VBX-950, heart problems???

[copyman]

i called a hepatologist that was the first doc i saw after finding out i had HCV. i now see a differnt doc closer to home. although the doc i see now is involved with several trials he does not have the VX trial. So i called my old doc to ask if he would be having the VX trial and of course was not able to speak to him directly but talked to one of the fellows which told me they will have the VX trial there. He said he will put me on the list. he said there was some concern with the sx and i said about the rash? he said no there was more concern about heart problems! said they would know more after the boston meeting. has anyone heard of heart problems with vx-950? this was the first i had heard of it and was very susprised. thanks for any info on this.

[Myown]

wow, 9 more!! That will be over before you know it..Hang in there, its almost over!

[PSP-n-Me]

take my right foot and step on my left - you're a hoot!! hehehe

I am doing okay - I have 9 more weeks to go after Wednesday, and counting LOL

[Myown]

Awwh PSP thank you so much, but I am a PITA, really I am. I need to change. I'm over the top lately. Really am.. thank you though, but really for me, I need to SEE where I am wrong and not go into denial becasue if I don't see my faults, I'll remain a PITA. I'm not saying that I shouldn't have my views, opinions and I certainly will NEVER agree with someone just to agree, but I have been getting mad at things I shouldn't be getting mad at lately and for that, I am mad at myself. I should pull my hair or something and maybe take my right foot and step on my left foot. LOL.

Thanks PSP. Hope you are feeling well. How many more weeks do you have?

[PSP-n-Me]

you are most certainly not a PITA and I for one like your input in here

[jmjm530]

:)

[susan400]

Oops I meant, 'not necessarily'.  And of "there"  as opposed to "their".   My grammar leaves a lot to be desired!  Susan

[susan400]

Except, I was in Group C-which did not get Ribavirin and I was still having to get the EKG during the trial(1 time) and the (1 time) post trial...at that point, they already knew that I didn't have the Riba provided to me.    As I said above, I feel that it was just a precautionary measure, not necessary indicative of their being a known problem with the VX-950.

Susan

[Myown]

Waaah- Waaaah, you could have lied and said I'm not a PITA. LOL But thats okay, I know I am, my husband tells me too,,,,boo hoo, sniffle, sniffle.

[jmjm530]

MO: And you also have on record as all can see what a PITA I am.
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Agreement at last :)
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Susan,

My first doc wouldn't let me treat until I had a treadmill stress test as well as EKG's, ect. I asssumed it was mostly because of the ribavirin.

-- Jim

[Myown]

Just felt necessary to clarify my views when they are mischarcterized and taken out of context
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Wait a minute!! LOL ..I REALLY DON'T (caps for emphasis) think I mischaracterized your views nor did I feel I had taken anything out of context, but yes my tone el stinko - you were right about that. But anyhow you have it down on record how you stand and you also have on record as all can see what a PITA I am.

[Proactive]

Good. My mind is a few clubs short of a set these days, so I worry about not communicating with my 2 typing fingers what I'm actually thinking....if that makes sense (lol)

[susan400]

I know that prior to my being approved for the trial (VX-950), I had to pass 2 EKG's and then, after I started taking the VX-950 and then, again, post VX-950 I had to have another one, this was in the Prove 3 trial-at the trial site.  They never told me that the VX-950 could cause a heart problem, but I assumed that it was to make sure that a heart problem was not occuring.  Anytime that you take any type of experimental medication, there's always a risk of the unknowns.

Susan

[wyntre9]

Oh, THANK YOU for confirming my suspicion that I'm NOT entirely braindead.

As I was reading your post about teleprevir SX I was thinking, "haven't I read that somewhere else?"

As a matter of fact, i was rereading the peg pamphlet just last night!  *LOL*

wyn

[Myown]

Really don't understand the tone of your post, thought we had a civil relationship here.
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Yes we have had a civil relationship and I apologize for my tone. Sorry Jim.

[jmjm530]

Not at all. My comments were addressed to "MyOwn" and I wouldn't use the word "attack" in any event. Just felt necessary to clarify my views when they are mischarcterized and taken out of context. "Telaprevir" has always been one of our growing list of 'controversial' topics here. My guess that will change in the not too distanct future when it will become part of SOC. Sure hope so because the results so far are very encouraging.

-- Jim

[Proactive]

I think there may be even more positions than "both"   .............;^)Pro

[Proactive]

I certainly hope you didn't think I was attacking you, that definitely was not my intention...Just providing impetus so that "pro's and con's for both positions" can be heard and debated...That's was so great about these forums...and this thread is a great example...Pro

[jmjm530]

Probably should clarify my position re geno 2's while I'm explaining myself again for whatever reason.

Initially I took the position that geno 2's should treat even with little or no liver damage. That's because they have an 80% chance of SVR with half (24 weeks) the tx time of geno 1's.

As time went on, and Telaprevir started to emerge, I'm now of mixed opinions and I probably am starting to lean toward watch n' wait for this group as well, assuming they have little or no liver damage. Besides the emergence of Telaprevir, also factoring into my views is my personal treatment experience which was rougher than expected.

But again, it's an individual choice and people should research the treatment decision out for themselves in conjunction with their doctors. The pied pipers of treatment can do just as much harm as the naysayers. Hopefully I fall into neither camp.

-- Jim

[jmjm530]

Just to add to the above, while my opinion is as stated re geno 1's-- I've always made it clear that it's an individual choice with pro's and con's for both positions.

[jmjm530]

No. I'm not pro treatment or anti-treatment. Now or before. My personal opinion is that geno 1's with little or no liver damage should watch and wait. And that geno 1's with significant liver damage (like I was told I had) should treat agressively. My view on this has never changed since I began posting here almost two years ago and please show me where I've ever said differently -- as opposed to pulling words out of context as you did above. As to Telaprevir, I think it's the best hope right now for geno 1's who want to treat now. I base that on trial results that suggest double the response rate with half the exposure to interefron. Own stock?

No, but sometimes I wish I bought in about a year ago. Then again, I don't have a very good track record with the market, so probably best sitting on the sidelines. If I ever do take a position in the stock, I would post it for ethical reasons.

And I never said Copy was "wrong" in opening the thread but did express concerns and I'll let my own words stand for themselves.

Really don't understand the tone of your post, thought we had a civil relationship here.

Be well,

-- Jim

[Myown]

"Like Andriamo, I hope this thread does not scare people away from the drug based on what someone said to someone to someone."
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Sounds like you are now "pro tx",,wow thats a switch. What about when you talk about the "horrors of Soc" and tell people how you waited until the last moment to tx cause the drugs can cause all sorts of sx during and post tx and then you post the threads of other members and their complaints. I wonder where all these people that are so worried about how this thread might influence someone as far as tx - where are they when you do the above? I'm not mad at you Jim nor anyone one else - but I'm wondering if everyone bought stock at this point to tell you the truth.

The reaction to this thread is exactly the reason I never made a "thread" when this issue was first brought to my attention, but I DO NOT think that Copyman was wrong in opening the thread - all he wanted to do was to pass on what he "heard." AND I chimed in and so did PSP. People can do with that what they want. If heart issue is going to be addressed at the conference as told to Copyman, I would think there may be a reason,,,,why would they be discussing an "UNCOMMON sx" that they are ALREADY aware of unless the "un" is not as "un" as they thought. Like I said before, this may be the drug I need to use too, so I am hoping this drug proves to be as safe and effective as we would hope it to be for the sake of those in the trials and the people who will use the drug in the future.

But as I always say getting 'approved by the FDA" means 'goody-goody," for the drug company, but not always for the patient. Drug coated stents........

[Willy50]

They have to chronical all events which occur in the trials to the participants.  For instance if someone decided to commit suicide or lost the ability to see color these would not be proof that they were caused by the treatment.  The fact that any event is reported is a a far cry from a connection made to the trial.

As mentioned anemia itself from SOC could certainly contribute to a heart attack.  Lets also remember that those folks in the trials for far have been denied the use of "rescue drugs" which could reduce the anemia and thereby reduce the likelihood of a heart attack.

Jim....... that was an  honest (in italics) mistake; don't feel bad.  : )  IF one can cut the current treatment time by half we may remove the most insideous part of treatment; the back 24 weeks of a 48 week treatment.  This may be a period where most people suffer the worst and debilitating effects of the current SOC.  

Telaprevir may have it's dangers but it may also actually lessen the dangers of the current treatment.  How does one compute the dangers for the folks who must retreat over and over or those for folks who do 72 weeks of current SOC?

If you listen to the webcasts or read the articles it is still not out of the realm of possibility that some groups may be able to treat for a shorter time than the "12&12".  We may yet see another attempt at a shorter treatment arm in Phase 3 or after (and if) TVR is approved.

best,
Willy

[Proactive]

Interesting post, I have actually been waiting for a post like this (G) I find this subect very interesting for obvious reason, who knows, if I don't svr tx-ing with  my current protocol, well I've pretty much exhausted soc variants, short of doubling the peg and going longer than 72 weeks. I guess I just like to keep things in perspective and play devils advocate, that doesn't mean I'm not an optimist (G)..
What is interesting as well with your post is the fact that you were able to gather all this information, which has probably even been updated over the years of use...

* you can't say that with a study drug

[Andiamo1]

Right on as you usually are!