Aa
Should introduce myself
Hi....Having been reading and posted only twice..I think....I should introduce myself and ask some questions.
I was dx'd with hcv at the end of 2000, started tx at the end of 2001 with hcv 1b and stage 3.
Slow or guess what is called null responder now and unsuccessful.
I was also one of the ones where the treatment was the worse and with permanent damages.
However..if I had a good doc....It was impossible for me to distinguish anything from the first shot and pills as I had literally lost my mind and to this day can recall 99% of that experience.
As it turned out...the hep doc was doing a 'study' for the drug company which was revealed to me near the very end of treatment and with my grown son, confronted the hep doc. It was true.
Upon reading my labs and reports..I don't recall getting copies of everything but somehow did...thick piles of papers..and looked through them to this day as my memory was/is in bad shape also since the tx.
The doc was getting ..as he called them..'stipends' for a study...took my son some numbers of times of questioning to get a straight answer from him..denying, then saying yes..catching him at inconsistancies, etc.
I also noticed the horrible blood work /labs and did not get any kind of 'rescue' meds that would have helped possibly.
I was as if in a trial...no rescue meds..only monthly blood draws...how I even managed that is something as I was not in my right mind and so sick.
Do recall, not even being able to remember my name, address, phone number..I kept my dayplanner with me at all times...contained notes as well, I didn't remember even writing so must have constantly looked to pay bills, see docs, etc.
I should have been withdrawn from treatment or another protocol done..as I have read that at week 24, the viral load was down to 300. Do recall coming out of the tx fog for a while then and was eating more.....got more energy..I think haha..do not remember.
When getting some cognitive abilities back after tx, I wrote to Dr. Cecil and he responded immediately. He told me that it's not unusual that docs will do this kind of thing and that he would have switched me to infergen for a bit and then to another pegylated treatment and for a longer period than usual time..which is not so much unusual these days..Pegysus/sp. He thinks i would have had gotten a svr and probably would have stayed in remission..at least for a very long time. I say...as long as that didn't kill me lol.
The 'bad' doc did tell me at end of treatment that I would need to try again, go on maintenance or look forward to a transplant or death in 5 years. that's this year lol...he also said that when i was diagnosed..do the treatment...and he was not the first hep doc to say that..as I had gone for second and more opinions.
Even at with best hep doc around here at a teaching university in the big city near here. As it turns out after hearing of others experiences with him..to this day..he's not all that great nor caring either.
That said...I do entertain the idea of TRYING to get into the coming trial...but why is there an 'arm' without the vx-950 since it's for ones like me and non-responders..and relapsers?
Anyway....I finally have recently found some good doctors after going through so many. There may be hope still.
I have done some work for an activist hcv, hiv and other health related issues site, as a researcher,on the board and forum administrator...but got too tired spending so much time on the computer and have so much else to do and deal with....my own health, taking care of aged mother, running the household and then some.
I was very healthy prior to the tx even though with hcv and it isn't uncommon for people to feel this way, I know, even until end stage.
Am hoping to be a positive addition to this group and to gain more insight and knowledge from all of you.
Thanks for reading..and thanks for the info, sharing of experiences and opinions..as i've been reading for a number of months now.
Canary.....in the coal mine :)
I was dx'd with hcv at the end of 2000, started tx at the end of 2001 with hcv 1b and stage 3.
Slow or guess what is called null responder now and unsuccessful.
I was also one of the ones where the treatment was the worse and with permanent damages.
However..if I had a good doc....It was impossible for me to distinguish anything from the first shot and pills as I had literally lost my mind and to this day can recall 99% of that experience.
As it turned out...the hep doc was doing a 'study' for the drug company which was revealed to me near the very end of treatment and with my grown son, confronted the hep doc. It was true.
Upon reading my labs and reports..I don't recall getting copies of everything but somehow did...thick piles of papers..and looked through them to this day as my memory was/is in bad shape also since the tx.
The doc was getting ..as he called them..'stipends' for a study...took my son some numbers of times of questioning to get a straight answer from him..denying, then saying yes..catching him at inconsistancies, etc.
I also noticed the horrible blood work /labs and did not get any kind of 'rescue' meds that would have helped possibly.
I was as if in a trial...no rescue meds..only monthly blood draws...how I even managed that is something as I was not in my right mind and so sick.
Do recall, not even being able to remember my name, address, phone number..I kept my dayplanner with me at all times...contained notes as well, I didn't remember even writing so must have constantly looked to pay bills, see docs, etc.
I should have been withdrawn from treatment or another protocol done..as I have read that at week 24, the viral load was down to 300. Do recall coming out of the tx fog for a while then and was eating more.....got more energy..I think haha..do not remember.
When getting some cognitive abilities back after tx, I wrote to Dr. Cecil and he responded immediately. He told me that it's not unusual that docs will do this kind of thing and that he would have switched me to infergen for a bit and then to another pegylated treatment and for a longer period than usual time..which is not so much unusual these days..Pegysus/sp. He thinks i would have had gotten a svr and probably would have stayed in remission..at least for a very long time. I say...as long as that didn't kill me lol.
The 'bad' doc did tell me at end of treatment that I would need to try again, go on maintenance or look forward to a transplant or death in 5 years. that's this year lol...he also said that when i was diagnosed..do the treatment...and he was not the first hep doc to say that..as I had gone for second and more opinions.
Even at with best hep doc around here at a teaching university in the big city near here. As it turns out after hearing of others experiences with him..to this day..he's not all that great nor caring either.
That said...I do entertain the idea of TRYING to get into the coming trial...but why is there an 'arm' without the vx-950 since it's for ones like me and non-responders..and relapsers?
Anyway....I finally have recently found some good doctors after going through so many. There may be hope still.
I have done some work for an activist hcv, hiv and other health related issues site, as a researcher,on the board and forum administrator...but got too tired spending so much time on the computer and have so much else to do and deal with....my own health, taking care of aged mother, running the household and then some.
I was very healthy prior to the tx even though with hcv and it isn't uncommon for people to feel this way, I know, even until end stage.
Am hoping to be a positive addition to this group and to gain more insight and knowledge from all of you.
Thanks for reading..and thanks for the info, sharing of experiences and opinions..as i've been reading for a number of months now.
Canary.....in the coal mine :)
What a lovely flower, canary yellow!
I too have had lowered platelets since tx and relapsed.
Even with the best of doctors, so much is unknown about hepC that many do indeed land up in worse shape than prior to tx, and many have significant improvement.
No matter what came before we can only look forward for what to do now.
I wish you much luck in clearing the virus.
OH
I too have had lowered platelets since tx and relapsed.
Even with the best of doctors, so much is unknown about hepC that many do indeed land up in worse shape than prior to tx, and many have significant improvement.
No matter what came before we can only look forward for what to do now.
I wish you much luck in clearing the virus.
OH
Welcome to the forum, Both new P I's, telaprevir from vertex and Boceprevir from schering-plough are soon starting a new trial for non-responders and relapsers, both trials will treat for 48 weeks.........Best of luck to you.
cando
cando
Thank you for the welcome!
Elaine there is a trial to be had with the vx-950...one is a monotherapy of short duration, phase 1...however, this was already done in Denmark and Sweden.
I think that they all cleared...the duration of treatment was 12 weeks....but all but one relapsed in time. Haven't found any further info and longer trials as of yet.
Then there is the one with Pegysus...Both are not yet recruiting. Think it's next year.
The combo is for those who the treatment failed...slow reponders, non-responders and relapsers.
The big thing for me are the low platelets. That was an exclusion in the last trial.
Treatment did that to me too..low platelets... and never went back up to the normal numbers had, prior to tx.
This year, I was able to raise them significantly with herbs and supplements...all docs were astounded and wanted to know what I was doing. Can't pin point one as I was on a number of things. Am giving the body a rest from most supplements and herbs now.
The numbers do fluctuate but mine shot up very significantly....maybe I can get them into acceptable range with supplements and meds and other medical issues 'taken cared of' before trying to get in? A long shot probably but will try.
As far I can see, the tx is still being studied as there is much not known and still being discovered. Some if not much being disclosed as of yet, seems to me.
More will be added to the 'black box warnings' as time goes on, in my opinion.
Since my own experience, that is what happened, so guess, considering all the sides and also permanent ones..and new ones surfacing as time goes on...whether svr or not.... are now being openly expressed by those who did or are on treatment...which is a good thing.
Creation itself is wondrous..beautiful...and sad and sweet,,,,,,
Nothing....can blind me from it.
Thank you again..so very much. And hope you all are doing well?
Canary
Elaine there is a trial to be had with the vx-950...one is a monotherapy of short duration, phase 1...however, this was already done in Denmark and Sweden.
I think that they all cleared...the duration of treatment was 12 weeks....but all but one relapsed in time. Haven't found any further info and longer trials as of yet.
Then there is the one with Pegysus...Both are not yet recruiting. Think it's next year.
The combo is for those who the treatment failed...slow reponders, non-responders and relapsers.
The big thing for me are the low platelets. That was an exclusion in the last trial.
Treatment did that to me too..low platelets... and never went back up to the normal numbers had, prior to tx.
This year, I was able to raise them significantly with herbs and supplements...all docs were astounded and wanted to know what I was doing. Can't pin point one as I was on a number of things. Am giving the body a rest from most supplements and herbs now.
The numbers do fluctuate but mine shot up very significantly....maybe I can get them into acceptable range with supplements and meds and other medical issues 'taken cared of' before trying to get in? A long shot probably but will try.
As far I can see, the tx is still being studied as there is much not known and still being discovered. Some if not much being disclosed as of yet, seems to me.
More will be added to the 'black box warnings' as time goes on, in my opinion.
Since my own experience, that is what happened, so guess, considering all the sides and also permanent ones..and new ones surfacing as time goes on...whether svr or not.... are now being openly expressed by those who did or are on treatment...which is a good thing.
Creation itself is wondrous..beautiful...and sad and sweet,,,,,,
Nothing....can blind me from it.
Thank you again..so very much. And hope you all are doing well?
Canary
Welcome to the forum and thank you for sharing your story. It is heartbreaking to hear that there are such incompetent, cunning doctors. I pray that you will be able to find the right treatment option and will kick this dragon forever.
We're all her to support you!
Marcia
We're all her to support you!
Marcia
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