Hep C Discussion Forum

JimmyK · Guru

RE: Test Results

CandaceV · Senior Member

Thanks to everyone for the helpful replies, truly appreciated!

Yes, we both feel like there's been a weight lifted off us. One disease down, one to go.

Tig · Admin

Glad to hear about your husband's successful surgery! That's excellent news. I agree that the likely drug protocol is Gilead's Sovaldi/Velpatasvir combination. The addition of GS 9857 is still in the trial stages. The FDA is expected to decide whether to approve the Sov/Velpa combination therapy by June 28. With high 90 to 100% SVR rates in many studies, it's going to be the next deadly weapon against this disease. It's a truly exciting time in the war against HCV.

Linuxter · Guru

Hi Candace,

Great news that your husband's surgery went well, glad to hear it!

I know it seems like it's taking a long time but one day in the not too distant future you'll look back and remark on how quickly it all happened and your husband will be HCV-Free ... these latest DAA drugs are remarkable and VERY effective ... perfect time to get treatment.

Wishing you both well,

Dave

wendyo · Guru

Glad to hear your husbands surgery went well. One down

Here is another article to check out......

http://www.hepatitisc.uw.edu/go/treatment-infection/treatment-genotype-2/core-concept/all

JimmyK · Guru

Greetings,

I am going to take a guess based on there being no name as yet.

http://hepatitiscnewdrugs.blogspot.com/2016/04/gileads-sofosbuvirvelpatasvir-and.html

Gen 2 patients are part of the study. Several here are on it or recently have completed treatment.

http://hepcfriends.activeboard.com/t61821193/im-in-started-the-8-week-sofvelgs-9857-trial/

Again only a guess but it is pretty close to approval so what the heck.

Congrats on the successful surgery! That is great news!

JimmyK

CandaceV · Senior Member

My husband had surgery to remove kidney tumor last week. It was Stage I clear cell renal carcinoma. They said they got it all.

The surgeon said Hep C can cause it, as well as his 12 years of Ibuprofen waiting for a knee transplant at age 60. He said it's not genetic, because that shows up before age 50.

He has an appt. with his gastro next month to discuss treatment. He said there's a new drug pending FDA approval, not named yet. Does anyone here have any information on this drug? It's for genotype 2. Thanks

CandaceV · Senior Member

CT scan of kidney showed "Mixed" cells, urologist wants biopsy, husband wants surgery, no biopsy. He's concerned cells will float around to his liver and/or lungs. Appt. to discuss next week. Sigh...everyone in his family has/had some kind of cancer, including kidney, so he doesn't want to take chances. About time!

CandaceV · Senior Member

Results of Fibroscan is 1-2, which is in the caution range, fibrosis doubled in a little over a year. Gastro wants to treat as soon as kidney lesion is resolved. CT scan for kidney was on Thursday, waiting for results, which should be today.

My husband is in full panic mode. Keep in mind it took 25 years of talking to him about Hep C testing, then he wasted another 7 years getting to this point. I'm in the anger phase. I wanted him to be tested because of night sweats - he still has night sweats, every night.

I'll be back in touch when we find out what the kidney lesion is.

CandaceV · Senior Member

Thank you..much appreciated.

CandaceV · Senior Member

Thank you! Yes, it's a Fibroscan, I called and asked them. Still waiting for approval from Medicare. I'll read your links. It's been one heck of a year.

At least at this point, he knows he needs treatment. I showed him link after link saying Hep C can cause kidney cancer. It may or may not be the cause, it may or may not be cancer. He's a former smoker who worked industrial construction for 30 years (asbestos) and took Ibuprofen for 15 years, with a brother that had it. Take your pick, looks like the perfect storm to me.

I will be in touch when I know more.

JimmyK · Guru

Hi Candace,

Please do not let fear over take you in this. It will work out. The ALT is not all that bad and the fact that a PetScan did not identify something is pretty significant. That is one heck of a test!

Try and stay calm and follow the Doctors advice. If he feels the someting is worth waiting for then that is also indicitive of the level of urgency.

God Bless!

JimmyK

Tig · Admin

Hi Candace,

Welcome back! I think the no name treatment you're referring to is the Abbvie trials with ABT 493 & 530. I'll leave a couple links to some discussion and info. There are a number of new things on the horizon. It looks very bright for the future!

It sounds like you and your husband have had a long year. I hope things are heading in the right direction. I think you're both more than ready for a break.

Good luck with everything and I hope you let us know how the appointment with his Gastro goes. The scan you spoke of is probably the Fibroscan, a non invasive specialized ultrasound that measures liver density. I want to mention that Milk Thistle very often reduces the ALT/AST results. Whether it actually provides such improvements or simply alters the numbers is debated. I took it for years and my numbers were reduced too, but my disease still progressed. Make sure you tell his Gastro that he is taking it. They will want him to stop it prior to starting any treatment. It won't be a problem in the interim. Let us know how things progress! Good luck smile

http://hepcfriends.activeboard.com/t61104146/abbvie-abt-493-abt-530/

http://hepatitiscnewdrugs.blogspot.ae/2016/01/abbvie-initiates-enrollment-of-six.html

CandaceV · Senior Member

This thread is nearly a year old. Here are the updates.

My husband had his gall bladder removed, a fat tumor removed on his back, and a knee replacement since then. All of his bloodwork relating to these surgeries has been normal. He started taking milk thistle and his ALT went from 54 to 32. I called his gastro in December, couldn't get an appointment to discuss treatment until last week, but more about that later.

EKG showed a right bundle branch block, which has been there since all these surgeries started. Heart doctor gave him a stress test and he did very, very well. No blockages, told to come back in a year.

He had a physical in January this year. I insisted on a chest x-ray because he's a former smoker. They found 2 spots on his right lung, CT scan 10 days later shows they're getting smaller. They think it's inflammation from a recent sinus infection draining into his lung and follow up in 6 months. However, the CT showed a kidney tumor. PET scan showed more detail, but can't be sure if it's cancer or not. Keep in mind he's been taking Ibuprofen for 15 years because of a bad knee. Appointment Monday with urologist to investigate tumor. His brother had kidney cancer, but his tumor was inside the kidney, removed, and he's been ok for many years. My husband's tumor is on top the right kidney.

Blood work from physical showed ALT of 38. MCH (height of red blood cells) was slightly high. Serum sodium was slightly low at 132.

Gastro appointment - of course he won't discuss treatment until the kidney tumor is treated. He said to forget Sovaldi, there is another drug coming in a few months that's only 1 pill a day, used for people who haven't yet tried treatment. He is sending him for some kind of super-duper scan of his liver to check for fibrosis.

Does anyone know about this new drug? Gastro said it hasn't been named yet, still in FDA approval but coming in a couple months. Thank you, as usual, I'm terrified he's waited way too long.

CandaceV · Senior Member

Thanks so much, I will call them. I had no idea there was no money...

I'll keep in touch when I have news. I appreciate the help.

Tig · Admin

Hi Candace,

The rules and regulations are changing with the tides. The enactment of Obamacare has fundamentally changed our healthcare system and unfortunately nobody was prepared for the changes it has made to the former system. Those changes are very wide and the government programs like Medicare, Medicaid and the VA have been hurt by the cuts and inability to fund what's left. These brand name drug prices are to blame.

These new protocols are obscenely expensive and these agencies, as well as insurance carriers weren't prepared for the onslaught of requests for treatment. So basically IMO, the money doesn't exist for this fiscal year, it was exhausted almost immediately. I hope that next year we will see some improvements in both funding, availability and access to treatment. Without all the hoops we are dealing with today.

With that said, have you talked to Gilead's Support Path program? If your husband has two denials for treatment, they will often cover the costs of medication. They can explain their requirements when you call. There is a link to the Payment Assistance programs in my signature. Things will hopefully be better in the coming year, as well access to new protocols. Give your husband our best and please let me know if I can be of any assistance.

Tig

CandaceV · Senior Member

Well, it's official. Medicare won't pay for treatment for my husband.

In the meantime, he had his gall bladder out, his ALT went from 42 to 54. Still not enough for Medicare to pay for treatment. His gastro won't commit to tell us where he has to be in order to get it paid.

Does anyone here know what Medicare's guidelines are for payment? I called them, they said it's on a case-by-case basis. No kidding. I wanted to know the guidelines and they won't tell us.

Thanks...

CandaceV · Senior Member

Thank you (HUG).

I check in here from time to time to see if there is anything new and will continue to do so. I couldn't have come this far with him without the support here.

Tig · Admin

Hi Candace,

I'm sorry for your grief and believe I understand your despair. But our advice will continue to be supportive and hopefully educational. Do what you can to maintain your knowledge base on current and upcoming treatments. With the advances in care that we have seen these last two years, who knows, there might be something soon that requires a simple vaccination or one dose cure. I know they're working on it and can tell you that three years ago, I wouldn't have believed the advances we are seeing today. So keep your spirits up and trust that advances in medicine will provide you with the results you obviously desire. It's just going to take a while longer. If your husband's liver health is in fair condition as the doctor mentioned, then he has some time to wait for the next generation treatments. Hang in there and good luck! We'll always be here for you...

Tig

CandaceV · Senior Member

Thanks for your reply. I do get it, but the doctor said, "All I have is good news for you. Your liver is in excellent shape and whether to treat or not is completely up to you."

It took 26 years to get him this far in the process, all of my heartache over it was for nothing. My husband will never agree to treatment now. I think the doctor's advice has more to do with who is going to pay for it since he's not in liver failure, so we'll wait until you are and Medicare will pay. I give up.

mallani · Guru

Hi Candace,

'Excellent shape' is not the words I'd use for a liver with Grade 1 inflammation and piecemeal necrosis. As a Geno 2 , hubby is easy to treat with Sovaldi/ Ribavirin, and I'd be getting treated as soon as possible. Cheers.

CandaceV · Senior Member

Thanks for your reply. I tend to agree with you - I'm going to investigate if Medicare would pay. My husband also has a supplemental policy through his former employer (he's retired). If they'll pay, I'll encourage my husband to consider treatment. Thanks again.

Rubye · Senior Member

Medicare paid for my treatment with no problem. However, I did have a huge problem finding a doctor who would write a prescription for the treatment drugs. Unlike your husband, I have cirrhosis but I have heard of Medicare paying when a person does not have cirrhosis. If he receives Medicaid as a supplement, Extra Help, to his Medicare they would probably deny him.

However, my advice would be to get the prescription and run it through your Medicare insurance provider. If they deny it twice, the second time being on appeal, then Gilead's Support Path should provide him with the drugs at no cost. That is if your income is low enough. I had to see three doctors to simply get a prescription so you may have to be tenacious.

http://www.mysupportpath.com/

I used to think that if a person is healthy in spite of the Hep C they should wait for treatment on the basis that no one really knows what long-term effects these drugs may have on a person. But now I lean more toward getting treatment as soon as possible so to prevent the Hep C from taking a huge toll on your body. Hep C can cause serious damage over time, from arthritis and neuropathy to memory loss and possible cirrhosis. I understand putting off treatment. I had Hep C for over 40 years and just now finished my first treatment. I waited too long and now have neuropathy and cirrhosis.

CandaceV · Senior Member

My husband had a follow-up appointment today with the gastro regarding his liver biopsy. The doctor said his liver is in excellent shape and not to come back for a year, as his stage grading of the biopsy was 0 out of 4.

He said that Medicare wouldn't pay for treatment with that kind of biopsy result, so he should just watch for bleeding, yellow skin, etc. and come back annually. He also said he's a genotype 2, which would be "easily treatable" with Solvaldi and Ribavirin if the need arises.

Thanks to everyone who held my hand during this, I truly find the people here most informative, helpful and I appreciate you.

Candace

Cinnamon Girl · Guru

CandaceV wrote:
Thank you - and I'm so sorry about your husband. (HUG)

Thanks Candace, I appreciate your kindness. I`m glad you found us.

Keep us posted, and good luck! smile

CandaceV · Senior Member

Thank you - and I'm so sorry about your husband. (HUG)

Cinnamon Girl · Guru

I understand what you mean about fear being the ultimate reason for your husband`s refusal to face his health problems, and that was the case with my husband too. I was also a bad wife in his eyes...I nagged him about his health and was also disloyal for telling the doctor about his drinking, so he told me repeatedly. It`s not a pleasant role to take on, and certainly not one we`d choose!

I`ve always thought that as adults we should take responsibility for our own health as much as possible and it`s extremely frustrating when the person you love doesn`t share your viewpoint.

I wouldn`t wish this on anyone and you have my full sympathy!

CandaceV · Senior Member

Hi Jill, thank you for your encouragement. He's been ignoring his health for so long because it costs money. His family was poor and he's the youngest of 10 kids, so I suppose that's one reason for his attitude. And it's not like we don't have the money for doctors! He went on Medicare in August, and he has a supplemental policy through the union, so it costs $145 for Medicare's deductible per year, and he pays nothing else. There. Is. No. Reason for not going to doctors.

Except of course fear. I want you to know I'm not making excuses for him, far from it. I married someone who lives in fear of everything, and he's a tight wad to boot. He says I'm disloyal because I don't support his health decisions. So I'm disloyal. I want him around as long as he's not suffering or in pain. I guess that makes me a bad wife in his eyes. Too bad :) Thanks again.

Cinnamon Girl · Guru

Hi Candace,

I just want to say that I really feel for you with your ongoing struggles to make your husband aware of the risks he`s running.

I had a husband who was also in deep denial about his Hep C infection for many years, and refused to take it seriously even after he`d been diagnosed with cirrhosis and varices and was suffering from other complications too. I say `had` because unfortunately he`s no longer with us. I`m not saying that to scare you...my husband refused to stop drinking alcohol so the damage was greater...but I just want to agree wholeheartedly with what Duane and others here have said about how important it is for your husband to realise that he should look into treatment options now and not leave it till he has more serious liver damage.

I hope you can persuade your husband to read these replies and I wish you the best of luck!

CandaceV · Senior Member

I agree with you 100%. I'm going to have the gastro lay it all out for him. I've been telling him exactly what you've written for years and years. I've decided to send the gastro an email before his appointment to make him aware of my husband's denial and misinformation. I've had it with him on this subject. He has no clue how lucky he is that he's still alive and with only mild damage.

I appreciate your advice :) I need all the help I can get. It took 26 years to get him to agree to testing, then another year and a half for the second test that shows the virus count, then another 2 years for the virus genotype test. Then another 7 months to get him to go to a gastro. Ridiculous!

Tig · Admin

Amen Duane, amen...

Tig

Dzdayscomin · Senior Member

The virus does extensive damage whether you drink or not, the sx of todays tx's are pretty tolerable and waiting to be in a fail condition is not a good idea, put it to him this way.....if you think the sx of tx are bad they are absolutely nothing compared to the effects of a failing liver, so its like having a sliver being treated or being impaled with a 2x4 with a failing liver....so if he thinks he can't handle the tx he'll be in a world of hurt when he's dealing with paracentesis, ascites, arthritic conditions, headaches, severe fatigue, annual upper endoscopies, insomnia and a host of other issues.

Tell him he does not realize the opportunity he has to prevent a life of misery by waiting until you have no choice....plus tx is much easier on a healthier person than a very sick one.

Good luck and please take this as support and not b----hing

Duane

CandaceV · Senior Member

Hi Duane, I doubt my husband will want treatment unless his liver starts to fail, he won't tolerate side effects - he's a huge baby, and loves to live in blissful ignorance. It took 30 years of prodding to get him to agree to testing. He thinks that because he doesn't drink, his liver won't fail. I'm going to ask the gastro very specific questions so my husband will face the facts of the disease.

CandaceV · Senior Member

Thanks, Matt, for the encouraging words. I'll report back in January after he talks with the gastro. He probably should have regular bloodwork to check liver function. And if that's all he needs at this point, it's a miracle. The gastro has told him that his type is easily treatable, but my husband won't tolerate side effects, so I doubt he will opt for treatment at this point.

Matt Chris · Guru

Hello Candace

Congrats on the good report, with all the options for treatment coming out in 2015 you will be in excellent position to choose the best. Tell your hubby that all is well in his future.

matt

Dzdayscomin · Senior Member

Sounds like an easy treatment for the Meds they have now.....best of luck that you'll get a tx program for xmas!

Ho ho ho

God Bless,

Duane

CandaceV · Senior Member

Thank you!

Tig · Admin

Hi Candace,

Welcome back! Sounds like your husband is getting things taken care of and that's great. The biopsy is about as good as you could hope for. The report shows only mild inflammation (mild activity = 1) and the fibrosis = 0, with no evidence of fatty liver (steatosis). The hemosiderosis is evidence of higher liver iron levels but only mild. I would be pleased with a biopsy like that, it shows no indication of advanced liver disease. He should do well with treatment if the doctor decides to do it now. With results like those, there is no rush necessary but it's always a good idea to plan for treatment and avoid the possibility of advanced liver disease down the road. Good luck to you both!

Tig

CandaceV · Senior Member

Since my last post, my husband has seen a gastro. He said his type (which I don't know), is easily treatable and to come back after his gall bladder surgery. The gastro had the surgeon do a liver biopsy during the surgery last week, and he gave us the results this morning:

1. Liver biopsy - Chronic hepatitis with slight activity, grade 1 out of 4, and no evidence of fibrosis, stage 0. Mild hemosiderosis (I think this is iron overload). A trichrome stain reveals no evidence of fibrosis. There are a few lymphocytes present in piecemeal necrosis or periportal inflammation. The hemosiderin deposits are faint and present more cells. There is no steatosis or granuloma.

He has a follow-up appointment with the gastro in January to discuss treatment.

Anyone have any comments or advice? Thanks, don't know what I'd do without the people here.

CandaceV · Senior Member

mallani wrote:
Thank you, Mallani, the PCP was wrong, way wrong. Even I could see that!
I'll do my best to get him to a gastro.
On edit, the only elevated liver enzyme is the ALT, by only 1 point. 40 is normal, his is 41.
My fear is as it always is with him - if it ain't broke, don't fix it. I really, really need to find a good gastro to talk to him.
Candace

Hi CandaceV,
Obviously hubby is Detected with a VL of 4.77 M i.u./ml. This is fairly high. His Ultrasound findings are pretty vague, with a possible fatty liver and gallbladder sludge. He needs treatment. Good luck.

-- Edited by CandaceV on Friday 10th of January 2014 10:19:57 PM

mallani · Guru

Hi CandaceV,

Obviously hubby is Detected with a VL of 4.77 M i.u./ml. This is fairly high. His Ultrasound findings are pretty vague, with a possible fatty liver and gallbladder sludge. He needs treatment. Good luck.

CandaceV · Senior Member

Ok, here are the results:

Test - Hepatitis C RNA Quant

Result - 4770000

Reference Range: Undetected

Unit: IU/mL

Result in log IU/mL is 6.68

The quantification range of this assay is 15 to 100,000,000 IU/mL (1.8 log to 8.00 log IU/mL)

Testing performed by the COBAS AmpliPrep/COBAS TaqMan HCV test, v. 2.0 (Roche Molecular Systems, Inc.)

Test performed by Mayo Clinic Laboratories

His PCP says it's undetected. But I'm not reading it that way - the Undetected is the Reference Range, not the result.

I guess I'll get a referral to a gastro.

Now for the liver/gallbladder ultrasound...

Findings:

Pancreas appears grossly normal in appearance. No significant dialation of the main pancreatic duct identified.

Liver is slightly increased in echogenicity without discrete focal lesion identified. No significant intrahepatic biliary dilation is noted. Hepatic flow is demonstrated in the main portal vein. The common bile duct mesures 4mm in diameter.

There is question of gallbladder sludge within the gallbladder. There is a shadowing echogenic focus. No pericholecystic fluid or gallbladder wall thickening noted. Negative sonographic Murphy sign.

Impression:

Possible hepatic steatosis (fatty liver?)

Cholelithiasis (gall bladder disease?)

Hopefully, I can get my husband to agree to go see a gastro. Any insight you can give me in to these tests is appreciated. Thank you.

Candace

Tig56 wrote:
Hi Candace,
I think you need to get those results reconfirmed. That doesn't make sense to me. First of all the test shows a "Quantitive" value of 4,770,000, that's almost 5 million viral copies. If it were indeed undetected, that number would be zero. Something doesn't add up correctly. If you can get a copy of those test results, you should for your own records. Let us know what you find out from the doctor.
Tig

CandaceV · Senior Member

Hi Tig, thanks for your reply.

The nurse will mail a copy to me on Monday, if the office is open (more snow and bitter cold). I'll post it when I get it.

It makes no sense to me either, and I know nothing about the test. Either it's Undetected or he has 5 million. Can't be both. Thanks again.

Candace

Tig · Admin

Hi Candace,

I think you need to get those results reconfirmed. That doesn't make sense to me. First of all the test shows a "Quantitive" value of 4,770,000, that's almost 5 million viral copies. If it were indeed undetected, that number would be zero. Something doesn't add up correctly. If you can get a copy of those test results, you should for your own records. Let us know what you find out from the doctor.

Tig

CandaceV · Senior Member

Hi, I was able to get phone results of my husband's test.

First of all, he was tested last summer for Hep C reactive, and it was positive. It took a long time to get him to agree to go back for more testing. The results of this test was "Undetected with a Quantitative number of 4770000".

Can anyone help me understand what this means? The nurse said the doctor is gone already today and left for a week's vacation. Any insight into this would be much appreciated, thanks.

Candace

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