Hep C Discussion Forum

Tig · Admin

RE: started treatment

Scruffy · Guru

Great Job Perry!!!

No doubt you will get good news on the 15th. (toasts you with a glass of OJ)

perry · Veteran Member

Last Riba pills taken and in half an hour EOT will be here with the last injection. To celebrate last day what did I do??? Yes you guessed it - went out for 2 runs today and covered a marathon - 26 miles. Will see how the old body copes with tomorrow morns run!!!!! EOT Bloods to be done Monday but wont have results till 15th. From here its onwards and upwards - letting the body recover of course but will slowly up the mileage bit by bit as the body allows. Was getting to be a long 24 weeks towards the end but made it. Take care all - as said before you are all legends. Will keep in touch -

Cinnamon Girl · Guru

Hi Perry!

So brilliant that you`re almost at the finishing line, well done!!

I agree with Tig, I have no idea how you`ve managed to keep on running, and you seem to have taken it in your stride! I know how hard it must have been though, it`s not an easy treatment to get through.

It`s a pleasure to see your positive attitude holding strong and I wish you all the best of luck with your results.

Keep us posted! smile

Tig · Admin

Hi Perry,

One more week? What a journey you've taken. I'm glad we have all been able to follow your progress. How you have been able to keep up the pace (literally) is beyond me. I was just talking with one of our new members that shares your desire for long distance running. I told her to give you a shout.

Let us know about the new test results and by all means, please check in on your last day of treatment. If you're on the road running, send up a flare and we'll do a happy dance in your honor!! Good luck mate...

mallani · Guru

Hope you had a good ANZAC Day Perry.

Counting down with you. Best of luck mate.

perry · Veteran Member

Hi all - just a quick update!!!! I am officially counting down the days now - 7 to go and 1 more dart. Not an easy regime of meds this one ( int/Riba ) but one I've managed to cope with. Boy I take my hat off to all that did 48 weeks of this stuff - youre legends. I wont say this has been easy but I went into it saying - I will treat each day as per normal as possible but expected the side's - so that and the exercise has helped big time. Even managed about 27 miles today over 2 runs so got to be happy - tomorrow will tell though!!!! Got blood tst next week to check iron levels - they were a bit high before starting and Monday week will go in for EOT viral test plus LFT and CBc - then the recovery process will start . Take care all - youre all legends - and remember it is only one foot in front of the other and we have to keep smiling.

Tig · Admin

Hi Perry,

Thanks for the update. You're so close to finishing that you could slide under a doorway. We used to call that being "short" (close) to our discharge date in the military. So short we could walk under the door!! You have tolerated treatment admirably, I bow at the alter of Perry, ha!

ALT is a more specific indicator of liver inflammation than AST, that's likely why they just did the one (I guess). They usually include them both, along with several others in a complete liver profile. Your doctor had some specifics in mind, I would trust his choices. Your ALT is excellent, so nothing to worry about there. Everything is looking good, platelets are down but still hanging in there.

Keep up the great job and let us know when you hear your next update. Good luck Perry, keep on truckin....

perry · Veteran Member

Hi all - just got last blood results over phone - Hb up slightly to 104 , Platelets down a bit to 79 - rest were much the same. They also did liver fn this time - alt now at 26. For some reason didn't do ast but great to see alt down that low. Also nurse told me that once I finished the injections ( 4 to go with next tomorrow night) not to worry about taking the last week of Riba pills - think I will go with that. Keep on trucking everyone.

Gator Man · Senior Member

Hi Perry,

As I am just getting back into training, your running while on treatment serves as an inspiration. My long runs are around 10K, not 30k+, and I'm pretty tired at the end. You're amazing!

Best of luck on your downhills in tx and on the road!

john

Tig · Admin

Hey Perry,

Good to know that you're on the last leg of the journey. I'm with Jill, at week 20 I was a mess and couldn't have run half a kilometer! Your stamina says a lot about your pre treatment conditioning. I remain very impressed.

Best of luck on the upcoming tests. Please let us know your results and watch out for the hills!

Tig

Cinnamon Girl · Guru

Well done, Perry, you`re getting near to the finishing line now!!

You really are amazing, by week 20 I could barely move from the sofa!

Let us know when you get your next results. Keep on trucking! smile

perry · Veteran Member

Hi all. Just had dart 20 yday and next week I pick up the last 4 week pack of meds - yes I'm allowing myself to start counting down now. Go in for bloods again next week so hoping everything is much the same - time will tell. Have still managed to keep up my regime of running with some walking and planning for hopefully next years mission is coming along. Hills aren't my friend whilst running at the mo - shortness of breath, heavy legs but not to bad on flat and I can let myself cruise down hill. Certainly know when I try a bit of speed ( for me!!!) I tire after about 2 km. Funny thing is after about 10-15 km I warm up and running becomes easier. Keep looking after yourselves and keep that 1 foot in front of the other.

Tig · Admin

Hi Perry,

120 miles.......per week? How do you do it? I was in a coma by this stage of treatment! Hgb is still holding up but your platelets are getting lower, but still hanging in there. You're doing very well considering what you're going through. Keep it up, I'm in awe! But you might consider cutting it down to 60 miles per week if your legs get any heavier! Good luck buddy.

Tig

mallani · Guru

Hi Perry,

Keep trucking mate. You're doing great. Cheers.

perry · Veteran Member

Hi all. Still putting that 1 foot in front of the other!!!! End of week 17 and dart no 18 tomorrow evening - not that I,m counting!!!!!! Got last blood results today - much of a muchness - Hb up a fraction to 102, Platelets down a fraction more to 85 and most others down a fraction. Legs did feel a bit heavier this past week but have still managed to squeeze in 120 odd miles per week for last 3 weeks ( still a bit of walking but its all going forward!!!!). Its just a case of keeping on keeping on without getting into the counting mode. Take care all and hope most things are going okay.

Cinnamon Girl · Guru

You might have mentioned reaching shot no.15, Perry, but I think it`s definitely worth repeating!! biggrin

Being so fit at the start of treatment has been a huge advantage to you and I`m sure you`re right about how it will help you going forward. If you can do this, there`s not much you can`t do...you`re unstoppable!

perry · Veteran Member

Thanks - yes its 1 foot in front of the other some days but I know its helping big time - actually managed 31 kms this morn - some slow but some reasionably good - and I know I will be back much stronger both mentally and physically. Did I say 9 darts to go!!!!!

Cinnamon Girl · Guru

Hi Perry,

Thanks for sharing your latest lab results, it all looks about what we`d expect to see at this point. The riba is clearly taking its toll on your Hb level which is a good indication of how well the treatment is working, although how you`re managing to keep running is beyond me!

You certainly have some determination and that must be a great help in getting you through.

Keep hold of that positive attitude, it`s great to see...very good going!

Tig · Admin

Hey Perry,

Thanks for the numbers! You're definitely experiencing some anticipated anemia. Your Hgb is starting to get down to a level when you start to notice a big difference, particularly with the lower platelet count. When I was at that stage, the only thing I wanted to do was kick the foot out on my easy chair and sleep! You continue to amaze me mate! Keep it up!

Tig

perry · Veteran Member

Hi Tig. Out of interest you asked to see my latest bloods - interesting the Hb has dropped a bit again which as I said probably explains the bit of xtra tiredness the last few days. Will def be 1 foot in front of the other this weekend!!!!

perry · Veteran Member

last blood results got today;

RBC 3.1
HB 100
PCV .32
MCV 103
MCH 33
Red Cell Width 14.3
Platelet Count 89
WBC 2.4
neutrophils 1.4
Lymphocytes 0.7
Monocytes 0.3

Probably explains a bit more tiredness this week with running!!!!!!

Take care all - no 15 dart tomorrow - no I'm not counting!!!!!!

Tig · Admin

Perry,

If you're going to make it to Jacksonville, you have to consider the run through the Keys. I'm 3 hours from Key Largo, 6 hours to Key West. You'll have some fans cheering you on from Southwest Florida! We'd love to have you!

Tig

perry · Veteran Member

Hi Tig. Not saying its been easy mate but I'm sure it has helped one hell of a lot. However I do read the body pretty well - hence if I have to stop and walk a bit then so be it - its still going forward. And yes there will be a book at some stage - life and running and the hurdles we have to cross; how to keep positive!!!! The run I would love to get off the ground for next year is back in the states - LA to SF ( 8 days), SF to NY (45 days), NY to Jacksonville to Dallas to Phoenix, maybe San Diego and the back to LA - 110 days all up. Bit of work to do and a lot of money to raise but I'm pretty determined.

Tig · Admin

Perry,

Honest to God, I don't know how you're able to do it. It has to be your physical and mental will to do what you do. I'm sitting here with my mouth open and brain whirling, trying to understand how it's possible with the anemia you must be experiencing. I honestly think you should write a book on your ability to fight through the adversity you have faced on and off the road. It would be quite a read! All I can say is well done mate, you are a special person with an incredible desire to succeed at what you set your mind to. But please, I have to say it again, don't overdo it. The anemia does affect your muscle and ability to transport oxygen to them. You have a lot of living to do yet, don't damage anything now!

Please do me a favor. Will you remember to share the results of your upcoming blood work? I want to see what you're dealing with and still be able to perform at such a high level. Once you beat this disease, I believe you're going to feel reborn. You should find the return of strength and stamina you didn't know existed. When you decide to run the state of Florida, I'll be here to meet you! Keep it up Perry, you're an amazingly driven individual that has taught me a lot about commitment. Good luck buddy!

Tig

perry · Veteran Member

Well dart no 14 done and dusted!!!! 10 to go - not that I'm counting. Been fairly uneventful the last couple of weeks as in nothing out of the ordinary or nothing that I would expect. Yes Tig have uped the mileage slightly ( sprinting for the finish) and this last week have managed about 115 miles - even a slow and awkward 36 kms yday which I must admit the body did feel a bit!!!! Bounced back today with 17 kms this morn ( always do a bit of walking the morning after dart night) and then 14 kms this arvo which felt a bit better. Have next blood counts this coming week so will be interesting to see if the Hb has come back up a bit more. Still having fun out there though and I will win the battle. Keep looking after yourselves and yes it is only 1 foot in front of the other.

Tig · Admin

Hey Perry,

YAY!! Good job on your undetected VL! It's a great day to get that report, I remember it well. Keep up the positive routine and know that we're rooting for you! Half way is a great accomplishment considering the protocol. You're on the downhill side and you can start coasting. But knowing you, you'll kick it up a notch and sprint for the finish, lol! I hope you know that we are thoroughly impressed by your dedication to both treatment and your passion for running. You're an amazing individual! Good luck mate...

Tig

mallani · Guru

Hi Perry,

Great news about the Undetected.

Must be strange to be on Peg/Riba among all the new DAA's here, but it's working. Keep truckin' mate.

Rubye · Senior Member

Wow Perry! --that word UNDETECTED is the best. You really are an inspiration to me in the way you keep on with the running and simply persevere while on Interferon. Congrats!

perry · Veteran Member

Hi all - coming up to dart no 12 on Sat - halfway mark - and the good news is -----just got the Vl test results back and UNDETECTED - also the Hb levels have gone up slightly to 107. Now to finish the course and keep that undet word there. This running and exercise must be helping!!!!!!! Take care all and keep on taking that 1 step in front of the other.

perry · Veteran Member

Hi all. End of week 9!!!!!! Been a bit tired this week - mind you the 33 km I did on Monday wouldn't have helped!!! Got last blood results back over the phone on Thursd ( yday) and they are much the same - The Hb has dropped 1 to 105 and the nurse did say that if it got below 100 they would drop 1 tablet per day. Still keeping up the same regime - walk for about 8 kms first thing in the morning and find this really helps to get the tiredness and fogginess cleared quite a bit and then do another 15 or so km ( mainly running) later in the morn. I do a couple of hours cleaning in the afternoon as well. Will get the Vl results back in a couple of weeks which will be close to the halfway mark. Getting there slowly but surely - 1 foot in front of the other. Take care all.

Tig · Admin

Hi Perry,

I remain impressed with your ability to keep that kind of training regimen up. I think you're so accustomed to the process that your brain (and motivation) just won't allow you to not get out on the road and run! Just don't let your numbers drop too low before considering all the possibilities. Regardless of physical conditioning, your muscle and bone need oxygen to function and you don't want to cause injury. Here's a good reference of the CBC values. I hope it helps you understand your numbers better.

http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/9109/

Tig

dragonfly · Senior Member

Wow you can run! I couldn't walk far without getting a cab. You're doing well. I don't understand the figures either but I know my ALT has gone down to 30 which I am told is good. In the UK they are more concerned with bilirubin levels which affect your transplant urgency. Your results look good to me so keep on running! Nxxx

Cinnamon Girl · Guru

Hi Perry, your levels are a bit on the low side but that`s about what we`d expect with Peg/Riba treatment. Good to see your HB has come up a little, but how you can continue running with that level beats me!!

You`re obviously coping well with the tx anyway and I`m glad to hear your appetite has improved. Being able to eat well and having a nutritious diet during tx helps a lot.

You`re doing well, nothing to worry about there..just keep going!

perry · Veteran Member

Hi all - just got a copy of bloods - not tech enough to scan in so here are results;
Liver Fn; ALT and AST as said.
Total protein - 64

rest in range

Complete Blood Count; RBC - 3.2
Hb - 106 ( was 100 last one and original 158
PCV - 0.33
MCV - 101
MCH - 33
Red Cell Width - 15.2
Platelet Count - 122
WBC - 2.8
Neutrophils - 1.5
Lymphocytes - 0.9
Monocytes - 0.3

Not sure what half of them mean but good to see the Hb come up a bit. Noticed thye other thing at the moment is the appetite has certainly gone up which is probably a good thing. Also am having the VL test in 2 weeks which will be at almost 10 weeks - should be interesting.

Ro · Senior Member

Sounding good! It is so great that you continue to run...motivates others wink

wising you all the best!

Ro

Groupergetter · Guru

Perry, glad to see your labs improving. You are a true inspiration. smile Keepa go.

mallani · Guru

Hi Perry,

Good news on the AST/ALT results. I'm glad you're getting a VL at last. NZ isn't that backward!

Truck on mate, I'm impressed you're able to run on Peg/Riba. Cheers.

Matt Chris · Guru

Hey Perry

Wow! your doing great, with all your activities it shows how a great desire to maintain things you enjoy can still be attained.

I am cheering you on like your in a 42 Km marathon.

matt

Tig · Admin

Hey Perry,

Congratulations on your improving ALT/AST levels! That's definitely a good indication that treatment is working. I must say I remember being at your stage of treatment and didn't have anywhere near your strength and/or stamina. Whatever you're doing, keep it up! I'm impressed Brother!! I'm glad you're getting some help and advice from your nurse on your testing, it sure helps to have someone working with you. I believe you'll be pleased to see how well these medications attack your viral load! It's always good to see proof of it written down! Keep up the good work and good luck on your training regimen, you sure have my admiration.

Tig

Cinnamon Girl · Guru

Hi again, Perry, good to hear things are going well for you!

Your liver enzymes are looking great and that`s a good sign that the treatment is working well. Nice to know your Hb level has increased too.

Best of luck with the VL test, I`m glad your nurse is requesting to have one done. Seems like you`re responding well but it`s good to know for sure.

I have to admire your stamina and determination, even Hep C treatment can`t hold you down!

Keep us updated! smile

perry · Veteran Member

Hi all. Well into week 7 of treatment and things seem to have settled a bit - am actually able to run a bit more although still taking it easy ( for me !!!! ). Have actually been able to do about 140 kms in the last week ( stiil mainly a walk first thing to clear the head and then run later ). Have just got latest blood results ( over the phone ) and ALT is now 32 and AST is 42 - nice to see those ones come down. Also the Hb apparently has come up a bit from last test. The nurse is going to send me out copies of them and I also questioned her on VL test. Apparently it is more about costs but she is going to put one on the blood form for my next bloods in 2 - 3 weeks. Almost a third of the way through. Planning on my next mission is coming along as well for 2016 - a double across the states all going well - the things we do for fun!!!!! Take care all - now to organise getting the teeth sorted.

Cinnamon Girl · Guru

Hi Perry, I`m very surprised you haven`t had a VL test scheduled for week 4, that`s standard with the Peg/Riba treatment which I believe you`re doing. I would check what they`re planning to do when you speak to your nurse, and definitely ask for a 12 wk test anyway. It`s important to monitor your progress and see how well you`re responding to the tx, and being Gen 3 shouldn`t make any difference to that.

I really admire the way you`re keeping up your exercise regime, but do allow yourself to slow down a bit if you need to!

Best of luck, let us know how it goes.

perry · Veteran Member

Thanks Tig and mallani. I'm pretty sure they said with the G 3 that they wouldn't be doing one till end of treatment. Will phone them tomorrow and ask for blood results as well as question them on vl test - 24 weeks seems a long time without knowing. Yes with what little teeth I have left will contact the dentist and see what he says. At the moment Tig it is just 1 foot in front of the other - walk in the morn which helps gets things going and then a run/walk later - seems strange from running 94 odd kms per day for 52 days to now struggling to run further than a km without having to walk to get the breath back.

mallani · Guru

Hi Perry,

See if you can get your blood results, especially Hb.

As Tig said, make sure you get your teeth looked at. Interferon has a direct effect on tooth enamel, and the dry, acidic saliva and decreased WBC's allow caries to go beserk.

I would insist on a VL test at 12 weeks at least. The protocol calls for a 4 week and 12 week VL. If undetected at week 4, you have an RVR and your chances of SVR go up enormously. Cheers.

Tig · Admin

Hi Perry,

As your Hgb drops, the oxygen carrying ability of your blood diminishes, thus leaving your legs and the rest of your body feeling tired and worn out. It's one of the hardest SFX to get accustomed to, if that's even possible. By the end of treatment I didn't want to even get out of my chair to go to bed. I was a mess, physically and mentally. But my recommendation is to do your best and try to ignore it and put one foot in front of the other, and repeat!! Good luck with that!

I'm very surprised about your doctors failure to schedule you for a 4 week viral load, then at 8 and/or 12 weeks to determine your response to treatment. Typically if you aren't undetectable by week 12, they may stop treatment. I would insist on a week 4 and 12 at a minimum and one every 6-8 weeks thereafter (Minimum). Did they tell you they were going to wait until the end of treatment? That's just wrong IMO.

I recommend you have a dental visit if possible. Interferon is well known to cause dental problems, secondary to the oral dryness and its effect on the bone. Many of us had dental issues during Tx. I lost a tooth among other problems. My teeth seemed to hurt a lot during Tx too. Mallani had some problems too, several broken teeth if memory serves me. The dentists are schooled in this so it shouldn't present any problems. But you do want to let them know. They may want to see your latest blood tests before doing anything like an extraction. I had to do that to satisfy my oral surgeon.

Hope that answers your questions. If I missed anything or you have any other questions, just let us know. Good luck Perry!

Tig

perry · Veteran Member

Hi all - yes its been a case of listening to body more in the last week - nurse phoned yday and said the blood levels ( red) had dropped a bit but not enough to dropp meds - explains a bit why the legs felt like concrete espec when doing hills ( less oxygen to the muscles?). So its just keep on trucking. Question - is it usual to not do a VL test during treatment? Also are there any probs with getting dental treatment during treatment - will have to explain to the dentist re HEp c as he wont be aware?

Matt Chris · Guru

Hey Perry

Sounds like your trucking through the treatment. Keep up the good pace but listen to your body.

matt

mallani · Guru

Hi perry,

It will be interesting to see your Hb, as the Riba takes a while to kick in. I'm impressed you're sticking with the exercise. Don't overdo it.

Cheers.

-- Edited by mallani on Saturday 13th of December 2014 07:08:01 AM

perry · Veteran Member

Beginning weel 4 and about to have dart 4!!!. This week has been a bit crappier!!! - sure had touch of virus going around early in week which didn't help and energy levels have been down a bit - still running/walking though. Went out for my " normal" sat run this morn and breathing and energy was also down so ended up with more than normal walking ( still did the 27 kms ). Going in for next lot of blood tests ( CBC ) on Mopnday so should be interesting to see results Tues. Sure there is a bit of " brain fog " going on as well. Life goes on but still managing to look at planning next adventures for 8 plus months down the track. take care all.

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