Allen's Sovaldi + Ribavirin Treatment Log

@ Hep C victim,

We have had a very different experience once out of the community hospital/neighborhood gi venues.

At our tp hospital the care was world class.

Though addled by HE and every other ESLD symptom he was treated with respect.

Though on Medicaid, no treatment was denied. We had to juggle sometimes to keep the state happy. But they helped every step of the way. Mike was transpanted 3 years ago with Alcoholic liver disease, Hep C, and Heptocellular carcinoma. His Hep C came back and he is urrently being treated with Sovaldi and Oysio.

He was undetected at 4 weeks.

His AST ALT was 15/15 last week. He believes in his heart they have cured him.

I hope you find more peace in coming months.

You are entitled to feel however you feel...but as a moderator here, I beg you to keep your rage family friendly. I don't like to edit the posts, but may have to.

I hope some day you are better.

MamaLama

Hepc, your posting is not what I have always thought of the medical profession. I am learning and am in serious counseling due my inability to "please" my Dr. Trying to do everything exactly as told and praying for the best outcome. Thanks for sharing.

Allen, know you must be feeling better with the meds out of your system!
music 👱

Okay everybody I need help understanding something, I was just called by the nurse who has been assisting me through all of this and I am not sure if this is good news or bad news so please if you have any real knowledge as what this all means let me know.

I was told my viral load is "LESS THAN 12" and that the test can only detect down to 12, whatever that means and both the nurse and my specialist say because Sovaldi is so new and this test is so new they are not 100% sure how to interpret these results and of course it leaves me feeling kind of odd to say the least.

I have another VL test scheduled for July 31 2014 which is 12 weeks after this last one I just had and I HOPE that again it will say I am "LESS THAN 12" whatever that means, to me that will mean the virus isn't replicating I would think?

MamaLama in your signature you mention Mike is "Week 4 Viral Load = <15 Undetected" so I have to ask, does 15 or less mean a person is undetected? Also if this is what it means is their a document or *anything* that mentions this you can refer me to or if a reputable specialist has told you 15 or less means undetectable could you possibly private message the specialist's contact if so my specialist can contact them to confirm these results.

I'm not joking, my specialist is not quite sure how to interpret these results as I am the FIRST in my city to finish the Sovaldi + Ribavirin treatment and also one of the very first in Canada so I guess not all specialist are sure what these numbers mean and trying to explain this to my wife she is kinda thinking these specialists are incompetent but personally I think they are just not sure.

In other new's, I am walking at least 12KM per day with my dog, 9KM in the morning and another 3KM around dinner and I also do a 30 minute cardio workout, no more afternoon naps and no more running out of breath walking up stairs!! This all started happening last week and I am feeling so much better both mentally and physically!

Indeed I am feeling better music, this week I feel great and my appetite is better and no more sick feelings and always being tired isn't happening anymore! I feel alive!

Thanks again everybody for your support!

Allen, it seems you're missing one word at the end of that result. "Detected" or "Undetected".
Look at my signature (I had one of each).
It is possible that they are implying that you are less than 12 but detected (I don't believe we want that at all), but we really have no idea without this last detail. I would get on the horn and find out.
Let us know what you find out as soon as you can. Maybe even ask for a retest. My Dr told me that a lot of times you can't reproduce that result and it can very possibly be inaccurate (if it is Detected). But here's to praying you have the Undetected version!
What a lame thing to be told after all the waiting you've already done! That's pretty anticlimactic, even for me, so I can imagine what you are thinking.

I called last night and asked the nurse to clarify if the words "Detected" or "Undetected" appears anywhere after the <12 that was mentioned to me and if not then I asked that she call the testing center and ask for clarification.

I'm shocked also that they *seem* to not know, then again my Hepatitis C specialist at the beginning of all this told me that I would not be able to get Sovaldi for "3 to 4 years" because their was no DIN# yet my wife when we returned home looked up the DIN# and had it within an hour and a month or so later we negotiated to get Sovaldi all *without* my specialist.

I hope to know more soon but in the meantime I'm not gonna stress about it because in the worst case scenario I would do the treatment again until I rid my body of this. I have a strong feelings its undetected and the specialist is simply *confused* or doesn't wish to spend time looking into this and instead its easier for her to make me wait 12 weeks for my next VL test and then if nothing changes then she will thing its all OK.

Personally I would never recommend my specialist to anybody simply due to her lack of communication through all of this, she instead assigned me to a nurse at the Hepatitis support centre which I have to admit seems like more of an expert than the specialist and most of all she isn't LAZY when it comes to providing me with info and returning my calls in a timely fashion.

Allen,
Did you ask for a copy? Everyone should have copies of their medical records. I would call again and tell this *specialist* you want a copy faxed or mailed to you. Then I would send a request, in writing to their office. You need this information.

Last night themister and I went through his two treatment's paperwork for you. He had weekly CBC w/diff, BUN, Creatinine, ALT, TSH blood testing both times. This was to insure his blood did not crash into a dangerous level during treatment. Which it did the 1st treatment! During his 2 treatment's we had tests from 3 different labs. The blood is tested at a lab. His were Quest, Roche, and ARUP.

Your blood test hard copy will have TEST INFORMATION description on the hard copy. That would explain the reference range. I don't want to presume what a nurse said over the phone as less than 12. You should have the hard copy, Allen.

Science is not my thing, but we have a 3 ring binder full of labs from 10 years disease history. themister had 6 viral load's since 2nd treatment, 3 with his 1st treatment. From at least 3 different labs. They all look different,(and the older tests only went to <50 or <100) in 2005-05, but it is pretty easy to figure out from the paperwork. I do not know what labs Canada has, nor how your tests look. I know there was a push for an international standard on VL testing some time back.

One of themister's viral loads was his relapse. His VL test at end of treatment was <50 ...as low as the test he had went at that time. 12 weeks later, his VL was Out of Range 77,800 H.

Also, some tests do not say detected or undetected. Some say *neg*, or give ref range and you can see you are in range.

Hope this helps. Thinking about this just now....in writing, request ALL of your medical records from your doctor. Big Hugs

Hello again, I have spoken with the nurse again and the wording is

<12 DETECTED

I'm sorta emotional because I have anxiety as it is and its been stressful since last year, I feel good and positive but after 1 month my level was down from 4.7 million to just 79 and now I am told its <12 DETECTED so really what the hell am I supposed to think?

The specialist told the nurse "it's detected but very low, all we can do because of this new assay is wait till Allen come's on July 31st for his next blood test and then we will know for sure"

The nurse has told me in her experience with 1000's of patients if the virus is still in my system we WILL see it return in the next 12 weeks without a doubt, the numbers will be higher than "less than 12" and worse case scenario, I will have to do another treatment....which I hope is not the case.

The reason why the confusion, I guess before they could detect down to <100 and then it was <50 and then <35 and now we have <12 so they say this is a VERY sensitive test and it may be detecting remnants and that WHY I must repeat my VL in 12 weeks. The tell me their is no sense in repeating the VL test again right now as we will more than likely get the same result but 12 weeks will be a large enough window that if its there it will show its ugly face.

Apparently my specialist is the best we have in my city though I don't always feel the same about her, I really have no choice but to stick it out and control my emotions for another 12 weeks or so until my next VL test and when I get this results which should be in the first week on August, I have an appointment with the specialist August 13th 2014 and hopefully it come back undetected this time.

Last but not least, I don't want others considering this treatment to think this is a failure because it isn't, I went from a viral load of 4.7 million down to <12 and my ALT went from about 680 down to 19 so obviously something worked and these results for all we know could mean that I am actually cured.

Just as MikeLama has his level change from <15 Detected to <15 Undetected in a week's time the same could also have happened to my blood since May 1st and it may actually be undetected but unfortunately I have to wait 12 weeks for positive confirmation.

Stay positive everybody, I'm not gonna let these results control my life or ruin my summer or my vacation I have planned next month...I'll beat this sooner than later

=================================================================

Sovaldi + Ribavirin Treatment began February 6th 2014 - 12 weeks of treatment. After 4 weeks treatment VL has dropped from 4.7 Million to *79* - I've finished treatment April 30th 2014 .

VL level as of May 1 2014 is "<12 DETECTED" - Next VL test July 31 2014 and my results may change to undetected.

Post Edited (AllenM) : 5/15/2014 11:41:33 AM (GMT-6)

I'm aware I'm not the first in Canada, I'm not in Calgary but close and the clinic tells me I was the first in my city with about 15 others 2 weeks behind me.

I guess I'm just sorta bummed that my specialist seems confused how to interpret the results, or they didn't relay the info properly. Yesterday I was told it was simply "Less than 12" and nothing about "Detected" so I guess now that I hear that it sorta bothers me.

I'm not looking for a ticker tape parade, simply hoping I get a more definitive answer and did not realize the testing only went down to <12 and even though it is <12 they are now saying "it's still detected but very low" and THAT is what is confusing..how can they say it's still detected if its <12 and the test only goes to 12?

The nurse mentioned in the past when it was <35 it was *agreed* by the doctor that is your were <35 for 24 weeks then you were "cured" but now thats changed....again.

I guess I was hoping for a more positive confirmation but obviously the only sure way it to keep having regular testing to see if its detected.


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Sovaldi + Ribavirin Treatment began February 6th 2014 - 12 weeks of treatment. After 4 weeks treatment VL has dropped from 4.7 Million to *79* - I've finished treatment April 30th 2014 .

VL level as of May 1 2014 is "<12 DETECTED" - Next VL test July 31 2014 and my results may change to undetected.

This result does suck and there's no way around it. There is the hope, like my Dr told when when I had <15 Detected, that it is wrong. He specifically told me that that many times that result can't be recreated and there is a definite chance it's wrong. I actually found someone in another forum at that point when I searched around and found they said that was exactly what happened to them when they retested.
It's not worth it to THEM to retest because it's not a big deal for them to wait, but for our piece of mind, it absolutely is. And as usual, our piece of mind doesn't factor into anything, as we usually experience at some point in the process.
As to your question, the way it can be detected if it's less than 12 is that the tests can still detect it usually a few points below that number, but it can't put a specific number on it. Hence <12 Detected.
I love your attitude and am praying for the best. But even if the worst should be the case, I know you are well aware that this is the best time in history to have this problem.
Will be waiting along with you.

The problem is I'm in Canada and its VERY different than the U.S and I don't know anywhere I can just go schedule another VL test, the way they do things here the government pays for everything and they don't allow us to jump the queue so to day by paying.

I'd be more than willing to pay it however in Canada as far as I am aware I cannot order another VL test, the specialist has to and she is saying 12 weeks :-(

steve-ca said...
This result does suck and there's no way around it. There is the hope, like my Dr told when when I had <15 Detected, that it is wrong. He specifically told me that that many times that result can't be recreated and there is a definite chance it's wrong. I actually found someone in another forum at that point when I searched around and found they said that was exactly what happened to them when they retested.
It's not worth it to THEM to retest because it's not a big deal for them to wait, but for our piece of mind, it absolutely is. And as usual, our piece of mind doesn't factor into anything, as we usually experience at some point in the process.
As to your question, the way it can be detected if it's less than 12 is that the tests can still detect it usually a few points below that number, but it can't put a specific number on it. Hence <12 Detected.
I love your attitude and am praying for the best. But even if the worst should be the case, I know you are well aware that this is the best time in history to have this problem.
Will be waiting along with you.

Thank's for the info Steve, appreciate your comments.

Get your records, and do what you must to have them released. Going forward it will be valuable. Not sure how involved you plan to get with learning and education on your disease, but I promise you...if you have liver disease, you become wise in things you never wanted to know. We were very ignorant of Hep C and liver disease when themister treated. We crash coursed over the years regarding new drug trials, labs, various "what can go wrong and what to do about it". And with liver disease, much can and often does go wrong. With or without positive thinking ;) Without educating ourselves, he would likely be dead now...x3....seriously. Things that do not matter to normal folks can be life threatening for liver folks. And meds normal folks can take will really trash a bad liver.

On your fibroscan. I don't know how those results read. I think Mama Lama's Mike had fibroscan's.

Here is how my husband's biopsy tissue report reads. The diagnosis part:

DIAGONOSIS: NEEDLE CORE BIOPSIES, LIVER
Interface Hepatitis, Clinically chronic Hep C, Mildly Active (Grade 2 of 4) with Cirrhosis (Grade 4 of 4).

Because he themister has Cirrhosis...he can obtain SVR for Hep C, (and did) but he can not cure cirrhosis without a transplant. That is if he lives long enough to have his liver crap out before something else ;) For him....the liver crapped out 6 months after SVR. Stinks. Sorry about the test result, Allen. Chin up! Big Hugs