hand, it's easier to beat now than later. The virus is likely not embedded in scar tissue (much) at this point.
Also you are stronger than you will be if you wait until stage 3.
Like greyhackles says, it's a tough call.
I would suggest the swing factor is if this is a better time in your life to be down a year. It's never a good time, but if you have the money, a job you can hold even if you're down a bit, and supportive family and/or friends, you might want to go for it.
If only we could look into the future...
Also, for all you know, you might be one of the "Lighters" - people who get only light side-effects. Not rare at all. Heavy to light is a steady continuum and people's experiences are all over the map.
Good luck...
>> Hey all, >> Just got the results back from by biopsy. Doc says I'm barely showing [quoted text clipped - 31 lines] > > /greyhackles TX-012 - 08 Aug 2008 18:12 GMT > Hey all, > Just got the results back from by biopsy. Doc says I'm barely showing [quoted text clipped - 4 lines] > a good position to deal with treatment right now if there is such a thing > and have no idea what things will be like in a few years I think you just answered your own question...
Cody - 08 Aug 2008 18:17 GMT > Hey all, > Just got the results back from by biopsy. Doc says I'm barely showing [quoted text clipped - 8 lines] > > Kyle J. If you're genotype one, wait for sure. Why go through a treatment that will be really uncomfortable when odds are you won't clear anyway?
Cody
TX-012 - 08 Aug 2008 18:42 GMT > > Hey all, > > Just got the results back from by biopsy. Doc says I'm barely showing [quoted text clipped - 13 lines] > > Cody I'm curious to know what makes you assume the odds of an SVR are <50% for Kyle, even with standard combo treatment for 48 weeks (as I've noted, I'm doing 72, with fluvastatin, so you can tweak things for greater success). Odds of an SVR vary greatly depending on the demographic...obviously the fact that his liver is in good shape is great...Other factors which improve odds a great deal include race (definitely better to be white in this instance), not being overweight, being youngish, not drinking...
And so on...
dBo - 09 Aug 2008 01:35 GMT That IS great news, and we are all happy for you and always glad to hear {{good news}}
I agree with Grey, so many different factors to consider beside just how much liver damage so far....I'm sure you are greatly relieved by this news and feel the pressure to treat is off for now, and that's ok. I'm sure many docs would agree with yours as well.
My advice would be to also consider what your socio-economic situation is currently vs what it could be in the future, should you find yourself a couple of years down the road in more dire staits and feel more urgently that the time to treat has arrived. (My company, for example, is fond of reminding all 300 plus of us that anyone of us could get run down by that Big Yellow Bus on any given day with no warning... haha!)
I don't remember you mentioning factors like your age, but I'm guessing that you are somewhere in the general vicinity of 50-ish since I believe you mentioned before that you did A Bad Deeds back in the late eighties....even if you were only 15-ish then, a rough estimate tells me that this is 30 years later than the late eighties...
I was diagnosed in late 2005, age 52, and my best guess is that I contacted it in the 70's - it took that long for the damage to reach the point of giving "warning signs" that someone picked up, and that was only MILDLY elevated liver enzymes ...yet my liver was already at stage 3...
Did it cross my mind that if ONLY it had been discovered years ago, and treated, I might have ended up wiht way less liver damage and so on and so on....?? Absolutely! Yet I have to realize that if it HAD been diagnosed 20 years ago, I would not have had the "resources" to consider treating it anyway....I had no insurance, I was a single mom with sole financial, physical and emotional resonsibility for supporting all four of us.
I have had a great, stable job with the same company for 13 years, now with good benefits etc but even 10 years ago, I was still raising three teenaged boys and had no financial support from other sources...it would have been a really tough call for me to decide to go ahead with treatment even 10 years ago, had I been faced with that decision.
But by the time I WAS diagnosed, the kids were all out of high school and on their own, and I had not only the medical coverage, seniority and support of my employer, but I ALSO had a wonderful caring man in my life who was there and helped me thru the year of treatment without complaint. I was 1a and I cleared. Hooray. I think the stats are higher than 50 % these days but I could be wrong, wouldn't be the first time.
Be sure when you are making your decisions to treat now or not to treat now, that you consider what your situation is now and what your situation may be in the future. Not being negative, just realistic, thru my own experineces.
Whatever you DO decide all the best of health to you in the future going forward. May the Little Beasties not get you down if you choose not to treat for now. ~ Deb
Kyle J. - 09 Aug 2008 14:18 GMT Well, you all pretty much said the same things I'm thinking :-)
Yeah, I've apparently had the bug for the last 25 years. I'm fourty six this year and I've got an "understanding" job and Kaiser coverage. I don't know how they work but I got the definate impression from the doctor that based on the condition of my liver she thinks treatment now is just not practical and thinks I should wait. I don't know if that means Kaiser won't support going forward or not if I pushed it. I'm told that fifty percent clear rate is the best I can hope for - yes, type 1. The folks I've talked to in the medical industry definately seem to think that there WILL be better treatment in a couple of years. Probably better to wait. I've got a couple of teenagers but I'm married and don't expect that to change in this lifetime. I've actually been wanting to change jobs. I'm pretty tired of the way things are going at my job and I think the company is headed for a crash in the next couple of years. I was talking to sombody about another job just before I found out about the dragon and backed down. Now I'm thinking I'll go hunting again. In a couple of years I could be reestablished and secure - or not. Kind of a tough call there.
Kyle J.
> That IS great news, and we are all happy for you and always glad to > hear {{good news}} [quoted text clipped - 56 lines] > going forward. May the Little Beasties not get you down if you choose > not to treat for now. ~ Deb anonymousone - 09 Aug 2008 14:51 GMT > Well, you all pretty much said the same things I'm thinking :-) > [quoted text clipped - 77 lines] > > going forward. May the Little Beasties not get you down if you choose > > not to treat for now. ~ Deb I was treated by Kaiser. They will treat you if you choose to go forward.
TX-012 - 09 Aug 2008 19:46 GMT > Yeah, I've apparently had the bug for the last 25 years. I'm fourty six > this year and I've got an "understanding" job and Kaiser coverage. I don't > know how they work but I got the definate impression from the doctor that > based on the condition of my liver she thinks treatment now is just not > practical and thinks I should wait. I don't know if that means Kaiser won't > support going forward or not if I pushed it.<< They will, almost certainly.
>> I'm told that fifty percent > clear rate is the best I can hope for - yes, type 1.<< Yes, probably, with 48 weeks of treatment. But how you respond in the first 12 weeks is a great predictor of whether you will clear the virus or not. If, after 12 weeks hep c is undetectable in your blood, you have a much better than 50% chance of achieving an SVR, IIRC (google for exact statistics).
>>The folks I've talked
> to in the medical industry definately seem to think that there WILL be > better treatment in a couple of years. Probably better to wait. << There will be better drugs. Soon, though predicting FDA approval is a guessing game. You can perhaps even get into clinical teleprevir later this year. But this does not mean it is necessarily better to wait. The fact that you are healthy and stable, both jobwise and lifewise are HUGE PLUSES. You may need to actually be on treatment to completely appreciate how important this is. When the new protease inhibitors are approved, treatment will still suck---in fact it will suck even MORE---it will just suck for a shorter period of time for many people, with a better chance of success.
>> I've got a > couple of teenagers but I'm married and don't expect that to change in this [quoted text clipped - 4 lines] > thinking I'll go hunting again. In a couple of years I could be > reestablished and secure - or not. Kind of a tough call there.<< You can always start treatment, see how you respond, see how you feel, and decide whether or not you wish to continue. I had genotype 1 & started treatment 45 weeks ago, and my liver was probably no worse off than yours---though I was already subtly symptomatic---and I am younger than you (36) and have had the virus for fewer years than you (10-11)...and despite the fact that I didn't respond optimally at first (why I am doing 72 weeks) and have had absolutely awful side effects (pain, exhaustion, depression, etc.) I have never regretted or second guessed my decision to treat NOW rather than LATER. And I've always given myself the mental option of stopping if things got too dreadful...
Waterspider - 09 Aug 2008 20:37 GMT > <snip> The folks I've talked to in the medical industry definately seem to > think that there WILL be better treatment in a couple of years. Probably > better to wait. Kyle, do not consider this in your decision. People have died waiting for "better treatment in a couple of years." If your liver is not seriously damaged, you can wait. But don't kid yourself that you're waiting for a better treatment; you're waiting until your liver damages forces you to undertake whatever treatment is available. All the best, Waterspider
anonymousone - 10 Aug 2008 16:27 GMT > > <snip> The folks I've talked to in the medical industry definately seem to > > think that there WILL be better treatment in a couple of years. Probably [quoted text clipped - 6 lines] > undertake whatever treatment is available. All the best, > Waterspider Some pretty good advice on this thread I think. Maybe better than your Doctor's.
Kyle J. - 11 Aug 2008 13:56 GMT Thanks for the advice. I'll keep thinking about it for a while. I know from my doctor's point of view I would be waiting for a better treatment. This was made plain. Well nobody has been in all that big of a hurry since I found out I had this stuff. I suppose I'll be ok for a while longer. I DON'T plan on waiting untill my liver is a mess.
Thanks All! Kyle J.
>> <snip> The folks I've talked to in the medical industry definately seem >> to think that there WILL be better treatment in a couple of years. [quoted text clipped - 6 lines] > undertake whatever treatment is available. All the best, > Waterspider anonymousone - 12 Aug 2008 03:31 GMT > Thanks for the advice. I'll keep thinking about it for a while. I know > from my doctor's point of view I would be waiting for a better treatment. [quoted text clipped - 16 lines] > > undertake whatever treatment is available. All the best, > > Waterspider Its probably cheaper for Kaiser if you wait.
anonymousone - 09 Aug 2008 04:32 GMT > Hey all, > Just got the results back from by biopsy. Doc says I'm barely showing [quoted text clipped - 8 lines] > > Kyle J. "but I'm kind of in a good position to deal with treatment right now if there is such a thing and have no idea what things will be like in a few years"
Thats something to be considered. Also your age.
Another thing you may not realize is that some people have very few side effects from treatment. I was lucky enough to be one. During the course of treatment (48 weeks) my only symptom really was some tiredness due to anemia.
Your genotype would be very important also. If treatment is only 24 weeks thats something to consider also.
You might consider doing the first 12 weeks to see if you are a responder. 12 weeks is not hard to take and you will be in a better position to know then. If your not a responder there really is no decision to make.
Whatever way you go, all the best.
Cactus Jammies - 09 Aug 2008 19:52 GMT >> Hey all, >> Just got the results back from by biopsy. Doc says I'm barely [quoted text clipped - 32 lines] > > Whatever way you go, all the best.
>anonymous one ///////////////////////////////////// Well, I am not about to advocate against treating asap. Just to let you know that without a followup biopsy, I am still at the outward indications from ultrasound yesterday, successfully marking time until Telapravir or something like it comes out of Gate Number Three. (For rodeo fans) My position is that as a relapser with certain lasting effects and because of the insurance situation, I cannot re-treat. Not yet anyway. The technician that took my ultrasonic pictures yesterday sees many, many Hep C or Cirrhosis-blessed patients in a month. She made the remark after her and I had looked at and discussed those pictures that I should keep on doing what I am doing. I can live with that, literally. What am I doing? 4/day dosages of 1tsp Turmeric powder, 2 caps of Milk Thistle and 2 caps of Reishi mushroom extract. And the low glycemic index diet, and anything to keep me from making my liver involved in having to deal with excess adrenaline. Low stress everything. Nothing loud, no arguments, low expectations with a smile. And glimpses of medatitive peace. I was bx'd with mild steatosis and 3/3 condition five years ago.
cheers and good luck cactus jammies ===========
Paul - 16 Aug 2008 05:30 GMT On Fri, 8 Aug 2008 05:51:19 -0700, "Kyle J." <greyangelX1X@comcast.net>, in message ID <iKmdnYUBseza3AHVnZ2dnUVZ_sninZ2d@comcast.com>, in the newsgroup alt.support.hepatitis-c wrote:
>Hey all, > Just got the results back from by biopsy. Doc says I'm barely showing [quoted text clipped - 8 lines] > >Kyle J. I'm a bit late in on this thread as I've been away. Bear in mind hat some medical conditions (such as certain types of heart problem) can make treating more difficult. You may not have such problems now but you have no way of knowing what may happen later. If you wait to treat, you may have other issues later that prevent it. Having said that, as GreyH points out, there are many factors that can have an effect on your decision including age, where you are in your life, the risk of accidentally infecting others etc etc.
Waterspider - 16 Aug 2008 08:16 GMT > On Fri, 8 Aug 2008 05:51:19 -0700, "Kyle J." > <greyangelX1X@comcast.net>, in message ID [quoted text clipped - 24 lines] > effect on your decision including age, where you are in your life, the > risk of accidentally infecting others etc etc. "You may not have such problems now but you have no way of knowing what may happen later."
Of course age would be a huge factor here, but, good point.
Kyle J. - 16 Aug 2008 17:04 GMT >> I'm a bit late in on this thread as I've been away. Bear in mind hat >> some medical conditions (such as certain types of heart problem) can [quoted text clipped - 9 lines] > > Of course age would be a huge factor here, but, good point. Well it certain I'm not getting any younger but I tend to be pretty healthy and live pretty healthy and the biopsy supports that I seem to be doing the right things. I'm going to give it some time. I'm increasingly convinced that I need to get into a different job and this would give me some leeway to go looking.
Kyle J.
ekimnnud@gmail.com - 23 Aug 2008 15:17 GMT On Aug 15, 11:30 pm, Paul <dontspa...@westgreen.freeserve.co.uk> wrote:
> On Fri, 8 Aug 2008 05:51:19 -0700, "Kyle J." > <greyangel...@comcast.net>, in message ID [quoted text clipped - 22 lines] > effect on your decision including age, where you are in your life, the > risk of accidentally infecting others etc etc. Hi- I'm Mike D. Just Diagnosed w/ Hep C. Met w/ GI Specialist (a Dr. ROY, Excellent!!! ,at evanston Hosp. Evanston,IL Scheduled for liver biopsy,labs. Want aggressive Tx Plan. The news FREAKED ME OUT!! Don't fit the profiles, Wikipedia pie chart shows 10% "don't know". Friend in Austin, Tx says" Everyone" down there has it. ( i lived in Austin,TX 1978-1983) Am considering own theory, any and all info Appreciated!!! Let's beat this MFer!!! contact Mike D. email: ekimnnud@gmail.com, Tel. 847 657 7533 Thanks!
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