Hep C Discussion Forum

Huey · Guru

RE: Please help...

patiently_waiting · Senior Member

I don't expect anything will change with treatment for my remaining 2+ weeks. I already have the meds after all. What's at issue here is my ability to trust my doctor's decisions moving forward. I'm already unsure now of the past decision to take me off riba, and the upcoming decision about whether to extend treatment or not I want made with someone I trust and who doesn't dismiss anything and everything I say or ask (especially when I'm the one who's right!!) There's enough stress with treatment without worrying whether your doc knows what he's doing. Anyway, thanks for the support all. I really liked this other doctor I spoke with so I'm looking forward to picking things up with her starting Monday.

mallani · Guru

Hi PW,

Sorry to hear your problems. Cross your fingers, and hope you're Undet. at EOT and go on to SVR. I'm sure you will be fine. If you don't make it, I'd find another doctor for the next round of treatment. Cheers.

Fireman Rob · Senior Member

That's rough, PW. It sounds like you're on the right track if tx isn't a 100% effective this time. Hopefully you don't need too much more from the docs in the future. The odds of success are in your favor, friend.

To better medical experiences for us both...

Isiscat2011 · Guru

That is a whole lot of drama and stress. Not to mention a time consuming letter writing campaign. biggrin Funny how sometimes trying to control things that don't need controlled actually spins them out of control.

I'd keep my eye on the treatment ball but that's just me.

Tig · Admin

Hey PW,

I'm very glad you got in to see them and got your point across. Trust me, even if you accomplished little in the way of changing your course of treatment with that practice, you made your point loud and clear as far as they're concerned. I'm glad you were able to contact another physician and get the ball rolling, in short order I might add. I would follow up your appointment today with a letter describing your interpretation of the appointment. Then, following your appointment with the new physician, another letter, outlining your disappointment and their termination, if warranted. I'm sorry you're having to go through this, but it appears to me that you've got things under control and will soon have this course of treatment back in the direction you deserve to have it. Hang in there my friend, great days are right in front of you! Good luck...

Tig

patiently_waiting · Senior Member

Went in to see the doc today and they stuck to their guns. Try as I might to explain things I was interrupted every time I spoke. I don't think I ever even completed a sentence. I was also told I was being obsessive and I believe the word psychopath was used at one point (said in a joking way but probably how they feel about it). I think I've about had my fill. I just called another doc and she actually got on the phone with me and confirmed what I'm being told isn't correct. Even if this doesn't change anything in terms of continuing or extending treatment, I've lost confidence in my current doctor. I have an appointment with the new doc for Monday.

patiently_waiting · Senior Member

Tig56 wrote:
Thank you counselor! I don't care what it is, you call it a law, and I call it a joke. Please don't make it a petty argument about semantics.
Good luck PW, I hope you can get this straightened out without any further grief.
Tig

Thanks. I'll let y'all know how it goes Thursday. I'll try not to be too harsh - at least I'll have a couple days to cool off before going in. It would not have been good for me to talk to them yesterday. :)

Huey · Guru

Isiscat2011 wrote:
> "I would be so fired
That's funny. At least you can laugh about it. You should tell him this. lol

By the way,, speaking of fired,,, DHL has a pending discrimination charge against them. And i work across the street now at Amazon.. I guess they got the Bill, for the Sovaldi. Came back form operation and will not let me work. So I went else ware, I was just costing too much they had to get rid of me.

Isiscat2011 · Guru

Tig56 wrote:
Thank you counselor! I don't care what it is, you call it a law, and I call it a joke. Please don't make it a petty argument about semantics.

Wow, I didn't realize you were so upset. No need to lash out at me, Tig.

Tig · Admin

Thank you counselor! I don't care what it is, you call it a law, and I call it a joke. Please don't make it a petty argument about semantics.

Good luck PW, I hope you can get this straightened out without any further grief.

Tig

Isiscat2011 · Guru

Tig56 wrote:
If it's an OBAMACARE policy, you're probably right...

That explains your confusion over the Affordable Care Act. Obamacare (the ACA) is a law not an insurance policy. biggrin

Tig · Admin

Isiscat2011 wrote:
You don't need to change docs. Your tx is 2/3 of the way finished. You probably couldn't even get an appointment to see another specialist that fast, let alone find one who wants to step in now, and who knows if the next would be any better.

If it's an OBAMACARE policy, you're probably right...

Fireman Rob · Senior Member

PW,

Hopefully everything else is going well for you. Unfortunately my doc is only the rx writer in my case also. I had to convince him to do a 12 week EOT VL test because he was only going to schedule a 24 week EOT test and nothing else. This makes me want to send their office Gilead's brochure and highlight the 12 week SVR qualifier for "cured." Lol

I will be doing my first VL test at EOT. Hopefully 12 weeks is enough for both of us brother. My doc didn't even know S/O existed before me and I'm their first patient on the combo. It really makes me wonder what path I would be on without this forum. Thanks everyone!

Keep us posted PW as you and I are almost on the exact same timeline with our tx.

Isiscat2011 · Guru

> "I would be so fired

That's funny. At least you can laugh about it. You should tell him this. lol

Huey · Guru

Isiscat2011 wrote:
You don't need to change docs. Your tx is 2/3 of the way finished. You probably couldn't even get an appointment to see another specialist that fast, let alone find one who wants to step in now, and who knows if the next would be any better.
It is pretty bad out there but we already knew that. We make our decisions going in. There were some red flags about this doc from the beginning (used fibrosure to determine level of fibrosis, etc.) but it is what it is. He did manage to get you the off label tx. The truth is MOST people who are treating now will have docs that don't know enough about their treatments. This is why it is so important to make our choices carefully before starting--choices about docs, about tests, about treatments--we are the ones who have to deal with the consequences.

I agree, one element you left out is Strategy, You have to be aware of your situation with jobs, home ,other political in nature issues. Only oneself can factor in this to obtain the best outcome for them.

Isiscat2011 · Guru

You don't need to change docs. Your tx is 2/3 of the way finished. You probably couldn't even get an appointment to see another specialist that fast, let alone find one who wants to step in now, and who knows if the next would be any better.

It is pretty bad out there but we already knew that. We make our decisions going in. There were some red flags about this doc from the beginning (used fibrosure to determine level of fibrosis, etc.) but it is what it is. He did manage to get you the off label tx. The truth is MOST people who are treating now will have docs that don't know enough about their treatments. This is why it is so important to make our choices carefully before starting--choices about docs, about tests, about treatments--we are the ones who have to deal with the consequences.

Tig · Admin

Hey PW,

That's sadly incredible! There is no excuse for this lack of knowledge on their part. They shouldn't be treating anyone for this disease if they're so obviously ignorant of the tests that determine the effectiveness of treatment. I would seek another physician for further advice. Does your doctor have a partner? I don't know if that would be any better but he/she might provide a quick response, where a new practice would require additional response time. You may also get some assistance from your insurance carrier. They may be able to provide you with a rapid referral based on your treatment demands. I'm sorry you've had this hit you out of the blue like it has, but you've got time to get this on track. Go get em......

Tig

patiently_waiting · Senior Member

Well it's official. I just heard back from my doc's office and they do not know the difference between the two test results (Detected vs Not Detected). They think the results I got were the best you can get. I'm just sitting here stunned. My life is fully revolving around this treatment and these "professionals" can't take the time to know how to read test results? I would be so fired if I were this careless in my job. There have already been decisions made in my treatment based on this screwup. I have an appointment on Thursday and it's shaping up to be a very unpleasant one.

Isiscat2011 · Guru

patiently_waiting wrote:
I suppose one could base the decision on whether to extend or not just on the 12 week test, but it doesn't make much sense to me.

PW: You don't get to decide whether or not to extend tx. The insurance company does and there is no protocol for extending tx based on when you become UND. Unless you have extensive liver damage the insurance company is very unlikely to approve an extension especially for an off label tx. Have a fibroscan to determine your level of fibrosis. Without it you don't even know whether you need to extend tx.

patiently_waiting · Senior Member

I suppose one could base the decision on whether to extend or not just on the 12 week test, but it doesn't make much sense to me. I would think you'd want to know there's been at least some time between the point you became UND and treatment cessation. If you test at 12 weeks how do you know it wasn't week 11 before you became UND? I would just feel a lot better knowing that I had at least 4 weeks between UND and cessation of treatment. I would have preferred 8.

Isiscat2011 · Guru

P.S. Please try to remember that <15 DETECTED at 4 weeks is not a clinically significant of outcome. I would venture to guess that if tested this early as many people as not would not be UND at this stage. Many of them will, nonetheless, go on to attain SVR. Clearly, the tx is working at this point.

Isiscat2011 · Guru

patiently_waiting wrote:
Here's what I'm still concerned about though...

1) We will make a decision at the 12 week mark whether we need to extend treatment or not. We've already discussed that. How on earth are we going to make an informed decision if we have no idea at what point between 4 and 12 weeks I actually became undetected?

2) My doc made a decision to take me off the riba because of the rash (and maybe other results - not sure). Was this decision made thinking I was UND at 2 and 4 weeks??? My first note from my doc's office on from the 2 week test said I was UND (in their wording), but when I checked the actual results I wasn't.

1) There is no quantifiable evidence that when you become undetected makes a difference in outcome. Thus, knowing when you became UND would not tell you whether or not to extend tx. Generally, certain populations such as cirrhotics have a harder time achieving SVR, so extending tx would be more beneficial than harmful to them. Since you have never had a biopsy or fibroscan there is no way to definitively know your fibrosis status. Your insurance company would, therefore, be even less likely to approve an extension.

2) Only your doctor can answer the question of what he was thinking. You can discuss the option of going back on riba with him. If his decision to take you off was based on the mistaken belief that you were UND then he might reconsider. I assume his decision also had something to do with the rash, however.

This is not an exact science. Some docs add riba to this combo and others don't. The S/O combo is off label and very little data exists on it.

Tig · Admin

PW,

Looks like another example of an office that failed to read or interpret your lab results properly. Either explanation is inexcusable. I would certainly bring it to their attention immediately. I haven't seen a discontinuance guideline for Sov/Oly/Riba, but have found one on Oly/PInt/Riba that calls for discontinuance at week 4 if the viral load is 25 or above. I think the lack of a discontinuance guide for all protocols is irresponsible, especially when they are performing these expensive viral load tests. Like I've said before, the performance of these tests at this stage of treatment, without a guideline, serves one purpose, a morale boost (if there is one to be had). When it's performed at week 4 or 6 (too early in my opinion) and is still detectable, it serves no purpose whatsoever. What it does is flood the patient's mind with doubt and unnecessary stress. The likelihood of an undetectable VL is quite high at EOT with the Sovaldi backbone, but the proof (SVR) is in the result provided at EOT +12, not before. Until a discontinuance guideline is established for all protocols, the performance of this test before EOT serves little purpose. Unless, as in your case, the decision to extend treatment is based on an earlier than EOT viral load determination. Then a week 8 or 10 VL would be appropriate. I would insist on it at this point, while pointing out the misinformation you've been provided thus far. Hang in there and never give up...

Tig

patiently_waiting · Senior Member

Here's what I'm still concerned about though...

1) We will make a decision at the 12 week mark whether we need to extend treatment or not. We've already discussed that. How on earth are we going to make an informed decision if we have no idea at what point between 4 and 12 weeks I actually became undetected?

2) My doc made a decision to take me off the riba because of the rash (and maybe other results - not sure). Was this decision made thinking I was UND at 2 and 4 weeks??? My first note from my doc's office on from the 2 week test said I was UND (in their wording), but when I checked the actual results I wasn't.

longld · Senior Member

agree with ISIS - I do not understand why some people get tested so often - only good reason is if they are on a trial of some sort. I was tested at 12 weeks and 24 weeks - stay focused on EOT period - that is all that matters.....

Isiscat2011 · Guru

PW: The bad news is that either your doctor/nurse (whoever is giving you this information) is unfamiliar with how to read the results or is intentionally deceiving you. The reason they might intentionally deceive you is because they know that, in all likelihood, you will become UND. They are waiting till week 12 because the odds of UND increase with time. In other words, they want to give you hope, because they want you to comply with your tx plan. I wouldn't like being deceived either but they believe they are acting in your best interests. I don't know whose idea it was to test so frequently but it wasn't a particularly good idea.

The good news is you are not crazy. The other good news is that in all likelihood you will become UND during tx. Try hard not to focus on what the results read. It doesn't really matter whether you test again at 8 or 12 weeks because it won't change the course of your tx or your SVR odds. You are on the tx so keep going. There is simply no way to know the ultimate outcome until you reach that point. The odds are clearly in your favor that you will SVR with this cobo, particularly since you are a 1b, but there are no guarantees. Relax and try to be happy.

patiently_waiting · Senior Member

longld wrote:
there is a sticky on specifically reading these lab results;
http://hepcfriends.activeboard.com/t52892912/making-sense-of-viral-load-tests-and-results/

hope this helps, if not please come back!
cheers, lee

Thanks but I've already read all that stuff. The problem is from where I'm sitting it appears my doctor and his assistant need to read it. I would just like confirmation from others I'm not crazy.

longld · Senior Member

there is a sticky on specifically reading these lab results;

http://hepcfriends.activeboard.com/t52892912/making-sense-of-viral-load-tests-and-results/

hope this helps, if not please come back!

cheers, lee

patiently_waiting · Senior Member

I'm really agitated right now with my doctor's office and I'm hoping I can get some confirmation from knowledgeable people here that I'm not crazy. I've had two PCR tests thus far during my treatement: one at 2 weeks and one at 4 weeks. Both tests had this result:

HCV RNA IU/ML	<15 IU/mL	<15 DETECTED
HCV RNA, QUANTITATIVE REAL TIME PCR	<1.18 Log IU/mL	<1.18 DETECTED

This is a Quest Diagnostics test and I have even looked up the help link on the results they gave me. It clearly says if it says "DETECTED" you're still detected. I was supposed to have another one at 8 weeks. My doctor's office said there's no need to do another one till end of treatment "to make sure I'm still undetected". WTF??? Can they be this clueless?

EDIT: And I'm really confused by the points in time they've chosen to do the PCRs. 2, 4, and 12 weeks? It makes no sense to me. I'm starting to lose confidence that they know what they're doing. Then again I'm on medication and not feeling well so I would like some confirmation it's not me.

-- Edited by patiently_waiting on Monday 11th of August 2014 06:46:08 PM

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