Aa
Thinking about quitting treatment
I just really don't know what I'm going to do with treating any more, maintenance dosing, a trial, etc. Since the doctors seem to be telling me that I'm wasting my time treating, I lean towards weaning off and then, stopping. But, a part of me did want to know what that final viral load would be. I talked to the women at Shands today. I don't know if I'll be able to do that trial because I won't have had enough time for viral clearance. Also, this is not one of the Roche or Schering trials. It seems like a Shands type of trial. It was for a drug that was given to Aids/Hep C patients. Those patients were given this drug for Aids related diarrhea and while they were on it got a remission for HEP C. Now they're wanting to do a study in Sept. for non-responders. My problem is that I have a chronic issue that I've dealt with for years with serious constipation and I'm thinking that this drug could really aggravate that problem even worse if it was given to AIDS patients for diarrhea. I really just want to give up for a while and just see what happens in a year from now. I'll probably go ahead and send her my records and attach a note addressing my concerns.
Susan
Susan
just wanted to wish yu Best of Luck.....and Strength,tho does not seem lacking on your part..
were those real snortles ? actual snort and chortles ? wow...what talent! I'd like like to snortle some more more but got to go now - new casket catalog just arrived (very exciting, way bigger pillows, much more leg room). Please consider (yes, I'm a cautious cat too) that even if everything seems just fine extra CBCs, etc. are not a bad idea when snortling off where none have snortled before...
In the battle of the Dragon, you are the Ultimate Warrior. I wish the very best to you.
Dana
Dana
I've tried Milk Thistle on 2 different occasions and it aggravates my allergies and asthma, so I can't tolerate it either. It is a weed and I have a lot of weed, mold type of allergies.
I'm just going to quit, probably when I finish up the shots I already have sitting in my refrig. I don't see the point in wasting them.
Susan
I'm just going to quit, probably when I finish up the shots I already have sitting in my refrig. I don't see the point in wasting them.
Susan
Susan, in my eyes ,and many others no doubt, you are victorious many times over. My prayers are with you all the way regardless of the path to ultimate success. Frank
My first treatment was in 1997. I've been trying various treatments with periodic breaks off since then. Somewhere on here listed is all the various treatments that I've tried over the years. But, for the newbies who don't know: I've tried, Intron-A/Riba (1st treatment for 48 wks)
Infergen 9mcg 3 x a week (for 6 mon. 2nd treatment)
Maintenance dosing with regular Intron-A (3rd treatment)
Peg-Intron/Riba (48 wks) (4th treatment)
Pegasys (2 months and then switched back to Peg-Intron and Riba. Also, Zadaxin was used at the same time. (5th treatment)
Double dosing with Intron-A and Peg-Intron combined and Riba (6th treatment)
Infergen/Actimmune/Riba (for 8 mon.) (7th treatment)
And now, this treatment with Infergen and high dose Riba (8 pills a day). (8th treatment)
I've had 3 biopsies each one showing more damage.
I really think I should stay about from treatment and leave it up to God at this point. I may change my mind if they end up approving the Vertex drug. I really don't know what else to do.
Susan
Infergen 9mcg 3 x a week (for 6 mon. 2nd treatment)
Maintenance dosing with regular Intron-A (3rd treatment)
Peg-Intron/Riba (48 wks) (4th treatment)
Pegasys (2 months and then switched back to Peg-Intron and Riba. Also, Zadaxin was used at the same time. (5th treatment)
Double dosing with Intron-A and Peg-Intron combined and Riba (6th treatment)
Infergen/Actimmune/Riba (for 8 mon.) (7th treatment)
And now, this treatment with Infergen and high dose Riba (8 pills a day). (8th treatment)
I've had 3 biopsies each one showing more damage.
I really think I should stay about from treatment and leave it up to God at this point. I may change my mind if they end up approving the Vertex drug. I really don't know what else to do.
Susan
See the 'News Stories and Other Posts' from 6/1. There ws mention of a drug called 'Alinia' from Romark. Maybe there is some info there. I think Forseegood made reference to it.
Susan,,,,I honestly don't know how you have endured the tx as many times as you have already and keep going! And sane on top of it! I know if it was me,,,,one more viral count to reassure what it is and if still registering a count,,,,I would give it a break for awhile just to recoup your own health. You are such a determined,,,focused person though,,,,I know this will be a hard decision for you! You know,,,,we all will support any decision you make!
Susan I am so sorry and lost for words. Being a pro treatment kinda guy, in your case I would wait for better meds.
Know you are in my prayers, let us know what you decide.
Beagle
Know you are in my prayers, let us know what you decide.
Beagle
Susan-- I wish you the best of luck with your decision. I would definitely contact the study director and express my concerns regarding chronic constipation, and see what they say before dismissing the thought. FLguy mentioned a previous thread on this subject; I remember it also but can
Your attenmpts at treatment with the current drugs available have just not led to a successful outcome. I would certainly vote for your quitting and giving your body a well needed break for awhile. At this point, even if you do tolerate treatment, it just can't be doing your body well. As for this new experimental drug, I would research very thoroghly before I jumped in. I truly think you need a break. Surely you have helped your liver with all you have done.
My sincerest regards, Kathy
My sincerest regards, Kathy
one more PCR, but since you are not in shape to do a yr from a negative, maybe forgoing the test will be best. You did respond to this last tx, better than I have seen you post before, what a shame that this strain has mutated to such a resistant level!
keep in thouch mith Miles, since he and you seem to be head to head in number of tx tried. take care the best you can.
keep in thouch mith Miles, since he and you seem to be head to head in number of tx tried. take care the best you can.
I want to add my thoughts to the many here, all going towards you. It is hard for me to believe there isn't some company out there who would look at your story and think that there may be something to be learned about this dreadful virus. I mean, why, after all the tx you have been through are your bx's getting worse and why is the virus still living? What is missing in the big picture?
I pray someone somewhere will have an answer for your struggles. You are a hero in my book. Whatever you decide, we are all behind you. Best of thoughts going your way.
miss
I pray someone somewhere will have an answer for your struggles. You are a hero in my book. Whatever you decide, we are all behind you. Best of thoughts going your way.
miss
Some of the oldies may remember me. I finished up 48 of Peg/Intron in 9/03 and was blessed to beat the dragon the first go-round.
Susan, you have my utmost admiration for sheer determination and guts. I only had to go through this sh*t once for 48 weeks and cannot, without hesitation, advise anyone to try it without a good soul searching. Once was hard enough. I don't know that I could ever be as strong as you. You are in my prayers.
Susan, you have my utmost admiration for sheer determination and guts. I only had to go through this sh*t once for 48 weeks and cannot, without hesitation, advise anyone to try it without a good soul searching. Once was hard enough. I don't know that I could ever be as strong as you. You are in my prayers.
Susan,
You've fought long and brave, but if your doctors tell you that you're wasting your time, I'd either go with their analysis, or if still unsure, seek another opinion.
Also, if you've already decided, I see no reason to take whatever Peg is still in your refrigerator. Better to give yourself a few weeks of relief instead, and you can always donate the drugs back to your doctor or keep them in the fridge for possible future treatments.
Regarding the Alinia trials in the U.S. -- I'd make sure that they're not simply testing for viral eradication, as opposed to going for SVR. As I read it, in the Egyptian trial they just went for viral eradication and apparently stopped at the 24 week point with no SVR data being developed.
Quoting from a recent <a href="http://tinyurl.com/muc3b">press release</a> on Alinia
"An interim analysis of the first 20 patients enrolled in the study showed that 50% of patients receiving Alinia administered orally as one 500 mg tablet twice daily with food had undetectable HCV RNA in serum at the end of 24 weeks of treatment compared to none of the patients in the placebo group (P=0.03)..."
Unless I'm missing something, these figures are not very impressive compared to peg/riba combo and especially not compared to the early Vertex data.
As you may know, Vertex has already scheduled trials for prior non-responders, and this might be something you or your doctors might want to look into.
All the best whatever you decide.
-- Jim
You've fought long and brave, but if your doctors tell you that you're wasting your time, I'd either go with their analysis, or if still unsure, seek another opinion.
Also, if you've already decided, I see no reason to take whatever Peg is still in your refrigerator. Better to give yourself a few weeks of relief instead, and you can always donate the drugs back to your doctor or keep them in the fridge for possible future treatments.
Regarding the Alinia trials in the U.S. -- I'd make sure that they're not simply testing for viral eradication, as opposed to going for SVR. As I read it, in the Egyptian trial they just went for viral eradication and apparently stopped at the 24 week point with no SVR data being developed.
Quoting from a recent <a href="http://tinyurl.com/muc3b">press release</a> on Alinia
"An interim analysis of the first 20 patients enrolled in the study showed that 50% of patients receiving Alinia administered orally as one 500 mg tablet twice daily with food had undetectable HCV RNA in serum at the end of 24 weeks of treatment compared to none of the patients in the placebo group (P=0.03)..."
Unless I'm missing something, these figures are not very impressive compared to peg/riba combo and especially not compared to the early Vertex data.
As you may know, Vertex has already scheduled trials for prior non-responders, and this might be something you or your doctors might want to look into.
All the best whatever you decide.
-- Jim
To me, 'iterim analysis' suggests they are continuing therapy - this was just an early update. Although you would expect they would have issued a supplemental update by now.....so maybe not. Or suppressed bad news? Or as someone pointed out, perhaps there are back room negotiations underway? By now I realize this post is pointless. No stranger to me.....
I based my assumption they stopped at 24 weeks based on the fact that the Egyptian trial started "early 2005). So it seems extremely odd that if they continued past that point, no new data has been released, as that was 18 months ago! But like you say, who knows. If I were interested in the Alinia trial in the U.S., I'd call/email them and find out exactly what they did in Egypt.
-- Jim
-- Jim
In case I forgot, thank you for that little<href="http://www.medhelp.org/forums/Hepatitis/messages/41086.html">tutorial</a>tutorial yesterday in how to code in an html link.
-- Jim
-- Jim
I think one of the biggest problems for someone like you or I is admitting a tentative (and not permanent) defeat of ANY kind. You are so conditioned to fight fight fight right now that it must seem just impossible to stop = even for a while.
It's going to be a tough mental adjustment - one I can't imagine.
But you have tried all of the toughest things - did even the Infergen. I really hope that you think of the rest of your body now and rest.
It's GOT to have taken a huge toll on your OVERALL general health (not just the liver).
Wait, see what happens with the new drugs and then get in one of their trials.
Or wait and then think about a new way.
Right now you sound so tired = while it's not admitting defeat in ANY way you just have run out of viable options and the rest of your body needs PEACE.
I hope to GOD there was fibrosis reduction with the Infergen combo.
Why don't you just rest for a few days and then decide what to do. I know it sounds easy not to think of it = it's easy for me to say that huh?
You know I wish there were those magic words/answers and I just don't have them. It's driving me crazy I wish I did so much.
It's going to be a tough mental adjustment - one I can't imagine.
But you have tried all of the toughest things - did even the Infergen. I really hope that you think of the rest of your body now and rest.
It's GOT to have taken a huge toll on your OVERALL general health (not just the liver).
Wait, see what happens with the new drugs and then get in one of their trials.
Or wait and then think about a new way.
Right now you sound so tired = while it's not admitting defeat in ANY way you just have run out of viable options and the rest of your body needs PEACE.
I hope to GOD there was fibrosis reduction with the Infergen combo.
Why don't you just rest for a few days and then decide what to do. I know it sounds easy not to think of it = it's easy for me to say that huh?
You know I wish there were those magic words/answers and I just don't have them. It's driving me crazy I wish I did so much.
Hi Susan,
One thing for sure, never give up hope. I am a junior in this forum but can recommend you one thing which i am trying right now, Use sylmarine on daily basis. It does not eliminate virus but it will prevent further demage of liver. Have you ever used it? I am not havent even started my treatment yet but my doctor prescribed me sylmarine+zinc+selenium capsules and in first 10 days my SGPT droped from 277 to 85. I am expecting that it will be normal in a month. however in your case, your doctor can tell you about the dose of sylmarine, zinc and selenium. and also try a little amount of vitamin E only, which prevents further scarstissue building. Please make sure that you take vitamin E along with selenium since when used together, they are very useful for liver. Please remember one thing, treatment is necessary but preventing further damage is more necessary. Have your doctor given you sylmarine during treatment to prevent damage to liver as well along with tx and other stuff which only destroys virus and doesnt protect liver?
As you told me about further damage on every biopsy, please take precations to protect your liver, and dont only target virus.
As far as i can understand with your data, your target was virus not liver damage. (TX, interferon, pgy etc are not the only hope in this universe)
Best of luck,
Thanks,
Naeem
One thing for sure, never give up hope. I am a junior in this forum but can recommend you one thing which i am trying right now, Use sylmarine on daily basis. It does not eliminate virus but it will prevent further demage of liver. Have you ever used it? I am not havent even started my treatment yet but my doctor prescribed me sylmarine+zinc+selenium capsules and in first 10 days my SGPT droped from 277 to 85. I am expecting that it will be normal in a month. however in your case, your doctor can tell you about the dose of sylmarine, zinc and selenium. and also try a little amount of vitamin E only, which prevents further scarstissue building. Please make sure that you take vitamin E along with selenium since when used together, they are very useful for liver. Please remember one thing, treatment is necessary but preventing further damage is more necessary. Have your doctor given you sylmarine during treatment to prevent damage to liver as well along with tx and other stuff which only destroys virus and doesnt protect liver?
As you told me about further damage on every biopsy, please take precations to protect your liver, and dont only target virus.
As far as i can understand with your data, your target was virus not liver damage. (TX, interferon, pgy etc are not the only hope in this universe)
Best of luck,
Thanks,
Naeem
What's done in Egypt stays in Egypt. And as ugly as some of those camels are, that's probably a good thing.
Do I remember you had a highish ALT reading at some point after tx? Was it a blip, or had it remained high through tx?
Do I remember you had a highish ALT reading at some point after tx? Was it a blip, or had it remained high through tx?
Goof: Do I remember you had a highish ALT reading at some point after tx? Was it a blip, or had it remained high through tx?
It was "higher" not high. Around 32 if I remember and still well in normal range but up from around 22 earlier in tx. Now it's back in the low 20's again. My GGT which was also elevated is now also trickling back down. I guess tomorrow's the day they start poking around in our blood :)
My other point on Alinia that might have not been expressed clearly enough is that only 50% of the the Alinia trial were non-detectible at 24 weeks which isn't much to toot your horn about. Peg and riba do much better than that. Still, you gotta hope, especially when a drug comes out with so little side effects.
-- Jim
It was "higher" not high. Around 32 if I remember and still well in normal range but up from around 22 earlier in tx. Now it's back in the low 20's again. My GGT which was also elevated is now also trickling back down. I guess tomorrow's the day they start poking around in our blood :)
My other point on Alinia that might have not been expressed clearly enough is that only 50% of the the Alinia trial were non-detectible at 24 weeks which isn't much to toot your horn about. Peg and riba do much better than that. Still, you gotta hope, especially when a drug comes out with so little side effects.
-- Jim
Yes, I'm the one who mentioned the Alinia and I'm glad someone found the thread, cause I stink at finding things on this board, can't figure out the search engine here...
I mention it because I already have 4 friends on the stuff...one of them was able to get a six months supply from the pharma co itself because she filled out some hardship papers....it is expensive...one thing Susan, this drug is for a particular type of diahrrea(I never know how to spell that word!!!) and none of them, so far, have reported worse then normal constipation issues...if you were to try it (as everyone here knows, ad nauseum) I sure know a helluva lot of ways to keep your plumbing going smoothly...
In reading Jim's concerns (which seem, at this point, inconclusive) maybe this would be a good drug for maintenance? to keep the little suckers at bay at least? if nothing else...I believe Kalio brought up a good point in the thread that hep c duplicates(?) (busy right now and can't remember the word she used) mostly in the intestines? this would make sense if it were true...I agree with most here that it sounds like you should give your body a break to recoup and regroup...sometimes we have to measure the cost/benefit of going on with these drugs at some point...if you want updates on the women taking this drugs, two are on Janis, one named Boomer and the other Shiela....
Not to start a prairie fire here, but I do know a lot of people who were non-responders, relapsers, years ago now...and they are just going on with their lives and they are not *particularly* ill with this disease, not everyone graduates to pre-transplant status on some type of rapid timeline...
just spoke to one of my friends, he's a plumber and still works 4 days a week, tried the treatment 3 times, then the infergen, it just didn't work out for him...the last time he treated was 3 1/2 years ago now...he's 64 and his last biopsy was a 3 as it was years ago...he's waiting on the new drugs and other then that, just going on with his life...I know others with similar stories, some cirrhotic as well...one of the only good things about this disease is it is slow moving for the most people...keep that in mind if you can and enjoy some time off...my two cents....
I mention it because I already have 4 friends on the stuff...one of them was able to get a six months supply from the pharma co itself because she filled out some hardship papers....it is expensive...one thing Susan, this drug is for a particular type of diahrrea(I never know how to spell that word!!!) and none of them, so far, have reported worse then normal constipation issues...if you were to try it (as everyone here knows, ad nauseum) I sure know a helluva lot of ways to keep your plumbing going smoothly...
In reading Jim's concerns (which seem, at this point, inconclusive) maybe this would be a good drug for maintenance? to keep the little suckers at bay at least? if nothing else...I believe Kalio brought up a good point in the thread that hep c duplicates(?) (busy right now and can't remember the word she used) mostly in the intestines? this would make sense if it were true...I agree with most here that it sounds like you should give your body a break to recoup and regroup...sometimes we have to measure the cost/benefit of going on with these drugs at some point...if you want updates on the women taking this drugs, two are on Janis, one named Boomer and the other Shiela....
Not to start a prairie fire here, but I do know a lot of people who were non-responders, relapsers, years ago now...and they are just going on with their lives and they are not *particularly* ill with this disease, not everyone graduates to pre-transplant status on some type of rapid timeline...
just spoke to one of my friends, he's a plumber and still works 4 days a week, tried the treatment 3 times, then the infergen, it just didn't work out for him...the last time he treated was 3 1/2 years ago now...he's 64 and his last biopsy was a 3 as it was years ago...he's waiting on the new drugs and other then that, just going on with his life...I know others with similar stories, some cirrhotic as well...one of the only good things about this disease is it is slow moving for the most people...keep that in mind if you can and enjoy some time off...my two cents....
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