Third Times a Charm with Harvoni....I hope.

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Dog LeDon
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Date Joined Apr 2014
Total Posts : 191
   Posted 2/13/2016 1:27 PM (GMT -7)   
I talked to the GI, he wants an ultrasound. I'll do this once a year, for several years, looking for signs of liver cancer (HCC).

My liver enzymes, platelets, monocytes have all normalized. Just the bilirubin was up at 1.7, and those numbers are from last October, 2015. I will do another blood test in April with my GP.

I have been SVR for over six months now. It's my understanding that a year is the absolute golden rule to safely say that I am cured. If there is any little trace of the disease it should show it's ugly face by then. After one year, it's believed that reinfection - risky behaviors - explains HCV reoccurrence. And clearing the virus cuts chances of HCC in half after one year, and even more after that. It's like quitting smoking, the risk will always be there, but I am most likely to meet my demise from something else.

What I got to work on now is dropping 15-20 lbs. of fat off of my waistline. I just fought off urges to crack open a new bag of barbeque kettle style chips. I kind of feel like a medal is in order. It was tough. Lol

I know there's a lot of sick folks out there. I feel sad for you.

Last December, I remember my diagnosis of cirrhosis vividly. I was by myself, in a hotel room, and felt like I was done. It took over a week to come to come to grips. This was/is a huge mental battle. Coming to grips with addiction is a start. I have been alcohol and MJ free for 15 months. Free of HCV for six months.

I still experience a bit of sadness. My brain probably has quite a bit of healing ahead. (Did you see what I did with that?)

Take care, all.
Dog

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 2/13/2016 4:57 PM (GMT -7)   
Dog, you are always a delight ;) Barbeque chips are my weakness too.

Themister has scans of some sort for HCC every 6 months. As well, he has an AFP Tumor Marker test. Here is a link to that test.

/labtestsonline.org/understanding/analytes/afp-tumor/tab/test/

You have a brilliant attitude and always make us smile. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 2/14/2016 9:51 AM (GMT -7)   
Thanks, miz!
I talked to my GI about a blood test.
He said insurance would not pay for it since I'm SVR.
I mentioned MRI, which is better than ultrasound, and they won't pay for that either.
I think that's a load of horse s### since my wife and I work hard and pay handsomely for insurance, but the Anthem BC don't care what we think.
B##t##d#.
Thanks again and have a great day!
dog
Oct 15, 12 wks Post Treatment, HCV Undetected, all enzymes normal except bilirubin 1.7
Past Treatments: Geno 1a, Compensated Cirrhosis
Jul 15, End treatment Harvoni 24 weeks
Dec 14, Alt/Ast 365/207, Bili 1.1 (normal)
May14: Post treatment PegInterferon, Ribavirin, Sovaldi (12 wks) Undetected / Relapse / Fail
Feb 14, Alt/Ast 628/395, Bili .8 (normal)
2000: Interferon, Riba (48 weeks)

woofer5
Regular Member


Date Joined Jul 2015
Total Posts : 87
   Posted 2/14/2016 12:20 PM (GMT -7)   
Hey Dog,
You're exactly right...it's a load of Horse S###...but we're talking insurance companies. If they can find a reason (or "unreason"...is that a word?...it should be) not to pay, well then surprise...they'll try to avoid paying.
Push 'em....as long as your labs are properly coded by your doc, they'll pay.

My EOT (24 weeks Incivek triple therapy) was March 2014.
I had my annual HCV RT-PCR, CBC, CMP AND LFT's in 2015 and they were paid for by United HC, no problem (I'm covered under my wife's policy). As a matter of fact, I should be getting my annual "undetected" in a couple of weeks. I'm in decent shape for a 67 yo fart, but my hepatologist wants an annual "undetected" x 5 years.
For me, it's a win-win. Our insurance pays the roughly $450 lab cost as well they should. My wife works hard and we pay plenty for the annual premium.
I work hard too, that honey-do-list is a B#T#H...lol.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1116
   Posted 2/14/2016 4:54 PM (GMT -7)   
hey dog,
the ultrasound is reliable to detect size and echogenecity. if done with the same lab, it will come with a comparison.

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 2/14/2016 8:18 PM (GMT -7)   
Hey, thanks ppm, woofer.
That helps a lot. And I am doing the ultrasound at the same place as last time.
My GI is pretty much a hands-off type guy.
My plan is to do labs every six months and ultrasound once a year.
My GP does a physical around June and I see the GI around January.
We'll see how that works out.
I appreciate the kind words of concern.
Good night all.

woofer5
Regular Member


Date Joined Jul 2015
Total Posts : 87
   Posted 2/15/2016 7:23 AM (GMT -7)   
Mornin' Dog,
I know that you're an experienced and knowledgable guy, but if you haven't seen it, this website is excellent.
Best of luck.

radiopaedia.org/articles/cirrhosis

__________________________________________

2013 / Diagnosed and successfully treated for hep c geno 1b with Telaprevir, Interferon and Ribavirin...treatment duration 24 weeks.
Retired CRNA (aka nurse anesthetist)...approx 35 years experience in the ER and anesthesia.
Exposure was likely a bloody needle stick from a known hep b patient in 1977. Hep B never progressed to the chronic phase...my own, healthy immune system crushed it.

tblount
Regular Member


Date Joined Oct 2015
Total Posts : 82
   Posted 2/18/2016 6:21 PM (GMT -7)   
If your income is under $10,000 a year you can find a federally funded clinic and a $25 dr visit can order blood test through Lab Corp for a very reasonable rate.
M 64, detected after taking a 10 panel STD blood test
Started 12 week treatment with Solvaldi and Ribavirin 9-28-15
Genotype 2b -- Load Count 17,000,000
NOT DETECTED 12-22-15
Thank You Gilead

stu58
New Member


Date Joined Feb 2016
Total Posts : 19
   Posted 2/21/2016 6:47 PM (GMT -7)   
Way to go Doug !
I'm glad to hear of your sobriety and your SVR progress.
I have had this disease for 2 decades now and I've seen the agony people go through. Sufreeing and failing the old regimen was no fun for so many.
Now there is great progress and it's like it's a dream.
Hang in there Doug :)

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 3/5/2016 11:04 AM (GMT -7)   
How scary! I'm so glad you are ok. We never know how fast something can happen, do we? Please rest up and let yourself emotionally and physically heal. You are one lucky fellow to have survived so much. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4806
   Posted 3/8/2016 7:42 PM (GMT -7)   
good grief...are you feeling a bit better? what a nightmare!

hugs, ml
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 3/11/2016 8:43 AM (GMT -7)   
Thank you, ladies. I'm getting a grip on myself.

My pain pills are 325 mg of acetaminophen, 5 mg of codeine or oxycodeine, something like that (the pill bottle is upstairs)
We know acetaminophen is bad for the liver. I read that 4 grams is the limit in 24 hours, and that's for a healthy liver.
I'm sure everyone has heard how Tylenol (acetaminophen) has ruined peoples livers.

So I found instructions for separating the acetaminophen from the pain killer and process my pills before taking them. You got to watch out for your health. Stay informed! Don't trust the doctors.

I'm only taking them in the evening. I stretch my ankle tendons during the day and I don't want the sensation muddled by pain killers. And I don't think I could, but I don't want to become hooked on a pain killers buzz. It's not pleasant anyway. Like out of control and clumsy. Like being drunk.

I told the EMTs on the way to the hospital; the ER hospital medical staff; and the ortho doctor I am seeing for follow up treatment that I am recovering from liver disease. And they give me a sh##load of pain pills (100) with enough acetaminophen that can destroy a good liver.
Sheesh. eyes

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1116
   Posted 3/11/2016 4:03 PM (GMT -7)   
hey dog...
sorry for your situation. acetaminophen is ok. you can take 12 pills a day, and stay under 4 grams daily..

i am recovering from major surgery, performed 9 days ago. so i am taking norco round the clock. dr checked my alt yesterday and is perfect. i had 4 vertebra removed from my neck, and am dealing with fusion, with screws and rods..big bummer!!!

wish you my best for a speedy recovery, and function restored
your friend barry

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 3/11/2016 10:01 PM (GMT -7)   
Oh my, Dog! That is awful. Sure hope you heal quickly and everything works to your favor legally. You are a miracle. All the things you have been through yet still you're giving it all you've got. Hang in there. We're rooting for you.
F, 57, diagnosed 9/15, undetermined source,
12 Week Treatment with Sovaldi and Ribavirin start date 12/12/15.
Week 4 blood tests :
-HCV Not Detected
-Liver function in Normal range
***EOT on March 4, 2016***

woofer5
Regular Member


Date Joined Jul 2015
Total Posts : 87
   Posted 3/12/2016 2:29 PM (GMT -7)   
Holy crap Dog...I mean Jeepers Creepers!
On the one hand...talk about bad luck...on the other hand you're lucky to be alive.
Sounds like the nasty bumps and bruises will come around in time. I hope the ankle heals up ok...did the orthopedist give you any feedback? As I'm sure you know a fracture that looks really nasty (rotated, swollen...really deformed) can heal up just fine. Usually orthopedists will be pretty honest about what the prognosis is.

How about the old bean? The ringing stop? You getting back to normal...we both know what that means...right?...hahaha.

I've had some close calls and one accident where I got hurt...bad lumbar disc for about 45 years now, but no surgery and really not a big deal. How many 67 yo geezers are there with bad backs?...just about all of us.

Back about 10 years ago, I was driving south on the Maine Tpke...had dropped my daughter off in Halifax, NS. Anyway, this old guy enters the southbound traffic from an exit ramp. When I shot by him (he was way over on the right) I saw his face. He had a crazed look and was laughing (kind of a maniacal laugh). I dailed *77 and reported him to the state police.
I tried to follow up, but could never find out anything from the staties or local news outlets.
I'm certain he was looking to kill himself...I can still see his face...chilling to think about.

The Tylenol (usually 325 mg/pill, but sometimes 500 mg/pill...depending) should be ok, but I don't know why they just don't prescribe it without Tylenol for someone with your history. There are plenty of oral narcotics available without adding tylenol, etc.
My wife (no liver problems) was on oxycodone/tylenol (percocet, roxicet, endocet, tylox and a bunch more names) for her ankle reconstruction. Anyway, she had awful dreams and hallucinations.
We got her switched to dilaudid. Great drug...wonderful analgesic...just hydromorphone plain and simple. She only took it for 2-3 days, but it worked great.

I sure hope you're doing ok...crutches are a bear aren't they?

tblount
Regular Member


Date Joined Oct 2015
Total Posts : 82
   Posted 4/20/2016 7:21 PM (GMT -7)   
Dog said
"One more thing.
My blood pressure is back to normal, 120/80. Sometimes lower, 114/74.
For the past several years, it was never lower than 135/90.
Once it was 170something and I admitted myself to the ER and it eventually lowered after a couple of hours.
Just wondering if it was anxiety? Or the compensated "

I had the same thing happen about 2 weeks after treatment. My jaw started quivering and I read it was from an artery swelling and pressing against a nerve. Long story short, I went to the ER and they said I wasn't having a heart attack and gave me a vascular dilatator. I have taken a low dosage of bp meds for 20 years and I took about 3 times normal trying to bring it down from 180. The doctor was familiar with sides of Ribavirin and knew that it could cause a heart valve to fail to relax and in a fluttering state it causes the systolic to elevate.

I can verify that anxiety was a major factor. I was making plans to die before I went to the er but after feeling I was in good hands it went down.
M 64, detected after taking a 10 panel STD blood test
Started 12 week treatment with Solvaldi and Ribavirin 9-28-15
Genotype 2b -- Load Count 17,000,000
NOT DETECTED 12-22-15
Thank You Gilead

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 5/13/2016 3:18 PM (GMT -7)   
Hey everybody.
I just noticed that I haven't posted anything in a couple of months.
As you may know, I suffered a head-on collision and dislocated ankle and other injuries.
I'm back to work now. I can almost walk normal, but still have stiffness in my ankle and wrists and probably will the rest of my life.
One more thing. Lol Those posts from early to late March, I was high as hell on oxycodone. Lol I had to quit those things cold turkey. I went to court and the 34-year-old guy who hit me was fooling around with his phone. That's all. The dumbass.
All the judge did was restrict his license, fine him $100 and force him in a driving school. So lenient.
Other than that, I'm doing alright.
I have an appointment with a very respected hepatologist, Dr. Mitchell Shiffman, at the Virginia School of Medicine next week.
I want second opinions on my condition and get his answers to a few questions.
My blood pressure is pretty steady at 120/78.
My most recent labs from February showed my bilirubin at 1.4 (0-1.0 MG/DL), platelets 143 (175-388 K/mcL).
The bilirubin seems to have improved from 1.7 last October. I don't know what's up with the platelets. But they both might no mean anything since the blood was tested in a different lab.
Take care, all.
dog
Mar 1, 2016 Ultrasound Clear, noticed Gallstones, no symptoms no problem
Feb 25,2016, HCV Undetected!
Oct 15, 2015 12 wks Post Trtment, HCV Undtcted, all enzymes normal, but bilirubin 1.7
Jul 15, 2015 End treatment Harvoni 24 weeks
Dec 14, 2014 Alt/Ast 365/207, Bili 1.1 (normal)
May14: 2014 Interferon, Ribavirin, Sovaldi, Undetected / Relapse
HCV Geno 1a, Compensated Cirrhosis

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 5/22/2016 12:54 PM (GMT -7)   
My bilirubin is 1.4 mg/dL.
The hepatologist said I have Gilberts Syndrome. Only the bilirubin is a little elevated, not the total bilirubin. Anyway, he said it's nothing to worry about.
My platelets are still low 143,000. So, that's not so low I should worry too much.
Hopefully, it will normalize as my other enzymes have.
He wants me to get an ultrasound every six months and a fibroscan once a year.
I was recommended to go see a hepatologist by momma, I believe.
It was good advice as I feel much better with the additional tests and the more precise information he has given so far.
I hope everyone is doing well.
Good luck.
Mar 1, 2016 Ultrasound Clear, bilirubin 1.4mg/dL, platelets 143k
Feb 25,2016, HCV Undetected
Oct 15, 2015 12 wks Post Trtment, HCV Undtcted, all enzymes normal, but bilirubin 1.7, low platelets
Jul 15, 2015 End treatment Harvoni 24 weeks
Dec 14, 2014 Alt/Ast 365/207, Bili 1.1 (normal)
May14: 2014 Interferon, Ribavirin, Sovaldi, Undetected / Relapse
HCV Geno 1a, Compensated Cirrhosis

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4806
   Posted 5/22/2016 3:30 PM (GMT -7)   
Thx for the update dog...sounds like things are going well. I wish they would do a fibroscan for Mike. He was 3 years post tp before he got the treatment for Hep C...and I'd like to know where his liver is now. But they say his let's tell a good story and until or unless they get wonky. They will leave it alone. He does get the MRI.

Hugs, ML
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 7/14/2016 8:09 PM (GMT -7)   
Hi everyone. I hope you are well.
I visited my hepatologist today. It is so nice to deal with an expert in his field, the hepatologist vs. the general gastroenterologist.
I mentioned before that he works at Virginia Commonwealth University School of Medicine, but it's worth mentioning again. The last time I saw one was in Birmingham, Alabama. They are worth the drive to find one.
Anyway, I had a Fibroscan done. It's an instrument with probes much like an ultrasound, except they have stubby little transmitters on the end of the probe. It only took about five minutes. It was like a SONAR. It made a similar noise into my guts.
The readings came back as FO1. He thinks I have a bit of fatty liver because two readings came back a bit high. He took blood and invited me back for another ultrasound in six months and another Fibroscan next July. He talking about after that he probably won't have to see me again. If I don't have cirrhosis then no need to do ultrasound and check for liver cancer. I was surprised to say the least.
It was a wonderful visit. It is so nice to get good news instead of the doom and gloom of the past 20 years.
I am so happy for all the folks out there getting cured.
Good luck and I will check in now and then.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1116
   Posted 7/15/2016 10:45 AM (GMT -7)   
hey Dog,
nice visit... congrats on your liver damage reversal.. and no more HCC anxiety

my hepatologist started me on CT scans every 3 months. my twin brother was diagnosed with HCC and is going thru transplant evaluation.. my last fibroscan was a 4.5 kpa.. which is also f0-f1.. I also had a couple areas that were 7.5 kpa. he described those areas as having a few wisps of collagen, that will not likely improve..


I agree with your take on hepatologists... if you are cirrhotic, you should be followed by a hepatologist..
they are the only ones who can deal with the complications that cirrhosis presents...

best of everything to you DOG

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 7/16/2016 4:31 AM (GMT -7)   
Thanks, ppm! Your info helps me to gain some perspective.
Most of my Fibroscan readings averaged in the 6's, which he said is about F1.
Out of say 12 or 15 readings, there were a couple of 9.somethings and a 10.something.
He said if my readings next year are in the fives, no need to continue.


I grabbed the Fibroscan info from website:
http://hepatitiscnewdrugresearch.com/fibroscan-results-the-scoring-card.html

"A person with chronic hepatitis C and a liver stiffness more then 14 kPa has approximately a 90% probability of having cirrhosis, while patients with liver stiffness more then 7 kPa have around an 85% probability of at least significant fibrosis.

However, research has shown Fibroscan accuracy in assessing lower degrees of liver fibrosis (F1-F2) is not as reliable compared to diagnosing advanced fibrosis and cirrhosis (F3/F4)."

So what if it's not that reliable in the lower ranges. If they do a biopsy and grab a bit of healthy liver they may diagnose you as F0. If they biopsy a bit of cirrhotic liver they may diagnose you as F4.

And you hit the nail on the head. "No more Hep C anxiety." I have actually been happy and I don't think about HCV anymore.

Keep up the good fight and take care, brother.
Mar 1, 2016 Ultrasound Clear, bilirubin 1.4mg/dL, platelets 143k
Feb 25,2016, HCV Undetected
Oct 15, 2015 12 wks Post Trtment, HCV Undtcted, all enzymes normal, but bilirubin 1.7, low platelets
Jul 15, 2015 End treatment Harvoni 24 weeks
Dec 14, 2014 Alt/Ast 365/207, Bili 1.1 (normal)
May14: 2014 Interferon, Ribavirin, Sovaldi, Undetected / Relapse
HCV Geno 1a, Compensated Cirrhosis

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 8/21/2016 10:43 AM (GMT -7)   
Hello, all!
I've been sleeping at least six hours a night. All I can think is WOW! I got so used to waking every 2 or 3 hours during my HCV anxiety days.
I found a group on Facebook called Harvoni/Epclusa HCV. I've enjoyed the comaraderie there.
Besides life, not much else going on.
I wish you all well.
07/2016: Ultrasound Clear, Fibroscan 6 kPa (F1 fibrosis)
02/2016: HCV Undetected 6 mo post treatment
10/2015: 12 wks Post Trtment, HCV Undtcted, all enzymes normal, but bilirubin 1.7, low platelets
07/2015: End treatment Harvoni 24 weeks
12/2014: Alt/Ast 365/207, Bili 1.1 (normal)
05/2014: Interferon, Ribavirin, Sovaldi, Undetected / Relapse
05/2014: HCV Geno 1a, Compensated Cirrhosis

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1116
   Posted 8/21/2016 7:19 PM (GMT -7)   
hey Dog,
So glad to hear things are good..yes sir!!! the anxiety of dealing with hep c and treatment failures are history..

I also found a facebook group that deals with advanced MS. ive had ms all my life.. they are a proactive group that helps people find treatments, that help, but aren't offered in the US. Right up my alley.
Well brother, keep the faith and stop in to say Hi

woofer5
Regular Member


Date Joined Jul 2015
Total Posts : 87
   Posted 8/22/2016 3:12 PM (GMT -7)   
Hey Dog...
At least 6 hours of blissful sleep every night!!!
Way to go Dog!
Glad to hear you're doing well.
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