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telprivar relapse
I posted this morning about my husband being told at wk 24 he had not met the req. to continue in they study or he had e RVR. We know he was non detectable at week seven and have been told up to that point that he was doing "the best in the study" all his levels that they did give to his Dr were great. Monday we went in and was told he relapsed and was only going to do the follow up. I have read all the paperwork from Vertex and do understand that they can stop the treatment for two reasons : one you have relapsed or you have no dectable level in you system and they are just monitoring you for the next 48 wks.  They also say you will remain on treatment for the full 48wks either way unless you are clean.I am not sure if his Dr just said he relapsed at this time because we did get blood work done at 7 wks and told him he was clear by the outside testing. We are getting him tested asap either way. I just don't understand because this is a double blind study and his Dr does not have the actual results....
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When was the first time you disclosed your outside testing to anyone associated with the trial? Was it before the doc told your husband about  finishing tx at 24? Or was it  only afterwards?
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I am totally lost on what you are saying ........very bad with texting too LOL...
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was disclosed "Off the record" before he was told about finishing at wwk 24
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Stats for my Husband: 53- Naive for treatment ,3-4 stage for liver disease, found out 9 yrs ago had hep-c
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So you're just going to have to wait, since it could be one or the other in respect to why he stopped at 24.

The doc doesn't appear to know what's going on, so I wouldn't take his 'relapse' talk to heart (not that anyone can be level-headed in such an ambiguous situation).  

BTW, did the doc break protocol by saying you 'relapsed' when he was required to not specify anything other than what was in the letter?

I'm with Zazza and the others who feel hopeful.
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if viris was neg at week 4 or sooner and then again at week 12 and remained that to week 24 done with treatment
if viris neg between week 4 and 12 and remains so you go to 48
if on placebe must have 2 log drop week 12 or done then must be neg week 24 or done
any viral break through you our done i hope i have explained it i am a little brain dead right now in week 17 i dont think would drop you for your own testing i was told to reduce rib after dec 30 test and took some advice given here and had my own cbc done wich i gave to hospital  never dose reduced any was able to carry on
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your husband could very well been neg week there is another here same trial as you went fron 10 million to neg i believe week 3
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Thank you... keep up with what you think is right for you.. 9 yrs ago when my husband was fist diag. the treatment was three shots a week and alot more riba. than now so do what you feel is right for you. He started at 202 lbs and is now at 170lbs they never wanted to change his meds. Keep up the good work.

Not to blow smoke up my own butt ----my Hubby's Dr wanted to know what I was doing for him to keep him so healthy. said he did the best out of the whole group when it came to keeping his "good" levels up. Let me know if I can give you any "tips" and all the best for you in getting to neg....
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the scary part for him was his viral load was " Very" low yet he was border line for stage 4 liver disease. What I have learned is that the faster you respond the greater your success rate for cure. I know that he passed the protocol for week 12 also it is just strange how they word things and how they keep you in the dark for s much of this but if the telprivar works then it will be worth it for so many people.. I wish you all the luck in the world and anyone else going through this
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thank i may need some tips i also treated with intro 3 shots week t rib i found it nastier then this i am very lucky this time around my neighbour is a nurse and comes over every tuesday to give me my shot and stepson does all grocery shopping even cooks me dinner 3 times week  be well deb try not to stress
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kinda makes you feel like a mushroom keep you in the dark and feed you alot of s**t.
Make sure you eat well it is so important..Drink alot of water and if you can find it drink the orange vitiamin water it helps keep your immune system up.

I know the Dr kept telling me he wanted to talk to me after the study because my other half did better than everyone else so he wanted to know what I did for him. That being said. If you want I have my own ideas as to what to eat and what to do to make it as easy for you as it can be. Let me know if you need anything ***@**** it probably the best way to get me.. Good luck
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The only way you are going to know for sure before the end of the trial, which won't be for some time yet is to get another PCR and its results as soon as possible. If it comes back und, you'll know he responded, if not perhaps you can convince your Doc to put him back on tx with peg intron immediately.
I find it confusing that your husband was on Telaprivir for that long, the study calls for it to be given only for 12 weeks. If he did only recieve Telepravir for 12 weeks and a further 12 weeks of SOC, he would have been in the active comparator arm and there is a good chance that he was taken off tx at this time because he remains undetectable.
Evangaline
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thats what i think
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If he did only recieve Telepravir for 12 weeks and a further 12 weeks of SOC, he would have been in the active comparator arm and there is a good chance that he was taken off tx at this time because he remains undetectable.
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This is the most likely scenario.
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I know what you are saying ,we are trying to get his blood tested but he is out of state and we need to make sure we get it done right. In th teleprivar study you don't know which drugs you are given. He may or may not have gotten the test drug at all. But with the test result at week 7 we are believing that he got it. It will be a weight off our shoulders to know either way once he gets some sort of blood results and then we can take it to the next level. His Dr. on Monday refused to let him continue on the standard treatment and said we had to return all unused drugs. At this point it is a hurry up and wait. Unfortunately....
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You are a saint if anyone can make someone use their brain and not let the negitive things take over it is you......I think I agree with you totally and I know in my heart you are right. Sometimes we tend to let people confuse us to what we know is righ... I do feel so much better
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Debbie: He may or may not have gotten the test drug at all.
--------------------------------------------------------------------------------------

Debbie, Is this your husband's study? If so, EVERYONE in the study gets the treatment drugs. There is no placebo. I'm not being overly optimistic, I've just read the study protocol.

http://clinicaltrials.gov/ct2/show/NCT00758043?term=treating+AND+ervr&rank=1
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if monday was 24 week test would not have viral loads possibly week takes longer for mine if neg week 20 they would tell him quit week 24 regardless if test not back it would not matter if neg he would quit if pos he would quit  if placebo arm would need results before told either way  
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As far as I understand and as it reads in the Informed consent form there were to be three groups one received the standard treatment and placebo-- one group 8 wks teleprivar and standard---one group 12 wks telepivar and standard treatment....Rapid response was what they were looking for the sooner the better as it was said to us... We know for sure he was clean at 7 wks. he met the criteria for weesk 4 and 12.... after that at weeks what would actually be the first injection of his 25 shot he was told he " did not met the neccary Week 24 criteria to continue study treatment or had an eRVR. This subject should discontinue all study treament and continue per protocol
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If you really read the protocol it states that if you were undectable at wk 24 you stopped treatment. they cover themslves by also stating in the next paragraph that the study Dr can stop treatment after wk 24...
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92903 tn?1309908311
Seems very probable to me that the dude was stopped because he's UND and did enough. Not to put too fine a point on it, but a VL recorded while on the drugs is a breathrough, not a relapse.

Breakthroughs on PI's alone are common. That's why the poison was added back into the cocktail. Debbie - my crystal ball sees Crystal... Crystal champagne for you and your dude when you get the good news.  Good luck.
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thanks so much for you well wishes I just wish you really had a chrystal ball cuz I have alot of questions
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My 2 cents.

The doctor cannot tell you the viral loads.  They can only run the trial as Vertex contracted for them to do and your hubby agreed to do when he signed the consent form.

I think a lot of this has come from fuzzy communication.  The first thread said relapse and suggested that the trial end was due to the relapse.  I think it was suggested at the end of that thread of the POSSIBILITY that the trial ended simply because the hubby was done dosing and in an arm which only went 24 weeks; not a failure at all.

None of us know; only the doctor or NP can tell you in the special way that they must that hubby is done for one reason or another.  Either hubby or both of you needs to get the message clearly....as clearly as they are able to tell you.  You understand that they are NOT permitted to tell you certain things, as it would unblind the study.  You need to be very careful to understand what they tell you and not misinterpret it.

Rebounding in the middle of a study may mean no continuation of treatment.
Being in the 12 or 8 week triple therapy arm and being randomised into a 24 week total treatment time means the same thing; no continued treatment after 24 weeks.  You see....the end result is the same but there is a hell of a difference isn't there?  Complete failure versus a likelihood of success probably on par with 90-95% (if one eRVR'ed).  

One other thing that I'd warn you about is that the reason that these trials are blinded is that they don't want people unblinding the trials.
That means..... you should probably not be posting such information if and when you get it.  That is part of the agreement that hubby signed.  

Lastly, I would also suggest not naming names or hospital locations for obvious reasons.  These trials can be a wonderful thing but one has to take care of them.  

Everybody has had good input but I think that some of this may have been avoided with a little more clarity about what was actually communicated.  (and having said that I don't know what was communicated)

By the way..... this didn't happen in other trials since the blinding process is longer and more complete in this trial.....or so I believe I understood. Other trials were unblinded as people went along; not immediately but maybe in 12 week increments.  This one is to remain (or the origional intent was) blinded until the SOC arm ends  (that's about either 12 or 18 months if they figure waiting for 6 month PCR's) which will place a lot more stress upon the participants (and I'd also guess the doctors as well).

Sorry if this sounds like scolding a little bit but you have to be careful what to reveal/post here.  I have a feeling that you will be able to deduce where he sits fairly soon.  

A private PVR will show if he is positive or not.

If he was clear at 7 weeks but experienced viral breakthru (as proven by the PCR)..... there probably isn't much that can be done except stop TX.

IF he was clear at 7 weeks and is clear at 24 weeks I'd venture a guess that you are in good shape, eh?

How many more options are there?

best,
Willy
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well I understand your reasoning here but I did not sign the agreement and actually to be honest-- whether or not I say where the treatment took place is not even on my mind. It is my and only my opinion that the way in which it was handled---- it was WRONG... I know that by going outside the trial was not what they wanted but then again what they subject you to in reguards to what you go through during the treament is not at all what they tell you to expect. The actual percentage and what you as an individuale go through are not what is on paper. I know that as the "caretaker" for lack of a better word go through is just as hard as what the patient is going through without the actual symptoms.

I guess for lack of a better way of putting it I have been put through hell for the last few days and I think that there is a better way of putting it to patients without Ripping their guts out to say they failed. Especially when you have nothing to base it on.. And you want me to be careful as to where I say he was treated. Please let them come to me and say I did something wrong then we will see....

you seem to know enough to know that the next round of treatment for people who fail the protease inhibitor is not what you want to look forward to....
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In the first naive trial the 2 triple therapy courses of treatment were to be a total of 24 weeks.  IF the patient were a slow responder then the doctor could continue treatment (it would be SOC; not any form of triple therapy) for up to another 24 weeks.  the doctors could stop TX during that period for reasons either medical need or simply because the patient wasn't responding.

It was the SECOND phase 3 naives trial in which patients were randomized into 24 and 48 week groups (not the this one).

So....in this trial all successful triple therapy participants would stop at week 24.
Only placebo arms and slow responders would continue beyond 24 weeks.
It may be an uncommon use of the words and wording but......

If you don't "meet the criteria to continue" that might mean that you cleared and have stayed clear; since only SOC arms and the triple therapy slow responders can continue beyond the 24 week mark.

Does that make sense to you?  I don't know what they said but this is one more spin on it....just different wording of what has been suggested earlier.

best,
willy
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I do know what you are saying but all I have been through since Monday and the total inhability of the Dr to give any answer beyond you relapsed, has been a hard thing to take..
I do consider myself to be a reasonably intellegent person but that comment coming out of left field so to speak was mind blowing to say the least.
You can put so many "twist" on things to have it come out the way you want it can blow your mind. I do understand that he may be one of the " LUCKY" ones that achieved a rapid response and maintained a undetectable viral load. That is what not only vertex wants but as a patient you also want that. The options as to what you are left with if you did in fact receive the real drug are not something that I would wish on anyone. But then again what choice are people left with.. I have gone through a gambit of emotions from wanting to die for him to feeling like I have lost my mind to anger, to wanting to fight like no one has ever thought of.
At this point I don't care if by me saying where he received treatment is a big deal--- no one should have to go through this and if it means me bringing this to peoples attention and them changing the wording then so be it. My hope for him and anyone else going through this or any other type of treatment for this is that they get the type of treament they deserve and not just be treated like like some type of lab rat.
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Part of what I'm saying is that I don't want you stressing without need.

The vast majority of success cases in the Vertex trials will all have to stop at week 24; only the slow responders and SOC patients can continue beyond....at  least as I understand it.

I guess my question is if you are sure they said he failed....or you are interpreting that?  I can kind of imagine the state that you are in.  I've been in a similar frame of mind when I was DX'ed or while waiting for results of my kids PCR's.  A week is a long time to wait; an eternity.

All that I am suggesting is the possibility that this could be good news and not bad news.  All I am asking is that he get back with the doctor and make sure of which it is.  I have a feeling that only the successes will be shut down at week 24.  IF a person "failed" I don't even know if they will tell them that at the time.  For that reason I am wondering if he was actually told that he failed TX.  

If he was a slow responder he would continue treating.

If he has experienced a breakthrough they may not tell you but you can determine it via outside testing.  If he experienced a breakthough I'd guess that he is done treating no matter what.

Does this help or is it making you feel worse?  I feel as though what I have communicated may mean some hope..... but if they flat out says he failed TX then I haven't much more to add.

I'm sorry that this is stressful but it is not yet clear to me that he "failed".

best,
Willy
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you have been at this all day and  nite  get some rest no worries best wishes good nite
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I am sorry to be taking this out on you there is no excuse for this and I do apoligize. When we went into his appt. on Mon. his Dr. told him he had relapsed and was to stop all ************** meaning the rib. and the alpha inter. We went outside the test study at 7 wks and had his blood work done at that time we were told his was a 0--- no detection of the virus in his blood. this was told to his Dr. at one point "off" the record.  This was several weeks ago seeing he was told to stop treatment at the start of 25 wks.

It is stressful and as a parent and grandparent my heart goes out to you I know what it is like to wait I had to wait 5 day for cancer results and I do know what that can do to you..

I know they can not tell him much in order to keep this a blind study but I also know there are better ways of dealing with these types of things..

Again I do apoligise for my total lack of patience with you but this and finding out my Mom is dying in less than three days is a bit much for anyone to take.. Please forgive me...
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Thankyou for the concern but I started this before work and now I think after all you might be right.... I think I need some sleep it has been a long 4 days......Thanks
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You wrote;
"the total inability of the Dr to give any answer beyond you relapsed"
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If that is what they said then I don't think there is much room for many interpretations.

Get the PCR and prove it yourself.  If there is a viral breakthrough there are several possibilities

12 weeks of triple therapy  followed by 12 weeks of SOC yields about a 70% SVR rate.  that means about 30% fail.

In all likelihood 8 week triple therapy arm may have a lower success rate..... but we don't know that.  8 weeks may be as effective as 12 but could see a lower drop out rate.  We don't know yet.  Assume a 30% failure rate here too just for ease.  Any of the failures may be have less success with treating with PI's in the future; we don't really now about that yet.
The third group could be SOC null responders or breakthroughs that they decide not to treat into the extended arm.  He may be a part of that group as well.  In his case if he is in the SOC arm you have proven that he is a responder and in all likelihood if he had been on a triple therapy arm he may have had success.  That means if he were to treat with PI's the next time he may be fine.

I am very interested.... trying to explain things.  If he failed it is of course a tough thing, a scary thing but it in all likelihood is not the end.  

These trials are tough.  The blinding process makes them very tough and this one has a VERY long blind period.  I hope that you are not in the dark much longer.  I will float out the possibility that once you know more you will feel better.  Not knowing is very hard.

I've got to turn in; work tomorrow but just wanted to see if I could make some things more clear.  I may not be able to make them better.  If I could.....

best.....

Willy
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And don't worry..... I took no offense.  I understand that this is a tough period for you.

I am also very sorry to hear about your mom.  I just lost a friend my age a few months ago to cancer.

No worries...there is nothing to apologise for.

Willy
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I'm still confused about the 7 week PCR and why it was done.  I did a trial this year PI and PCR'd every week for 4 and then fortnightly to week 8 and one at 12.  If UND at 4 or before (eRVR) then why was the week 7 necessary?  Bad doctoring, bloody disgraceful communication, but extremely common with busy research facilities.  Fingers crossed that tx was terminated due to RVR and only needing 24 weeks as per protocol.  He could roll over to SOC and do another 24 weeks??.  A PCR now is so crucial. Best of luck and hope everything turns out SVR. Emi
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I was going by the consent form in my study which seems to be different. I'm in the "open label" study where everyone gets telaprevir for 12 weeks. The way I read my consent form is they will use week 4,12 & 24 week pcr;s to dertermine continuation. You can be randomized to 48 weeks even if you are RVR at 4 and still UNDE at 12 & 24 weeks. If you still have detectable virus anyrtime up to 24 weeks you continue to 48 weeks regardless. But "everyone" stops at 24 weeks if virus still present. They will not even consider a pcr from another lab, only their cettified contracted lab.
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Debbie,

I'm sorry to hear about your mother's imminent death. Maybe this is contributing more than anything else to your flurry of emotions. Shouldn't you be spending time with her in her final three days instead of single-mindedly worrying about your boyfriend?

Since you imply you yourself are a grandmother, your consolation is that she's lived a long life and is a great-grandmother.

What does your boyfriend say about all this? I know you've been looking after him devotedly but was he there at the meeting when you say the doctor said he 'relapsed'? Does your boyfriend agree with you that this is exactly what the doctor said?

I find it puzzling because

1) the doctor was bound to say nothing at all and
2) he doesn't know, anyway and
3) he would have used the term,  'breakthrough',  not 'relapse'.

So maybe your boyfriend and you need to both confirm what he said because he was supposed to have said no such thing and frankly couldn't have known. It's either his mistake or yours, so first get to the bottom of that.

Does your boyfriend share the same anger and sense of grievance about the trial that you do? Is he equally willing to bad-mouth it publicly and break the terms of agreement? Did he sign the agreement or did you sign it together? Does he know you are disclosing personal information about him in a public forum that could unblind a blind study?

Personally, I think you are overstepping your rights unless he fully agrees with your point of view about trashing the trial. He should have taken the time to understand what he signed up for and maybe he did. I wish he would weigh in.

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179856 tn?1333550962
I am sorry to be taking this out on you there is no excuse for this and I do apoligize. When we went into his appt. on Mon. his Dr. told him he had relapsed and was to stop all ************** meaning the rib. and the alpha inter. We went outside the test study at 7 wks and had his blood work done at that time we were told his was a 0--- no detection of the virus in his blood. this was told to his Dr. at one point "off" the record.  This was several weeks ago seeing he was told to stop treatment at the start of 25 wks. "

Two different things:

Deb, you have to find out the sensitivity of the test that you got OUTside of the test study - if perhaps say it was a test that tested to <615 but the trial test went to <50 - if he had a count of 400 then he would 'appear' to have been UND for the 615 test but not really be.........but by the <50 test he would come back positive.  This is a VERYimportant part of the equation that you need to find out.  You should be able to just call the outside folks and ask them what was the sensitivity of the test?

It happened to me which is why I know it is possible.....had my doctor not gotten me a sensitive test my 411 at week four would have appeared to be a true UND but it was not. so later if I had a higher sensitivity at say week 10 but the first test came back UND <615....I would have been shown to HAVE HAD BREAKTHROUGH when in reality I was never truly UND at all, so it's not a RELAPSE. Relapse is for AFTER treatment is over.

Unfortunately I doubt the doctor would say that he had RELAPSE/BREAKTRHOUGH if he had not, but I would want to retest that test just to make sure somehow it wasn't a false positive and that the scenario above is not what happened.

Good luck.....one way or the other find out what the sensitivity of that 7 week test was that should maybe give you a hint of what is going on? There is a big difference between breakthrough (meds stop working) and relapse (virus comes back after drugs are discontinued and the person was never TRULY UND at all)

Deb

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Your mother is dying within the next two days.  Wouldn't it make more sense to put your boyfriend's situation on the back burner while you spend time with her?

He's a 1A, treating for the first time. The results are what they are, despite the confusion and trial secrecy.  Last minute emergency testing will not change the results. The cards are dealt and you've done your best. Pat yourself on the back for looking after him so well.

Front and center is that your mother is dying within the next two days. She needs you. Your boyfriend will understand if you set aside your perceived urgency of his situation to be with her instead. Sensitive testing can surely wait - it won't impact the outcome since the outcome is a fait accompli.

A mother only dies once.
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I sent you a note and hope you read it. To everyone else I am NOT trashing the study. I have been involved with it since day one. I know what the Dr said and How he said it. These studies are a wonderful thing and desperately needed. I am just upset with the handling of it. As far as breaking the terms of agreement you are wrong. I didn't sign anything and I am not trashing it. I was aking questions of people because the Dr could not answer mine. Do not assume you know my situation and where or not I am a Grandmother and where I need to be spending my time and with whom... I did say she was dying I did not say in three days. The three days came by finding out she is ill and getting the info exactly the way I first stated by his Dr. Two bad things in three days. My husband is also concerned as anyone in these groups about relapse. And I am not unblinding the blind study I am tring to get some information that is all
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i agree with portan well said god bless hope you can find peace
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388154 tn?1306365291
debbie i just wanna suport you in this stress youve been in, theres is no exuse for the doc to say your husband has relapsed in that unclear way which he probably hasn`t (relapsed that is) anyway.

I my self know what it is to recive such a message "you have relapsed" .

Chock and stress noone who hasn´t been there not even can imagen.

And about if you should have unblinded any studie I think its very unsensetiv to even mention this to you in this stressful time.

If somebody wants to warn educate others about it they cold very well open a thread about not to  unblind studies in a couple of days  when this have calmed down a little for you.

I don´t know what i would have done if it was me how have been treated the way you have been.

Slapping is the least for that doc in my opinion, and about what you have said here on forum you have nothing to apologise for, some others owe you instead in my opinion.

ca

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To put an optimistic spin on things, if someone from the trial, or from Vertex is reading this -- and I hope they are -- perhaps they will put more of an emphasis on clearer communications not only between doctors and patients, but between the trial organizers and the doctors who actually run the trials.

This is not the first time we've seen massive confusion in and trials run by Vertex. And the confusion, as often as not, has been with the doctors and their staff, not just the patients. It's one thing when a patient here posted on understand this or that blood result. It's quite another thing when the NP who runs a study also doesn't appear to understand.

These trials use some very powerful drugs, and while we as patients potentially benefit from the drugs being tested, we are also offering ourselves up as guinea pigs for the drug companies. But the fact is we're not guinea pigs, we're real human beings with children and families, and we should be treated that way, especially in a drug trial setting.

-- Jim
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Thank you and everyone for thier well wishes in ALL of this. I didn't mean to come off bitter or angey---upset yes. but I am still hopeful for my husband and also for my mother. It is just alot to take in in such a short time and the not having educated answers are the worst- I understand the Dr's position and I do after beating my brain and reading over and over everything for the study and talking to people here and others that it very well can be a good thing and his Dr may be wrong or just misinformed at this time. It just is what it is and only time will tell. Again Thank you all
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Sometimes I really don't think medical professionals -- the doctors or nurses -- have any conception of how much their their communications can make in a person's life. I'm sure all of us have been in a position at one time or another where a simple phone call -- maybe five minutes out of the doctors time -- would have been enough to clarify an important issue that has caused us significant stress. And why is it that it is so often so hard to get that phone call, to get that five minutes? They should understand that they went to medical school, we did not. So if you have to explain things twice, or even three times, or in a simpler manner, then that should be part of their job. And if they can't do it, they're not doing their job. What we see here are all too often or medical professionals not doing their jobs.
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This thread takes too long to load.  : )  

Jim; I was rather impressed when Vertex announced way back that this entire trial was to remain blinded the entire time; even for the SOC component.  I don't know if current plans call for it remaining blind until SOC dosing ends or the ultimate end; 6 month PCR's for the SOC control group.  Please note..... I said that I was impressed.....not that I agreed with the decision. : )  I'll tell you....Wall Street was not impressed with that call; the stock promptly started dropping in value (about 16 months ago).  Why?  It seems that Wall Street doesn't just want to plunk down the investment dollar without some occasional feedback as to how the drug is doing.  The fact that Vertex decided to design the trial this way could be in some way to assure compliance in the strictest standards with what the FDA requires for approval.  Hey; they may be going over the top but they are trying to run a very tight trial.  It's one reason that no rescue drugs were allowed in Phase 2 where other companies DID allow them.  The intent is to get FDA approval ASAP and to minimize as many obstacles as possible to that goal.  I'm merely trying to point out that blinding of these trials is required and the more that they are unblinded the more that the trial is undermined.

I'm not sure exactly in what way a doctor can reveal some information if it runs counter to the trial design.  For the sake of argument if a doctor somehow did and that information made its way here it would probably not be a good thing.

I think that a certain level of discretion is required here.

I don't know exactly what was communicated .....and so it does not seem fair to judge a doctor or the trial process.  I think it does seem safe to suggest the PCR or further communication with the doctors but since none of us really knows what happened.....exactly.... it seems prudent to reserve judgement.

I also happen to believe that some discretion in leaving out information where one may be straddling the edge of compliance is a good policy.  I think it protects both parties more; both the doctor/facility and the treating trial participant.

Sorry, it's a touchy situation but I think actions (such as a private PCR) or further communications will bring it into focus relatively easily and quickly.  

best,
Willy

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I didn't mean to leave the impression that the doctor should reveal anything that he was not authorized to. It's apparent from the lonely this thread, but from others, as well as my own personal experience, the doctor patient communication is often abysmal, not to mention the the written communication Debbie received from the trial. It could've been written in simple to understand English, which may have answered all the questions were not discussing. A doctor can still take the time to explain the situation clearly, even if he cannot divulge certain results.

Jim
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I agree with you totally. the Dr does not have info so for him to assume that the only reason he is stopping was because of a relapse was wrong. It was his interpretation of the letter but if you read the study it isn't much clearer. It could have been said that there are several reasons you are stopping , this is what they are and lets hope for the best.. That would at least give you hope and not take the wind out of your sails totally. Especially for the person that has just completed the drugs. Doing that alone is tough enough...
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232778 tn?1217450711
"by jmjm530

Sometimes I really don't think medical professionals -- the doctors or nurses -- have any conception of how much their their communications can make in a person's life."

I think its important with doctors to cut them a bit of slack. Lets face it, many of them have spent most of their lives studying - instead of socializing like the rest of us. Additionally, they have to put up with sick people all the time. While in an ideal world we would have wonderful, well socialized individuals as doctors, if we had that, and they had spent all their time trying to become that, then they probably would have the knowledge to know what they are ****.
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I must say somethiing in Jim's defense..... Dr's don't have to be the most soialized people in the world but  a little compasionate would help.. They are not in the feild because they hate what they do just a teacher picks teaching. They do it because they want to and it is not all work and books for them always they do believe it or not have wonderful social lives-- at least the Dr's I personnally know I again can't speak for every one but compassion is something some need to work on..
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"Especially for the person that has just completed the drugs. Doing that alone is tough enough..."

This is so true. After I completed tx I needed a month or so just to feel the relief of being off the drugs. First after that was I ready to take a peek at what the results of my efforts on tx might be. Putting so much effort and time into a result unknown is scary, and I needed to rebuild some mental and physical strength first in case the result was not good.

I truly sympathize with you and your husband. But I also believe there will be a happy ending for you, and that is what is most important. You said he had a low baseline viral load, and the majority of these patients do get SVR as long as they get a proper treatment in accordance to their treatment response.
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moa: I think its important with doctors to cut them a bit of slack. Lets face it, many of them have spent most of their lives studying - instead of socializing like the rest of us. Additionally, they have to put up with sick people all the time.
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I don't know about this. I've had some good friends who were docs. Even dated several. And they seemed to socialize just fine. I suppose life would be easier for them if none of us were sick, but then how would they afford the big homes and fancy cars? I'm sure many going to the profession because it's helping profession, and honestly, that's not why most of my peers went into the profession, at least not the ones I got to know. It was very simple. They spend X. amount of time in school and they came out with a big fat salary for life. Nothing wrong with that, I'm just saying stand a little more time dealing with patients needs, you know earn that salary.
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