Hep C Discussion Forum

Bob57 · Member

RE: kind of lost

Loopy Lisa · Guru

Bob, you have been very brave, loving to a person in need, when you were too. It makes you a very special person, and your friend was most certainly lucky to have you. I am sorry for your loss, there are never any words that can give comfort. I am thinking about you...

Linuxter · Guru

So glad to hear of your SVR, Congrats!

No small task ... you're a Warrior and a Dragon Slayer!

Glad to hear this Bob.

Still sorry to hear about your friend, they would be pleased to know that you are HCV-Free.

Dave

wmlj1960 · Moderator

AWESOME!!! That's great news Bob and it's not too late for an SVR party. Get those dancing shoes on and get ready for a belated victory dance. Welcome to the dragon killers club!

robertsamx · Guru

Glad you cleared the virus Bob. Sorry you lost your friend. RC

JimmyK · Guru

!

Fantastic!

Bob57 · Member

Hello friends!

Sorry I haven't been around, things just got a little crazy .

I realized I never posted this but I'm in the SVR club !

Got a Fibroscan and was told F2 .

Bob

JimmyK · Guru

Greetings Bob,

I do know the feeling my friend. My closest Brother by nature of how I ride was taken in the same manner a few years back.

Shortly thereafter, I was asked to fly to Colorado to be with my Mother In Law and to be the strong one needed to authorize my Brother In Law, her Son be removed from Life Support. That was a tough one for me.

Now I am one of many Warriors left standing in the battle and I battle on in their honor and it has made even my recent failure a simple retreat for a moment to regroup and again bring forth the fight that is in all of us here to the Dragon.

Brothers are lost in Battle but they are not forgotten nor are they diminished at our side for their hearts remain beating strong within us who fight on.

Your brother is with you so make him proud my friend. ;) There is no White Flag.

JimmyK

-- Edited by JimmyK on Friday 8th of January 2016 11:10:13 PM

wendyo · Guru

Dear Bob,

Hard to come up with words at times like this that are not cliche or insulting. I am sorry for your loss. PLEASE remember to take care of yourself during this time. Grief has no timetable and will come and go. Just use your friends, support system and take time for you but try not to isolate. (Balance)

Stormy · Veteran Member

Hi Bob, sorry to hear of your friends passing. I, too, just lost a friend of 40 years. So many thoughts and memories flooding the mind at all times of day and night. Hope you have a good support circle. And remember the awesomeness that is this board.

Peace

stormy

Tig · Admin

Hi Bob,

I'm saddened to hear about the loss of your friend. I'd also like to extend the condolences from all of us. Please let me know if there is anything I can do. You know we're here to talk, anytime. May he rest in peace... Take care of yourself.

wmlj1960 · Moderator

I'm so sorry to hear this news Bob. This is a reminder for me to be grateful for each day, and for my friends who try to help me through the tough times, like you did with him. I'm sending my prayers for your friend and also for your upcoming SVR report in February.

Linuxter · Guru

Sorry to hear of your loss Bob, your being there for him helped give him a better quality of life during the time that he had left, we all send our condolences.

Take good care of yourself, it's very important for you to eat well and keep hydrated after Tx also.

Wishing you Well,

Linux

-- Edited by Linuxter on Wednesday 6th of January 2016 03:16:24 AM

Bob57 · Member

Hi everyone

I don't have good news, my friend passes away yesterday @ 5:45 AM.

The TIPPS or liver bypass failed.

Love, peace and good health to all in the new year

Bob

wmlj1960 · Moderator

He's lucky to have you for support. Tell him he has some cheerleaders here on the forum too. We are all here to support each other and that includes him. Do what you can for him but as Tig said, take care of yourself too. smile

Groupergetter · Guru

Bob, sorry to hear your friend is having such rough times. He's fortunate to have a friend that is supportive and cares. Your finishing treatment is another big step towards SVR. Will be waiting to hear the good news. Take care.

Bob57 · Member

Thanks you and everyone here for the support, this forum has been a real blessing for us both !

I'm going right now to check on him take him some dinner and just keep him company.

Just saying thanks isn't enough to tell you how much I appreciate the caring support here.

Tig · Admin

Hey Bob,

Your friend is in a tough place, he's fortunate to have your support. Sometimes that's all you can do, and very often, it's enough to get them past the worst of the fear and depression. Just keep working at it and if we can help you, you know we'll try.

The Tips procedure is life saving for many with severe hepatic impairment. It will diminish the risk of a varicies rupture almost immediately and obviously they are concerned that it's a high probability. You're right that the encephalopathy can increase, but I have to believe they will try and control it with medication. Long term Lactulose and short term Xifaxin can be very helpful, but I'm sure that's likely part of his program now. One day at a time and one problem at a time is the best approach.

As badly as we all want an immediate solution, we know it was a long process (most of the time) to get to that advanced stage. So remind him, that each day there is no decrease in health, means the body has had a moment of rest and with that comes some repair and recovery. It will take a longer period of time than most understand. If you see him on a regular basis or are able to speak with him, I suggest you consider starting a journal. It's helpful to keep track of even small changes. It doesn't take long to see small improvements that may be missed by the patient. As his physical and mental health improve, the journal can provide him with some indication that life will get better. Even if they're small steps, they are still steps in the right direction. It can really improve the depression.

If he gets transplanted, the improvement will be fast, so that should be part of the discussion, but it could be a time consuming and stressful journey until that happens. So try and concentrate hopefully on the early improvements and keep the transplant as another future goal. Small successes will eventually lead to the overall improvements you are both hoping for. Help him concentrate on those. I wish you both all the best, you're a good friend Bob. Just do me a favor, don't forget about your own health, you're pretty important too...

Bob57 · Member

Thanks for the encouragement, I'm looking forward to the final test and SVR.

My friend isn't doing so well he's gaining more fluid then is being taken off weekly, they drain 5 liters every Monday but the last 3 weeks he's gained 15 lb more fluid. So they are going to do the TIPS or liver bypass Dec 1st, he's starting to get brain fog and is confused sometimes.

I read as much as I can about his condition and what his outcome will be but there's so many factors involved.

Although the bypass will help with the fluid gain and decrease the chances of vortices rupturing in his esophagus I'm worried the brain fog will become worse with the blood bypassing the liver.

His only hope at this point is a transplant but I don't know how much time he has if it's a long wait, at his age, condition and also being diabetic I'm really worried. Hopefully the bypass will help turn things around and at least get him mobile again.

It's getting harder to keep him positive, I just keep telling him it isn't over until you give up.

Bob

wmlj1960 · Moderator

Job well done Bob. Those numbers look great. SVR party scheduled in 12. How's your friend doing?

Tig · Admin

Congrats on finishing treatment Bob! Well done my friend! Your numbers do look very good and I'm confident they are an indicator of the promising news you seek. SVR is in your future, the countdown begins....... Stay positive, it's easier that way, lol! Good luck buddy!

Bob57 · Member

EOT 11/18 smile

Blood work looks pretty good, Dr. said I have moderate scaring.

Now the 12 week count down to SVR !

coolheat · Senior Member

Congrats on your Undetected Bob, take care of yourself.

Cinnamon Girl · Guru

Sounds like you`re doing great, Bob, and congrats on your undetected result!!

You`re doing a wonderful thing taking care of your friend while he`s going through his cancer treatment, and he must be so grateful to have you with him.

Make sure to take time to look after yourself too, keep yourself well hydrated and eat as healthily as you can.

Great to know you`re on track and the treatment is working well, this result must have given you such a boost! smile

wmlj1960 · Moderator

That's good news about your undetectable VL Bob. This next 5 weeks should be much easier on you and EOT will be here before you know it. Remember to stay well hydrated. I hope your friend is doing better. smile

Tig · Admin

Congrats on the undetected VL Bob!! Sounds like everything is going your way. Keep it up and start planning for that Hep free future, it's on the way!

smile

Bob57 · Member

You may be right DM, I've been back to the normal 1mg 3-4 x a day for a couple weeks.

The first 8-10 days were a little rough, much better now, or I'm just getting used to the effects ?

My non detected VL was just posted on line and even though the Dr. called and told me it was nice to see the Lab report.

5 more weeks to EOT smile

drummerman · Senior Member

Bob57 wrote:
This is so new to me I don't even understand all the blood work results yet.
Just started the Viekira pak with the 4 pills on Thursday "ombitasvir, paritaprevir, ritonavir and dasabuvir .
I also take Xanax and remeron, the Dr. told me the viekira could cause my other meds to seem stronger so I'm cutting the dose.
Even so I cant hardly function I have no energy at all.
Will this get better or am I going to feel like this for 3 months?

Hi Bob,

I just realized... your doctor said that viekira "would" increase the effect of xanax... this is not accurate. It may increase the effect of xanax.

With me I could tell no change at all and continued to take the .25 xanax, and then went to 1.0 time release xanax.

dm

Tig · Admin

Hi Bob,

I'm sorry your friend is going through such an ordeal. That's never easy, even on a good day. Let's count on this treatment helping and improving his quality of life. When a person feels so poorly, each small improvement eventually adds up to one big one! He's lucky to have such a good friend in you. Give him my best.

It's nice to see an early undetected viral load, but the importance of that early UND isn't necessarily what it once was. I read a report yesterday that mentioned some doctors have seen detected VL's at EOT, following tx with the new DAA's. They aren't making any judgements until the EOT +12 tests now, because many are going on to SVR anyway! So for those that are clearing late, don't give up hope! Since you have just received the good news, congratulations are in order! Enjoy every success along the way Bob, you earned each one, the hard way... Keep it up, you're on your way buddy!

Bob57 · Member

Sorry I haven't been keeping up on the forum, taking care of my friend with liver cancer is getting to be a full time job.

We went for his first radiation treatment Wednesday, still getting 5 liters of fluid drained every Monday.

He's lost so much weight and muscle he's become wheelchair bound.

Got my 4 week blood work done and it wasn't so great, still had a VL that was a concern to my Dr.

BUT,,, after a re test a week or so later the Dr. called with good news!

The VL results haven't been posted yet but it was a relief to hear I'm on track, ALT & AST in normal range smile

Bob

Bob57 · Member

Ok I'm gonna quit worrying so much and concentrate on taking the meds on time and keeping hydrated.

Thanks Jill smile

Cinnamon Girl · Guru

Hi Bob, no need to be alarmed by those numbers, we see people with much higher viral loads which drop down very quickly within the first few weeks of treatment. Your ALT and AST are about what you`d expect to see with a Hep C infection and I`m sure you`ll see a reduction in those numbers on your next lab report.

You don`t need to be overly concerned about having a degree of fibrosis either, that`s quite usual and will almost certainly improve once the virus has been eradicated and your liver starts to recover. The main thing is that your doctor is monitoring your progress, so try not to worry.

Bob57 · Member

I did kinda freak out when I saw the viral load and the ALT after learning what it means.

Not sure how to find the fibrosure test but will ask the Dr next week "2 week test" if one was done.

I'm so glad I found this site, thanks everyone for the support and info !

Bob

Tig · Admin

Thanks for the info Bob. The ALT is elevated, but that's indicative of the HCV and the damage it starts causing. The AST is still WNL. They will both show a significant reduction by the time they draw your next tests. They always improve on these new treatments. Your viral load is high, but it doesn't impact your rate of success one way or the other. Sometimes if it is below 6 million and the patient is treatment naive, they will consider 8 weeks of Harvoni. Obviously that doesn't apply in your case.

The Fibroscan is a specialized ultrasound that measures liver density, which in turn determines the fibrosis stage (F0 - F4 Metavir scale) and the Fibrosure is a blood test that is supposed to measure markers that will provide the same information. The biopsy of course samples liver tissue and has been considered the gold standard in determining fibrosis. The new approaches to fibrosis determination are getting more and more reliable. The important thing is your doctor is aware of yours and monitoring it. It is nice to know what they have staged yours at though. Your doc should have that information available.

Bob57 · Member

Hey Tig, I've never been treated before I do have some scaring Shown on the MRI and a biopsy was talked about but the Dr said for now we would just monitor it.

Don't know about a Fibroscan or Fibrosure test I'll have to research that a little.

VL 6,220,000 IU/mL ALT 77 AST 46

Groupergetter · Guru

Hi Bob,

Welcome to a great forum. My knowledgeable, and caring folks here. Glad to hear you're getting started on tx. Time flies and you'll reach SVR before you know it. Please keep us posted as to how you are doing. The new meds are very effective. Good luck, and be well.

Tig · Admin

That tells me your genotype must be 1b. The VP manufacturers information says 1b is the only genotype that the VP protocol omits* Ribavirin. I mentioned Ribavirin in my first post to you because I assumed the rapid fatigue was probably due to it. Goes to show me, I shouldn't assume! You're not missing anything by avoiding that stuff! It's one of the drugs we all wish we could've avoided. You should do well without it as a 1b. The rates of success are very high across 1a/b genotypes using VP.

The tests to look for are the genotype, Viral Load, the ALT and AST. If you have had a biopsy, Fibroscan or Fibrosure test, in addition to the MRI, they will indicate inflammation and/or fibrosis (scarring). You can include them in your post or signature line if you want.

http://www.rxabbvie.com/pdf/viekirapak_pi.pdf#page3

* Provided there is no cirrhosis.

PS: Have you ever treated before?

Bob57 · Member

Wow thanks for the welcome and all the responses!

I don't see Ribavirin listed on the VP I'm on, is that an additional drug to the VP ?

Mona, yes the Dr. said pretty much what you explained about the Xanax & remeron .

I've been busy today but I will look at the threads and get started trying to learn what I can.

I do have access to all my blood work so I guess I need to figure what to look for.

Again thanks to you all for your help!

Bob

Edit: I do have liver scaring found with an MRI, I was told for now it would be monitored.

-- Edited by Bob57 on Monday 31st of August 2015 01:33:37 AM

wmlj1960 · Moderator

I'll bring this to my doctors attention. It sounds like you may be more informed about this issue than either my hepatologist or my HIV doctor. Actually, neither of them even bothered to check on this before I was prescribed the Harvoni. The pharmacy is the one who brought it to my attention after which I was told it would be monitored closely. Thanks for the information Mona!

Tig · Admin

Good advice Mona!

Mona · Member

Mike,

There is one med Midazolam, that can have increased blood levels and effects secondary to the Hep C drugs. Midazolam is a benzodiazepam as is Xanax (alprazolam). Xanax is not listed as one of the drugs but it stands to reason that drugs in the same class my may react the same in combination with the Hep C drugs.

Ritonavir may increase the blood levels and effects of mirtazapine (remeron). You may need a dose adjustment or more frequent monitoring by your doctor to safely use both medications. Contact your doctor if you experience increased side effects or your condition changes. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Quite simply, the problem is with drugs that use the same pathway through the liver to metabolize. The Hep C drugs will take the pathway (and you want them to right now) the other drugs will hang around in the blood stream because the pathway is in use and they can't be metabolized and excreted. So they are in essence stronger than usual, so lower doses are recommended.

Frankly, right now you want the HepC drugs to do their job, so talk to your doctor and avoid all unnecessary drugs.

Hang in it really gets better.

wmlj1960 · Moderator

Hi Bob.

Don't feel alone about not understanding the blood work results. I'm starting to feel like an old pro at Hep C treatment after ~ 1 1/2 years dealing with it and I still don't understand a lot of the blood work results myself. But don't worry. There are several very knowledgeable members here that will be happy to help you better understand what they mean. The main thing right now is to take care of yourself by eating healthy, getting your rest, staying well hydrated with plenty of good water, and staying compliant with your medicine schedule.

I'm just curious and am only trying to help but one thing that you mentioned is: " the Dr. told me the viekira could cause my other meds to seem stronger so I'm cutting the dose."

I also have a similar situation between the Ledipasvir (a component of the Harvoni that I take for Hep C) and 2 of the other medicines I take for HIV and for hepatic encephalopathy. But both of these are being monitored by my doctors via blood test and so far I have been able to stay on the full dose of all my meds. I'm just saying that you won't necessarily have an issue with this and your doctor can monitor your blood work therefore possibly allowing you to stay on your full dose of your other meds.

Anyway, make yourself at home and use the 'search' function if needed. You may see some abbreviations you are not familiar with and if so you can view a list of definitions by viewing this thread.

Welcome to the forum! smile

Penelope PePod · Senior Member

Hi Bob57,

Welcome to our elite group. smile My first week on viekira pak and riba was a bit rough, but it eased up from there.

I wish you all the best during treatment. These new drugs are powerful and can make you well again, so it's well worth the discomfort!

Penny

drummerman · Senior Member

Welcome Bob57!

Glad you're here!

dm

-- Edited by drummerman on Sunday 30th of August 2015 08:41:46 PM

-- Edited by drummerman on Sunday 30th of August 2015 08:42:04 PM

Cinnamon Girl · Guru

Hi Bob, welcome!

I`m glad you`ve found us, no need to be alone through this, you`re with friends here and we understand the difficulties people have while going through treatment.

You didn`t mention that you were taking ribavirin with your Vik Pak but from your description of fatigue it certainly sounds like it. As Tig said, riba is well know for causing lack of energy but there`s a good chance it will ease up once your system has adjusted to these strong medications.

Please feel free to tell us about any blood work you don`t understand and we`ll do our best to explain it to you. A little more informaton would be helpful too, for example your genotype and state of liver health.

Do keep in touch and good luck! smile

Tig · Admin

Hi Bob,

Welcome my friend! You're among a group that will help you through this and most of all, understand what you're going through.

The protocol you're on "VP", is known to cause some of the side effects you're experiencing. The initial onslaught of side effects should lessen after the first two or three weeks. The Ribavirin is likely causing some fatigue and will continue to be a source of some issues as long as you're on it. But those issues are manageable and we can help you with that. To begin with, make sure you're hydrating well. 3-4 liters of water per day, every day will reduce many of the side effects. These drugs can dehydrate you quickly. The Ribavirin can cause some anemia and moodiness. The anemia of course will result in fatigue, so be aware of that and get adequate rest and eat a well balanced diet. Recognize any changes in your mood and avoid situations that might anger you. It is well known to cause it.

There will be a lot of welcome' and friendly advice coming your way. I want to give you a link to our Viekira Pak Train thread. Lots of discussion there from people going through the same treatment. If I can be of assistance, let me know. We're here to help!

http://hepcfriends.activeboard.com/t59659874/all-aboard-for-the-viekira-pak-treatment-train-enjoy-the-rid/

Bob57 · Member

This is so new to me I don't even understand all the blood work results yet.

Just started the Viekira pak with the 4 pills on Thursday "ombitasvir, paritaprevir, ritonavir and dasabuvir .

I also take Xanax and remeron, the Dr. told me the viekira could cause my other meds to seem stronger so I'm cutting the dose.

Even so I cant hardly function I have no energy at all.

Will this get better or am I going to feel like this for 3 months?

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