Aa
Okay.
I saw the doctor yesterday. I go to Toronto Western, a teaching hospital here with a well-known Liver clinic and I'm assigned to one of their docs.
The doc told me that I'm a candidate in an upcoming Phase III PI drug trial that starts soon but didn't tell me the name, he didn't want to get into it, busy man..."just the facts, ma'am". So the trial co-ordinator is in on Monday - was supposed to be today but that's Toronto and I've no doubt that the snowstorm grounded her. Anyway. I have to get screened for the trial and if I qualify, it starts end of February. 7 arms, a PI, not Teleprevir or Boceprevir and that's all I know until at least Monday.
I thought I was going to get an exact number for my viral load. All I've known up til now is that it is 1.3mil+, the limit of the PCR used. So I asked him what my VL was and he said...you already know. And I asked him did he not test for this (11 vials of blood!) and he said...no...the government only allows for one VL test. He then said that after 1.3mil, it doesn't matter how high you are and that's as high as it goes. So I asked him... if the gov't only allows one VL test, why do they use one with a limit that low? And he said something like that was sufficient and that's as high as can be tested..and I asked him how others know their VL into the millions and we went round and round..until a tear started running down my cheek because I was getting frustrated and not at all understanding this. And I told him...how will I know if I've dropped the right amount if I have no idea what I'm starting at? And he just didn't see the signficance of it. He said that my VL has no impact on anything...not how well I'll respond to tx, not anything. But.. it has significance to ME. Again.. how will I know if I've dropped sufficiently if I don't know where I started? Suppose I'm at 6mil...and they decide at 12 weeks that I've only dropped to 6000 and it means I'm not responding? So they decide to take me off? Whereas..if I knew my VL was 6mil, it would mean I'm a slow responder (yes, Jim?). So.....I'm very frustrated that I won't know my exact VL. I may choose to go do an independent test. More on that later.
My liver enzymes are elevated. They've been normal until now..they're at 49 whereas they used to be normal. Perhaps...I don't know but perhaps...this explains the increasing intensity and frequency of the dull throbbing pain in my right abdomen? In any case...I've already decided to go ahead with tx and this is simply new information and the course remains the same.
I asked about how often they test for VL and the sensitivity of their test during tx. They test at 2, 4, 8 and 12 weeks to a sensitivity of <50IU/ml (did I point that symbol in the right direction?) However, at the 2, 4 and 8 week marks, the only info I'll get is a pass/fail. If I fail and my VL is above 50IU/ml, I won't have any idea by how much. Apparently this is a government thing, being universal health care here...that the gov't will only pay for an actual VL at 12 weeks. I have to say.. I am not happy about this. The NP kept telling me that their test is very sensitive so if I pass, it will be a very good thing. I just said to her...that's great if I pass..but if I fail, I'll have no idea by how little or how great an amount. And she finally just stopped trying to tell me it doesn't matter...because it DOES matter. Since then, I've called the independent lab that's most common around here to ask what it costs for an HCV PCR. She told me that I can't get one without a doctor's request but if I have one, I can walk in and get one done and pay out of pocket. The whopping cost? $14.**. If she's for real and that figure is correct, IF I get a fail at the 4 week and 8 week mark, I'll get my hep doc OR family doc to write me a request form and I'll go pay for it myself. It will be money well spent for me, a no-brainer. I cannot see me being patient to wait for 12 weeks for my VL figure if I fail all the way through. I can deal with reality very well but I am *lousy* at not having enough information and being left to wonder. That's like writing your tests in high school final year and only being told that you passed or failed...and not until your final exam do you get to know your actual mark.
He had told me to fax him my biopsy report and he would then be requesting my slides and they would look at my liver sample with their own diagnostic tools. So he tells me that he has never gotten my biopsy report. And I told him that I faxed it to him right away as he asked...and he said they never put it in my chart. Lucky I had it with me...(thanks Jim and everyone for constantly saying bring the copies of all your tests with you!) and I pulled it out and he made a notation. But...no diagnostic on the biopsy until I don't know when. That's more minor also as I'll do tx regardless.
I nearly had a meltdown when the poor women behind the counter called me over for some inexplicable reason to book my next appointment with the doctor for... NINE MONTHS LATER. I just started saying "oh no....I'm NOT waiting nine months!" And some poor guy there kept saying it'll be okay and I'm telling him there is NO way I'm waiting nine months to start tx. Gawd. So she gave up...and passed me over to the NP. The NP told me that that was their standard appointment procedure but that no...I won't be waiting nine months to proceed. Argh.
The NP told me that it will take approximately 4-5 months for the application to work it's way through for the government drug plan for the 20% of the drug cost my benefits don't cover. I told her that was beyond what I could cope with anymore and that I'll apply but that I'll be asking them to start tx with or without it because I'd rather pay for it than delay. I can't handle any more delays.
Got told they don't believe in extending treatment to 72 weeks for slow responders. Either 12 weeks or 48 weeks. Already posted about that on the other side. Not happy about that but will deal with that IF I have to.
I had some questions about tx but the doc didn't want to answer them as they will be moot if I'm in a drug trial. A bit frustrating but I see his point. It would just be taking up his time and I can hold on those...like Alinia...wanted to ask him about that and I did feebly mention the word but his response told me.. just drop it. It'll hold until it becomes relevant.
So...waiting til Monday or beyond..however long it takes .. to see if I'm in the drug trial. If not, then I'll stick with the plan and start tx after my project at work is done mid March and go with regular SOC and add Alinia to the mix if I can get it....but a step at a time...and god, I hope I learn patience out of all this. I'm not so good at being in limbo.
The doc told me that I'm a candidate in an upcoming Phase III PI drug trial that starts soon but didn't tell me the name, he didn't want to get into it, busy man..."just the facts, ma'am". So the trial co-ordinator is in on Monday - was supposed to be today but that's Toronto and I've no doubt that the snowstorm grounded her. Anyway. I have to get screened for the trial and if I qualify, it starts end of February. 7 arms, a PI, not Teleprevir or Boceprevir and that's all I know until at least Monday.
I thought I was going to get an exact number for my viral load. All I've known up til now is that it is 1.3mil+, the limit of the PCR used. So I asked him what my VL was and he said...you already know. And I asked him did he not test for this (11 vials of blood!) and he said...no...the government only allows for one VL test. He then said that after 1.3mil, it doesn't matter how high you are and that's as high as it goes. So I asked him... if the gov't only allows one VL test, why do they use one with a limit that low? And he said something like that was sufficient and that's as high as can be tested..and I asked him how others know their VL into the millions and we went round and round..until a tear started running down my cheek because I was getting frustrated and not at all understanding this. And I told him...how will I know if I've dropped the right amount if I have no idea what I'm starting at? And he just didn't see the signficance of it. He said that my VL has no impact on anything...not how well I'll respond to tx, not anything. But.. it has significance to ME. Again.. how will I know if I've dropped sufficiently if I don't know where I started? Suppose I'm at 6mil...and they decide at 12 weeks that I've only dropped to 6000 and it means I'm not responding? So they decide to take me off? Whereas..if I knew my VL was 6mil, it would mean I'm a slow responder (yes, Jim?). So.....I'm very frustrated that I won't know my exact VL. I may choose to go do an independent test. More on that later.
My liver enzymes are elevated. They've been normal until now..they're at 49 whereas they used to be normal. Perhaps...I don't know but perhaps...this explains the increasing intensity and frequency of the dull throbbing pain in my right abdomen? In any case...I've already decided to go ahead with tx and this is simply new information and the course remains the same.
I asked about how often they test for VL and the sensitivity of their test during tx. They test at 2, 4, 8 and 12 weeks to a sensitivity of <50IU/ml (did I point that symbol in the right direction?) However, at the 2, 4 and 8 week marks, the only info I'll get is a pass/fail. If I fail and my VL is above 50IU/ml, I won't have any idea by how much. Apparently this is a government thing, being universal health care here...that the gov't will only pay for an actual VL at 12 weeks. I have to say.. I am not happy about this. The NP kept telling me that their test is very sensitive so if I pass, it will be a very good thing. I just said to her...that's great if I pass..but if I fail, I'll have no idea by how little or how great an amount. And she finally just stopped trying to tell me it doesn't matter...because it DOES matter. Since then, I've called the independent lab that's most common around here to ask what it costs for an HCV PCR. She told me that I can't get one without a doctor's request but if I have one, I can walk in and get one done and pay out of pocket. The whopping cost? $14.**. If she's for real and that figure is correct, IF I get a fail at the 4 week and 8 week mark, I'll get my hep doc OR family doc to write me a request form and I'll go pay for it myself. It will be money well spent for me, a no-brainer. I cannot see me being patient to wait for 12 weeks for my VL figure if I fail all the way through. I can deal with reality very well but I am *lousy* at not having enough information and being left to wonder. That's like writing your tests in high school final year and only being told that you passed or failed...and not until your final exam do you get to know your actual mark.
He had told me to fax him my biopsy report and he would then be requesting my slides and they would look at my liver sample with their own diagnostic tools. So he tells me that he has never gotten my biopsy report. And I told him that I faxed it to him right away as he asked...and he said they never put it in my chart. Lucky I had it with me...(thanks Jim and everyone for constantly saying bring the copies of all your tests with you!) and I pulled it out and he made a notation. But...no diagnostic on the biopsy until I don't know when. That's more minor also as I'll do tx regardless.
I nearly had a meltdown when the poor women behind the counter called me over for some inexplicable reason to book my next appointment with the doctor for... NINE MONTHS LATER. I just started saying "oh no....I'm NOT waiting nine months!" And some poor guy there kept saying it'll be okay and I'm telling him there is NO way I'm waiting nine months to start tx. Gawd. So she gave up...and passed me over to the NP. The NP told me that that was their standard appointment procedure but that no...I won't be waiting nine months to proceed. Argh.
The NP told me that it will take approximately 4-5 months for the application to work it's way through for the government drug plan for the 20% of the drug cost my benefits don't cover. I told her that was beyond what I could cope with anymore and that I'll apply but that I'll be asking them to start tx with or without it because I'd rather pay for it than delay. I can't handle any more delays.
Got told they don't believe in extending treatment to 72 weeks for slow responders. Either 12 weeks or 48 weeks. Already posted about that on the other side. Not happy about that but will deal with that IF I have to.
I had some questions about tx but the doc didn't want to answer them as they will be moot if I'm in a drug trial. A bit frustrating but I see his point. It would just be taking up his time and I can hold on those...like Alinia...wanted to ask him about that and I did feebly mention the word but his response told me.. just drop it. It'll hold until it becomes relevant.
So...waiting til Monday or beyond..however long it takes .. to see if I'm in the drug trial. If not, then I'll stick with the plan and start tx after my project at work is done mid March and go with regular SOC and add Alinia to the mix if I can get it....but a step at a time...and god, I hope I learn patience out of all this. I'm not so good at being in limbo.
You patient patients amaze me :} I guess I also have the advantage of e-mailing my trial cood. nurse and she always get’s back to me immediately, she’s a sweetie.
Sounds like you have it all covered, 2 plans, etc. I get aggravated when they don’t see that we each, individually, need answers to our own situation. I got snippy once with my NP’s fill in, she than faxed me some 78 yr old ladies full chart (BIG HIPA oops!) and has been very pleasant ever since! Not sure if it was me getting snippy back or her big ‘oop’s’ that toned her down. (she was telling me how I ‘should’ feel, I asked her how well SHE handled these drugs when she was on them!)
.......I'm Stage 1 Grade 1..............GOOD!
Really curious which trial tho, so post when you know. Good luck next app.
LL
Sounds like you have it all covered, 2 plans, etc. I get aggravated when they don’t see that we each, individually, need answers to our own situation. I got snippy once with my NP’s fill in, she than faxed me some 78 yr old ladies full chart (BIG HIPA oops!) and has been very pleasant ever since! Not sure if it was me getting snippy back or her big ‘oop’s’ that toned her down. (she was telling me how I ‘should’ feel, I asked her how well SHE handled these drugs when she was on them!)
.......I'm Stage 1 Grade 1..............GOOD!
Really curious which trial tho, so post when you know. Good luck next app.
LL
Lauri ... by all accounts I'm being treated by good doctors. So that is a positive thing, that's why I switched. So now I have to work out the communication piece. We'll work on that. I'm thinking Dr. L. was expecting me to say "Yay! Drug trial!" and just put all my questions aside. But what I was really doing...was interviewing him to see if I have indeed made the right choice and if I'm going to get the kind of care I'm after. While I may not end up doing SOC, I wanted to know some things anyway, so I'd get a sense of the kind of philosophy they work under. Dr. L., I guess, was thinking it wasn't immediately pertinent and I lucked out I guess, being his second last patient at the end of a day where everything was two hours behind. No...I'm not happy with that...but I have had relationships develop over time with other healthcare professionals and hopefully this will settle out too.
Part of the problem was that I went in WITH expectations. Expected to finally know my exact VL, expected he'd have looked at my slides and given me his own interpretation, expected I'd actually get to ask all my questions...and wasn't expecting some of the answers I DID get. Should have seen me heading to my appointment...I was so...excited...that I RAN part of the way to the hospital to burn off some of the energy. I was finally going to get all that info!! So...I kind of built myself up for a fall in a way.
As for the biopsy, I do have my results, I'm Stage 1 Grade 1. Dr. L. had said that he would do his OWN examination of my slides as they have better diagnostics. Then I arrive and he says he never got the fax of my biopsy results..I sent it to him ages ago..so he said they didn't put it in my chart so nothing was done. Just another piece of information I was expecting to get that wasn't there. However, I had the copy with me, so he wrote down some info from that and that'll come....I hope!
I'm thinking that if I don't end up in the drug trial and do SOC tx, then Dr. L. and I will be having a chat about that. And I suspect I'll get the answers I need because it will all be pertinent then. Much as I'd like answers to a number of things now...I have to balance that with how much time he has to indulge me in some of that and respect HIS time too. So we shall see, eh? :)
Part of the problem was that I went in WITH expectations. Expected to finally know my exact VL, expected he'd have looked at my slides and given me his own interpretation, expected I'd actually get to ask all my questions...and wasn't expecting some of the answers I DID get. Should have seen me heading to my appointment...I was so...excited...that I RAN part of the way to the hospital to burn off some of the energy. I was finally going to get all that info!! So...I kind of built myself up for a fall in a way.
As for the biopsy, I do have my results, I'm Stage 1 Grade 1. Dr. L. had said that he would do his OWN examination of my slides as they have better diagnostics. Then I arrive and he says he never got the fax of my biopsy results..I sent it to him ages ago..so he said they didn't put it in my chart so nothing was done. Just another piece of information I was expecting to get that wasn't there. However, I had the copy with me, so he wrote down some info from that and that'll come....I hope!
I'm thinking that if I don't end up in the drug trial and do SOC tx, then Dr. L. and I will be having a chat about that. And I suspect I'll get the answers I need because it will all be pertinent then. Much as I'd like answers to a number of things now...I have to balance that with how much time he has to indulge me in some of that and respect HIS time too. So we shall see, eh? :)
Okay, I think I got it now :}
First of all, can you change Dr.'s up there?! I don't like him already! "Busy man', too bad! Your life here, your tx, your disease. That is just wrong to NOT answer your questions, whatever they may be. Do you have to stay with him? Will it be hard to change, like start all over/delay it more? (in Canada, don't know how it all works too well). And not even tell you WHAT 'possible' drug/trial. I don't understand that at all. Do they do trials and not tell a person WHAT drug? Why is he so d*m 'iffy' on so many things? He appears just mean! How would it 'bother' him to mention which it 'could' be? Any person would want to be researching whatever the drug is beforehand. And I am lost in why you aren't being told your bx results?
I would get your own VL test before tx, especially at that cost! I'm in a trial and got my own TMA testing at 4 weeks, also could not stand to wait till week 12! Hearing 'UND' helped so much as it was a 'going down' time in my tx.
...."mid March and go with regular SOC and add Alinia to the mix if I can get it"......
would that be a different Dr.?
Sorry all this stress for you. He could make it EASIER to answer some of your questions. I don't like him! Even on a lab day, if I want to talk to the Dr. they'll call him over, or call him!
Ask it all over again Monday? Have a list and say ' I NEED these answer's'? And demand the script for your own VL test.
Hang in there!
LL
First of all, can you change Dr.'s up there?! I don't like him already! "Busy man', too bad! Your life here, your tx, your disease. That is just wrong to NOT answer your questions, whatever they may be. Do you have to stay with him? Will it be hard to change, like start all over/delay it more? (in Canada, don't know how it all works too well). And not even tell you WHAT 'possible' drug/trial. I don't understand that at all. Do they do trials and not tell a person WHAT drug? Why is he so d*m 'iffy' on so many things? He appears just mean! How would it 'bother' him to mention which it 'could' be? Any person would want to be researching whatever the drug is beforehand. And I am lost in why you aren't being told your bx results?
I would get your own VL test before tx, especially at that cost! I'm in a trial and got my own TMA testing at 4 weeks, also could not stand to wait till week 12! Hearing 'UND' helped so much as it was a 'going down' time in my tx.
...."mid March and go with regular SOC and add Alinia to the mix if I can get it"......
would that be a different Dr.?
Sorry all this stress for you. He could make it EASIER to answer some of your questions. I don't like him! Even on a lab day, if I want to talk to the Dr. they'll call him over, or call him!
Ask it all over again Monday? Have a list and say ' I NEED these answer's'? And demand the script for your own VL test.
Hang in there!
LL
D*m Trish, ya' know I love ya and want to help...but wait till I re-read that a few times, lol. Your killing me on a foggy day here, lol.
I'LL BE BACK :}
LL
I'LL BE BACK :}
LL
Yes there are pros and cons to this debate. Fact is the rich will always get better care and that is just the way it is. I have seen in my life over and over that when taxes are raised here, only the middle to mid lower class suffers financially.
That's the Great Debate, isn't it. Last time I posted on what I was up against (getting denied funding for tx drugs because I was Stage 1, Grade 1 with normal enzyme levels), it kicked off a HUGE debate on universal health care. I have always thought we had a pretty terrific system..but then I've always been amazingly healthy. The most I've ever gotten is exhaustion until getting diagnosed with HCV. I guess it is true what they say.."walk a mile in the other man's shoes". It hasn't turned me off of universal health care. It IS, however, opening my eyes to the realities of it and that's a good thing, I think. There are pros and cons to everything. I don't know which is worse...to have everyone in the same boat and you all fight the system together...or to be at the mercy of whichever insurance company you happen to have. And if you have NONE...well, I can't even fathom what that would be like, having had health care provided my whole life.
Seems universal health coverage is not all it's cracked up to be. Those waiting for newer drugs may well wish they hadn't if it gets' mandated here in the states.
Thank you.. I have never looked at this in this kind of depth...in retrospect, should have. I'm making my way through and I see a couple of relevant trials. The IMPROVE trial is interesting...brutal but interesting. SOC for 48 weeks or 72 weeks. One or the other. I would at least be guaranteed full SOC and 72 weeks is just extra insurance. I'm going to look into this one...and will keep cruising through the others. Interesting to note what sorts of things they are doing trials on.
Thank you.. much appreciated.
Thank you.. much appreciated.
To see the various trials and their current status go to
clinicaltrials.gov. In the search criteria key in 'hepatitis, toronto' without the quotes. You see a bunch of returns.
clinicaltrials.gov. In the search criteria key in 'hepatitis, toronto' without the quotes. You see a bunch of returns.
Thank you for that. I asked him if the trial was teleprevir or boceprevir and he said no. So that would rule out #1. I will have to wait and see.
Here are a couple upcoming 7-arm trials that will also be inT'ronto. But, both appear top be phase 2, not 3.
http://www.clinicaltrials.gov/ct2/show/NCT00423670?term=hepatitis%2C+miami&rank=51&show_locs=Y#locn
http://www.clinicaltrials.gov/ct2/show/NCT00517439?term=hepatitis%2C+miami&rank=56&show_locs=Y#locn
http://www.clinicaltrials.gov/ct2/show/NCT00423670?term=hepatitis%2C+miami&rank=51&show_locs=Y#locn
http://www.clinicaltrials.gov/ct2/show/NCT00517439?term=hepatitis%2C+miami&rank=56&show_locs=Y#locn
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