Hep C Discussion Forum

Paul B · Senior Member

RE: Started Boceprivir yesterday

TeddyTrout · Senior Member

Ya I didn't even worry about them at all. Hang in and it will work it self out for you. Cheers

mallani · Guru

Hi Paul,

Good to see the Hb is stable. I wouldn't worry about the VL test. We know the result. I must say that when I had my 36 week VL, I didn't even bother ringing up for the result. Cheers.

Paul B · Senior Member

Hi Mal and Happy New Year to all

HB is 115. I don't think they have another VL test scheduled. I suppose it would be easy enough to do it independent of the clinic if I felt the need.

mallani · Guru

Hi Paul,

Good to see you're still hanging in there. Also good to see the Neutrophils and platelets come up a bit. What's your Hb?

Presumably the next VL will be at week 36. It will remain Undetected. Struggle on mate, we're rooting for you. Happy New Year- you'll be SVR in 2015.

Cinnamon Girl · Guru

Hi Paul,

Great to see that your blood levels are holding up, it was certainly worth having the extra test done for that.

It`s not really surprising that you`re feeling weaker as the treatment goes on, that`s to be expected really, but you`re getting through the weeks and sticking with it, which is the most important thing. It`ll be worth it in the end!

Keep going, and thanks for the update.

Happy New Year to you!

Paul B · Senior Member

So went in and had blood done today. My next contact with the clinic is Jan 20 but the staff wanted me to have an interim appointment on account of my low readings last time around.

So... Neutophils back up to .6, WCC 1.6 & platelets 93. Seems like my decision to ignore the request to dose reduce has been vindicated.

Overall though, I am feeling a bit weaker as time passes. But now at week 30, I feel the finish line is getting nearer.

Paul B · Senior Member

you don't need to tell me that.

mallani · Guru

Hi Paul,

I just wanted to add that anything posted on the Forum is not 'advice'. It's just a personal opinion, and you can take it on board or disregard it.

Everyone is different, but following established protocols is important. Cheers.

mallani · Guru

Hi Paul,

It's quite medically correct to say that a reduced WBC count 'could' lead to infections. The Abs. neutrophil count is the most important part of the blood picture.

When this count drops below 0.7, care must be taken-avoid crowded places etc. I wouldn't worry at this stage. As you say, there is no mention of this as a complication of the Victrelis triple.

I understand they are using Olysio at the Royal Brisbane Hospital Liver Clinic for F3's and F4's.

I've also heard that Sovaldi may go on the PBS after the March meeting. That'll please Joe Hockey!(our Treasurer). Cheers mate.

Cinnamon Girl · Guru

With your low levels of WBC you are more open to infection, yes Paul, and with low platelets there`s more risk of bleeding, which of course is why your doctor wants you to reduce your interferon dose. From my limited medical knowledge though I wouldn`t say your levels are at all critical. If your WBC drop any further there is a drug called Neupogen which your doctor may consider prescribing which will stimulate the production of neutrophils, which make up most of the WBC. This comes in the form of an injection.

In the meantime try and stay away from crowded places and as Malcolm said, don`t play with knives!

Malcolm may want to add more to what I`ve said but I don`t think there`s any need for panic.

Paul B · Senior Member

Thanks CG & Mal. Your support and advice is an important part of my decision making process. And in light of what you have both advised today, I feel vindicated in my decision to continue without modifying the dose in any way.

I don't feel too bad really. A bit different to how I felt cycling 300kms per week before treatment mind you. But overall, I expected I would feel much worse... so what the heck.

The only query I have left unanswered is something that came up tonight. My sister in law, who is a medical professional, said with the WCC & Platelets at their current levels I am in danger of infection... which could rapidly become very serious (fatal). However. I vaguely recall at sometime during my research reading a paper which suggested that there was no evidence of this happening during Hep C treatment. As a direct reaction to the treatment.that is.

Any thoughts.

(just had injection 28... full strength of course) When I got the text from my nurse today advising me of the Gastro's instruction to reduce dose, my response was;

"Damn the torpedos... full speed ahead"

Cinnamon Girl · Guru

Hi Paul, I must say I tend to agree with Malcolm and in your position I would also try to resist suggestions to cut your doses with those levels, until they drop lower at least. I know you must be really feeling it now with an Hb that low, but you`ve come this far and I know you want to see it through to SVR.

I can also understand how your wife must be worrying about you, but feeling dreadful is all part of the trip when you`re on such heavy duty meds, unfortunately.

It comes down to a decision between you and your doctor in the end and I wish you the best of luck.

You`re doing really well..just keep going and get as much rest as you can! smile

Paul B · Senior Member

Thanks Mal. My wife has been agitating for me to follow the medico's advice but I said I wanted a second opinion. And there is enough knowledge and experience here for me to trust I am making a well informed decision.

I feel crap... but I felt worse in 1998. I am reducing nothing. I have worked hard for 28 weeks. I am not going to jeopardise my chances by making unnecessary compromises now.

I might reconsider at week 36. Which means I will make a decision by week 40. Which in turn will mean that I should be able to hang on till week 44.... ah what the hell. SVR here I come !!!

mallani · Guru

Hi Paul,

Obviously you need to be guided by your medical team.

Firstly, the low platelets are mostly due to Interferon. There's no way I would reduce that, unless the numbers fell below 40. Don't play with knives!

Anaemia is 'defined' as having a Hb of <100. So you're not anaemic, so Riba shouldn't be reduced.

My doc (and his partners) think a Hb of 90-100 is desirable. They would not reduce Riba unless the Hb fell below 70.

I have previously said that RGT is not for cirrhotics. However, that's up to you buddy.

I know how you feel- my Hb ranged from 70 to 85 for the last 20 weeks. It's tough.

My clinic is not keen on Olysio.

All the best.

Paul B · Senior Member

Blood test today. As I expected, the numbers are heading south.

Hb 115 was 121

WCC 1.3 was 2.2

Platelets 77 was 95

Neutrophils 0.4 was 0.9

Seems like a sudden and dramatic drop relative to the gradual change I have experienced thus far. My nurse said today that it is time to dose reduce on account of the results. I just laughed and said that it is not going to happen. Anyway, she booked me in for more blood work in 2 weeks time as opposed to my normal month. She commented that the lab would probably contact the gastro direct regarding the low numbers. So it will be the start of week 30 when I do the blood, and since the clinic will be away that week, it will be week 31 by the time anyone contacts me should the results cause concern. They may insist I adopt RGT... but that is something I would be likely to resist. Having said that though, if I continue to fade at the current rate I may not have an option.

Mal I can confirm that my clinic is well into Simeprivir now. The current batch of patients have completed 4 weeks and are all clear. Boceprivir & Teleprivir no longer in use at the Royal in Hobart. And just for you, MCV stubbornly resists all efforts.

Anyhow... back to my numbers. What's the verdict?

PS. Well that didn't take long. Just got a text from the clinic.Supposed to reduce Int to 110 and 2 bd of Rib. Don't know what 2bd signifies actually. Anyway, I am just going to ignore it at this stage.

-- Edited by Paul B on Tuesday 16th of December 2014 04:46:43 AM

Paul B · Senior Member

mallani wrote:
Hi Miffy,
Great to hear from you. Glad you're still trucking along, although how you can work with those Hb levels is beyond me. Ah, to be young.
I know the feeling of the countdown to 48 weeks. Cheers and Happy Christmas.

I'm glad you chipped in with that. There is no way I could work and do this treatment. I managed it back in 1998 but I was 40 then. The years do make a difference for sure.

Anyhow Mzmiffy, fantastic that you are so far advanced, week 37, not long left now !!!

Champion effort by all of you for getting through to the end, particularly given the very low Hb levels.

Thanks to all for touching base, it is most encouraging. I will keep you posted.

Cheers to all and hoping you all have a blessed Christmas.

mallani · Guru

Hi Miffy,

Great to hear from you. Glad you're still trucking along, although how you can work with those Hb levels is beyond me. Ah, to be young.

I know the feeling of the countdown to 48 weeks. Cheers and Happy Christmas.

MzmiffY · Veteran Member

Hiya Paul! Its good to hear from you, I often wonder how you are travelling.

I know that weakness you speak of. Tonight is shot 37 and I feel a sense of excitement drawing closer to those single digits. The countdown to zero consumes me a little more these days. My HB sat in the 70's for most of treatment, however my last reading was 91.

A little less dizzy but still very tired. The biggest struggle for me has been forcing myself out of bed at 4am for a 6am start at work. Even on my only day off I still have to get up at 4 to take my meds. I won't miss that.

I appreciate how taxing this regimen is but we have so much to look forward too,

Stay positive but know we are always here if that becomes the impossible.

Be proud of yourself, your doing amazing!

x

Matt Chris · Guru

Hey Paul

You have a good attitude about seeing the finish line, its a great way to keep you going strong through the last part of the treatment. Walking in the fresh air like Tig recalled can do wonders for your body and mind.

Hang in there your doing great.

matt

mallani · Guru

Hi Paul,

Struggle on mate. It's worth it! At week 26 my Hb was 72, so I know how you feel. Try to do a bit of exercise to keep those muscles and joints working, so that you can enjoy SVR. Cheers.

hrsetrdr · Guru

Hi Paul,

I don't know how I missed this thread but, as a Vitrelis triple tx alumnus I am a little embarrassed to have made such an oversight. Anyway, best wishes for your successful completion of this grind, and on to SVR.

Tim

Tig · Admin

Hi Paul,

Since your Hgb in Nov was down to 121, chances are that its getting closer to 100 and if that's the case, you will feel extreme fatigue. I dropped to 90 and stayed there for the rest of Tx. I can tell you that I spent most of those days in my chair, reclined! That's one of the unfortunate SFX of your protocol. But as mentioned before, it's a good indication of the drugs doing their job. Do your best to get some exercise during the day. I walked when I could and that helped get me outside for some fresh air and a change of scenery. Let us know when you get your next lab results back and hang in there!

Tig

PS: Stay hydrated!

Paul B · Senior Member

Feels like I am becoming weaker. Will be interesting to see my Hb on Tuesday,

I surmise that my fitness bought me a credit which I have just about spent now. I thought it may play out like this.

With few days left till the end of week 27, I feel like I can see the finish line at last. Still 21 weeks to go mind you, so I will probably fall over it.

Cinnamon Girl · Guru

Wonderful, Paul, that`s the news we were waiting for!! biggrin

It was what we all expected, but I think everyone feels anxious while waiting for results until they know for certain, so congrats on that, you must be so pleased!

You`ve passed the halfway point now..just keep going and best of luck! And do keep us updated on your progress.

Tig · Admin

That's excellent Paul!! 24 to go, all will be UND I'm sure! Your Hgb is still hanging in there and I know you're thankful for that. You're doing it right and the results show it. Keep up the good fight and continued good luck!

Tig

Paul B · Senior Member

Und at week 24 !! As expected, but I was still apprehensive waiting for the result nonetheless.

My Hb was fairly high to start with (174), so that is a 5 point drop now. Will be interesting to see if the trend continues.

Love NZ... always nice to get away. I could do with a break that's for sure. No change in MCV.

Cheers all.

Cinnamon Girl · Guru

Well done, Paul, I`m glad you`ve decided to go the full course with victrelis, I`m sure you`ll be glad you did.

Your Hbg count is actually holding up pretty well, but even so you`re bound to be feeling tired and weak at that level, and I know it must be hard going. It will be so worth it in the end though!

Stick with it, day by day, you`re doing a great job!!

Let us know when you get your PCR result so we can celebrate with you! smile

mallani · Guru

Hi Paul,

Glad you're still trucking. The Hb drop is good, even though it makes you tired. What is your MCV now, just for interest?

You will still be Undetected, and I'm glad you're going to do the full 48 weeks.

I'm in NZ for another week. Keep it up mate. Cheers.

Paul B · Senior Member

End of week 24. Hb dropping further, now at 121. Rcc 3.96. Nurse said that the Hb level suggests that the Ribavirin is doing it's job. I felt encouraged by the drop.

I am guessing that the blood counts accounts for feeling even weaker and light headed.

Advised the nurse that I will be continuing Victrelis beyond week 36.

Generally feeling crap but grateful to be on the programme.

PCR result on Friday. Expecting good news.

-- Edited by Paul B on Tuesday 25th of November 2014 05:22:58 AM

Paul B · Senior Member

Thanks all. Feeling very supported here.

Matt Chris · Guru

Hey Paul

Whatever you decide remember it has long term consequences so you should also think about it a long while and do the research then you can feel comfort in the decision.

matt

Cinnamon Girl · Guru

Hi Paul, it can`t be easy for you doing a long stretch of tx and I`m sure the idea of dropping the victrelis early must be very appealing!

You`ve responded very well all the way through and it`s quite possible that you no longer need it, as your doctor suggests, but I guess at the end of the day you`d be taking a chance by going against the established tx protocol.

I think if if I was in your position I would delay the decision until you`re further along, but the final decision has to be between you and your doctor.

Best of luck with whatever you do, we`re here for you! smile

Scruffy · Guru

Hi Paul

I was undetectable at 4 weeks with Incivek. Only has to take the Incivek for 12 weeks. I could have stopped at 24 weeks. I had a heck of a time with my HB and towards the end my WBC also. I decided to go the whole course of 48 weeks, my Doctor smiled. If I relapse at least I did all I could and never have to guess " I should have done the whole 48 weeks". Up to you buddy

Best Wishes

-- Edited by Scruffy on Friday 31st of October 2014 01:15:28 PM

Groupergetter · Guru

Paul, whatever you decide we're hoping and praying this works for you. smile

Paul B · Senior Member

Hi Mal & Tig

well it is good to consider other opinions. I reckon if I can get to 36 weeks then another 12 is not going to be impossible. A big risk as you say.

mallani · Guru

Paul,

It's your decision mate. You know as well as I do that blood tests mean nothing in cirrhosis, and your AST and ALT are still not normal.

The liver ultrasound is very poor in diagnosing cirrhosis.

Remember that Victrelis is not a powerhouse like Sovaldi. It has a much weaker, steady action and you need to be sure the cirrhotic areas of liver are perfused. If you stop it at 36 weeks, you basically only have Peg. to protect you from the emerging RAV's. I don't think Riba is helping much.

Think carefully. If you relapse after this, future Rx options in Australia will be severely limited due to antiprotease RAV's.

Your doctor is going against every published protocol. Sorry, I mean well.

Paul B · Senior Member

Yea well the decision has been made but I doubt that I would have any problem if I decided I wanted to err on the side of caution and continue for longer.

If I can get to week 36, who knows. I may decide I can make it to week 40...

Tig · Admin

Hi Paul,

Has the decision to stop the Vic at 36 weeks already been made? As appealing as ending that part of your protocol might be, I'd give it some serious consideration before doing it. I remember it all too well and hated it like you do I'm sure. But in the end you're still going to be going through the full 48. If you can possibly handle it, it might be well worth your effort in the end. Just food for thought. What ever your choice, we're here to support you. I want you to have every chance possible! Good luck...

Tig

Paul B · Senior Member

Hey Mal

well it was an interesting discussion that was held between the gastro and nurse. I was a mere observer. Essentially the discussion was around blood tests and the ultrasound prior to commencing treatment.

The conclusion that the gastro came to was that he was not convinced that I am cirrhotic but somewhere around F3/4. He said that the blood results were not consistent with cirrhosis but were borderline and that the ultrasound showed no indication at all. (I know ultrasound is limited in this application).

The thought of stopping Boceprivir at week 36 is appealing to say the least. To be honest though, I reckon if I can get to week 36 I will be over the line anyway. I am pretty confident this time. In fact, I have a strong feeling I am already cured. Feelings don't count for much though I guess... Only time will tell.

mallani · Guru

Hi Paul,

I'd ask for some documentation to support stopping Boceprevir at 36 weeks.

With a Fibroscan score of 17, you are cirrhotic. This is supported by your consistent AST/ALT ratio of >1. There is nothing in the literature to support stopping Boceprevir at 36 weeks for cirrhotics, regardless of treatment response.

You are obviously highly Interferon sensitive, given your RVR. Your RCC and Hb suggest limited Ribavirin response.

It's tempting to drop Boceprevir, with the high pill burden and disgusting dysgeusia, but I wouldn't do it. Just my opinion.

Paul B · Senior Member

Thanks Tig. I wonder if the fact that I went UND before I even started the Victrelis informed that decision somehow. Anyhow, the next 16 weeks will be so much easier having that to look forward to.

Tig · Admin

Great news Paul! You're the first I've known to end the Victrelis at week 36 though. The only other individual here that did 48 weeks of Vic was Mallani and he also mentioned how difficult the pill burden was over that period of time. I finished mine after 24 weeks (28 total), so I have a clue of what you're going through. You're so right, cutting out 12 pills per day and the requirements that accompanied them was a great moment and did simplify things immensely! Hang in there buddy, you're doing great!

Tig

Paul B · Senior Member

Week 20 has come and gone. Blood results were similar to the last set, with ALT and AST still in the normal range ... a bit lower than last time in fact.

Saw the gastro for the first time since I started. He seemed pretty happy with my progress and the decision has been made that I will complete the full 48 weeks. The assumption is my PCR at week 24 will be good.

The big news is that I can go off Boceprivir at end of week 36. That will make a huge difference. The two main issues being dysgeusia and compliance.

Light at the end of the tunnel for the first time.

Paul B · Senior Member

Week 16 blood tests today. Hb - 131. Platelets - 98. Neutrophils .9. WCC - 2.5. RCC - 4.23.

ALT 49 & AST 52.

So I seem to be feeling a fair bit better at the moment. A few things went up and the only reading that went down was RCC. MAybe that is why I have been a bit pale looking.

And finally, for the last 3 weeks, no diarrhea. Something which had started to plague me before tx began and had persisted all the way through till now.

It's a dogfight but I am hanging in !!!

-- Edited by Paul B on Tuesday 30th of September 2014 07:25:11 AM

Tig · Admin

Hey Paul,

I've been where you are and I want you to know that it gets better. It's a difficult journey but it's something you can either struggle with or accept. When you decide to accept the road ahead, it gets less difficult to traverse. I took anti depressants because I had a horrid experience with interferon the first time. I noticed a big difference in my ability to tolerate life in general. Another difficulty with Victrelis (Boc) is the pill burden you have to deal with. It's one of the leading causes for non compliance. Whatever you have to do to stay on track is worthwhile. Once I committed myself to finishing the 28 weeks, come hell or high water, my mind was better able to get wrapped around the idea. I lost a lot of weight, even though I ate more than I typically did and that was because of the Victrelis requirements. Having to eat with each dose is also a bother, so try and find foods that both meet the need and taste good. Don't forget simplicity either! I ate a lot of bananas and things like oatmeal bars, cheese, peanut butter and jelly sandwiches, easy stuff. Watch the ingredients and try to establish healthy habits. But I admit that I didn't go overboard on the health food routine. Just do your best and be satisfied with it.

You'll have both good and bad moments throughout treatment, accept that. If your mood and ability to continue seem questionable, by all means discuss your options with your doctor. There are things that can be done. They are prepared for moments like this and can help in a number of ways. You've already seen some great headway with your lab results, that's a great sign of positive things ahead. If you're tired, take naps. I felt much better after I started taking regular naps during the day. If you're having trouble sleeping at night, the daily naps mitigate the need for sleep (at night). I also felt better by trying to keep active. I darn near painted my house! Felt like crap but I found that my energy increased by staying active. If it takes twice as long to do something, so what! Lastly, hydrate. The more I drank, the better I felt. I had terrible constipation during Tx. Hydrating more than usual helped that and reduced the headaches I was having. It's all a matter of finding what works and sticking to it. Hang in there Brother...

Tig

MzmiffY · Veteran Member

Hang in there Paul,

I can only hope that with time, feeling crappy becomes less of your normal.

The first few months were the most difficult for me. Just like you said, I too expected to feel much worse and for this I am grateful.

Emotionally I am in such a better place than when I first started.

Aside from the occasional agro, the outbursts have lost intensity. I now laugh about how ridiculous or irrational I am.

Look after yourself Paul,

Wishing you the best

xx

Paul B · Senior Member

MzmiffY wrote:
Hi Paul, just wondering how your feeling today and how treatment is going for you in general? Its interesting that while mainly subtle, the side effects seem to come and go relatively quickly, making way for a whole new set of fun to contend with.
I was elated when my ALT and AST returned to normal range.
Before tx my ALT was 302, AST 175. It's definitely encouraging to see them within normal range.
At the moment I feel really good. Tired but happy!
Wishing you the best,
xx

Feeling the same as every day... crap. It is just the type of crap that varies. Having said that, I am not complaining as I expected to feel a lot worse.
I know what you mean about feeling good about your levels normalising. It gives you something positive to hang onto.
Hope tx continues to go well for you.

Cheers
Paul

mallani · Guru

Hi Paul,

In many cirrhotics the AST and ALT are not indicative of the degree of inflammation. Cirrhosis is a 'disease within a disease' and the constant remodelling of regenerative nodules can lead to rapid cell turnover.

In my case, the levels did not normalise during treatment, but dropped. Starting AST/ALT was 118/142. At EOT, 82/81. At EOT +12w, 64/68. At EOT + 24w, 39/40. At EOT +48w, 36/37.

They don't worry me anymore. I'm sure I've still got a lot of activity in the liver, but it's not due to virus destroying more liver tissue. Cheers.

MzmiffY · Veteran Member

Hi Paul, just wondering how your feeling today and how treatment is going for you in general? Its interesting that while mainly subtle, the side effects seem to come and go relatively quickly, making way for a whole new set of fun to contend with.

I was elated when my ALT and AST returned to normal range.

Before tx my ALT was 302, AST 175. It's definitely encouraging to see them within normal range.

At the moment I feel really good. Tired but happy!

Wishing you the best,

xx

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