Four week triple therapy report

[DougV]

Just finished four weeks triple therapy with Incivek/ifn/riba.  Just had blood taken for labs, will take about 10 days for results of VL.

It has not been without issues.  A common, and I expect way under reported, side effect is anorectal discomfort, also know as nuclear butt burn and hemerroids.  Both started about day 5.  Still some issue butt vastly improved.  (I am going to be brutally honest so if there is a nasty gross side effect I'll say it.). Normal things, prep h, spritz bath, etc don't seem to be of help.  This is however supposed to stop after you stop Incivek at 12 weeks.

There was also a rash, second week.  Systemic rash, very minor but everywhere.  No itch though and hardly visible.  So minute it was almost invisible and best seen when light hit skin at angle.  Benedryl took care of it and it vanished after 3-4 days.  I should add this was not necessarily very smart on my part.  As it was systemic rather than localized probably should have let doc know, but there was possibility he might want me to discontinue and that isn't going to happen.

I am having labs done weekly.  Simple CBC weekly to monitor hemoglobin, platelets and WBC.  In past, hemoglobin falls at rate of 1.0 weekly and never stops.  Procrit does not help unless I do 80,000 weekly and reduce riba.  I am not reducing riba this time so hemotologist said let's just skip doing expensive black labeled drugs.  Plan this time is full steam ahead on drugs, no reduction, no EPO, and packed RBC infusions second hemoglobin hits 8.0. 

Be interesting to see what is going to happen to platelets.  In past they would fall as low as 80,000 and stabilize.  But in the past they were much higher when starting.  Over 200,000 second time, over 400,000 first time.  But liver ain't what it was then and start this time 121,000 which is already below normal.  Bright side probably won't be throwing a clot any time soon and most likely I'll never need heparin or rat poison, I mean Coumadin. 

I have not checked on labs at all.  I have three doctors they go to, I am not reducing drugs, so I figure what's it matter.  First two times I obsessed over labs, this time, not going to stress over anything at all.  Whatever happens is going to happen whether I watch values or not.

Currently I can tell hemoglobin is falling but body is compensating nicely so no issue at all.  In fact I feel really pretty good.

First three weeks I eas finishing an EMT class, required several 12 hour clinical rotations, and three days of five hour classes.  Had A when I started treatment and ended with A treatment be danged.  Took a Pediatric Advanced Life Support Class and breezed through it as well.  Next month I start last semester of nursing school, well last before RN, plan on getting Masters and get NP so RN just step one.  Here again I will do 12 hour clinical rotations.  Also plan on helping with Advanced Cardiac Life Support competitive tournament at end of August.  They'll have 15 of best teams in the state competing.   Alas I will be one of the dying patients instead of on one of the teams but I expect to learn a lot. (I am certified in ACLS and advanced airway management but no where near good enough to compete against folks that have been doing this 25+ years.  Yet.)

Went Busch Gardens with 2 yr old grandtwins, taken the to zoo by myself several times.  Am currenly pressure washing pool deck, screen cage, fence and house.

Bottom line this is not stopping me or slowing me down as of yet.

Biggest complaint I have is the dang timing of taking Incivek with fatty food.  It sounds minor, 20g fat in meal when taking Incivek.  Catch is you take it 3 times a day 7-9 hours apart.  For me that meams getting up 5:30am, a time I never eat, and chocking down unhealthy food.  My normal lunch is noon, but to keep calories down I hold off until 1-2pm so I can take Incivek with lunch.  Then about ten, another time I don't eat, more fat, last pill.  Makes it really hard to watch weight.  According to nurse w/speciality pharmacy said this is by far he number one complaint.  It gets really old really fast.

I have some anti-depressants but have felt no need to take them.  Oh got nauseated once, but only once and as I get nauseated occassionally cannot really say it was tx related.  And had couple times in first couple of weeks I'd feel a bit light headed, but it too has passed and was never serious.

To sum up 1st four weeks.  Minor but not dehabilitating issues.  Able to work, school, play at will.  Feel really good for the most part.

I am taking some supplements which I did not do before.  Not getting sun like I used to (not tx related but had face lasered and trying to look less aged, accordingly Vitamin D.  Learned from past experience to take potassium and magnesium without fail and that has eliminated nasty leg cramps I get drinking all this dang water.  Finally added a B complex that has no minerals and is particularly high in folic acid and B12 injections, 2000iu, sq, twice weekly.  Hoping these help with hemoglobin levels but started B12 months ago due to fatigue, again unrelated to treatment.  Too soon to know if it helps with blood but fatigue pretty well gone, was getting to where studying was tough as I was exausted by 6pm.  Now, well it is almost 1am and I'm sitting here typing away.

That is it so far.  Sorry for the length, but wanted to make sure I didn't skip anything.

This treatment is, for me, no worse than before.

Doug

[MissyMouse]

This is really interesting and really exciting.  Thank for the report.

Mouse

[willy]

Well, first I hope that the 4 week PCR is UND.  My recollection is that you were a responder in the past, and so I am kind of expecting a good result.  After that it is just weathering the 7-8 more weeks of incivek.

Everybody seems to get a great lift when they are UND @ week 4 and 12.  After that it's still 12 more weeks for naives and relpasers..... but where do you fit into the mix?  My understanding was that you were a responder, but did not finish TX due to anemia.

I'm glad that you have a hemo this time.

Great to hear about your results and observations and all the other things you are doing.  Seems like you have a pretty full dance card.

willy

[DougV]

I am relapser Willy.  Both times had >4 log drop by week 12 and was undetectable by week 16.  First time did full 48 weeks, second time 39 weeks due to non-response to Procrit and need for 3 units packed RBC every three weeks.  But even though riba was reduced from starting load of 1600mg down to 600mg I stayed und after week 16.

First time 80,000iu Procrit weekly eventually started turning anemia around a bit, so the combo of thst allowed me to do the full duration.  2nd time no go on Procrit, did nothing, and considering both risk and relatively poor chance of success we pulled the plug.

That is why hematologist.  My GI is just that.  He isn't that comfortable with EPO and infusions, just not his thing.  This time that 85% success rate is my holy grail.  I'll persue that if it kills me, literally.  When I met with my hematologist I was blunt, almost to point of being rude, about what I wanted.  And that was when I fell in love.  First she is pretty attractive and even better she told me what I wanted to hear.  Regardless of number and frequency of infusions, hgb  floor will be 8.0.  I can function at that level and insurance protocols will allow for that.  No Procrit, not worth black label risks, extremely high cost, and it will not allow me to continue full strength dosing, strictly infusions at whatever needed to maintain that floor.  May get interesting, first time 17 units packed RBC over course, second time, dunno lost count around 24 units I think.  Eventually might start getting dicey in terms of matching but that isn't a major issue. 

It is 24 weeks or bust.  If no und at week 4, most likely I will pull plug for same reason as before, chance of success at that point no longer are worth the risk of what I will probably need to do to get through.

And that Willy was the long way of saying I am considered two time relapser.

Doug

[Helen]

Hey Doug,

 Sounds like your not doing to bad. I hope it stays that way. Im glad you started this thread I will definately be looking for it weekly.

 Keeping my fingers crossed for you. 

 Helen

[DougV]

Helen,

I am doing a heck of a lot better than not bad.  Honestly I feel great.  Met my lab partner today to go over skills, spent four hours doing that and she and I then had lunch (With my wife's knowledge and consent I should add).  After that ran home spent three hours outside in pool mainly taking care of the grandtwins while wife got her hair cut, tomorrow the zoo with them.

I know hard times are a coming, but right now I am feeling fantastic and enjoying life.

Doug 19 weeks to go or bust.....

[RiverRandy]

Doug

Go for you, sounds like everything is going alright .  That is all we can hope for and keeping busy to try to keep those bad thoughts out of our crazy minds...lol.  Good Luck again and keep us posted.

[MissyMouse]

Doug, that is just awesome!

Mouse

[Helen]

Sheesh Doug,

 Your doing better than me. 

 

[willy]

And that Willy was the long way of saying I am considered two time relapser.

Doug

In which case (I'm sure that you know, but not all others who read this know) that you are in a group with the highest chances of SVR; Relapsers.  Not even treatment naives have as good a chance as you. 

I wasn't sure that you had ever even completed a TX, and so I didn't know if you could be considered a relapser; maybe a responder.  In which case you have made it through the first 4 weeks w/o a reduction and are almost certainly clear.

By the way...... one of my other friends who was in the area of your liver damage was one of the first TX failures to treat w/ Telaprevir in Prove 3.  He did 24 weeks of triple therapy followed by 24 weeks of SOC.  That was 3 years ago and he reports that a fibroscan shows him at a 2/3 liver damage now.  Not totally conclusive but he feels (and some labs seem to indicate) improvement.

Yes, it is exciting reading about what may be your final impending success.  (LOL; in skool and in TX)

willy

[DougV]

Willy,

We shall see next week what the deal is, but considering minute chance of success last time I confess I like the sound of an 85% shot.

I will be curious, if SVR of course, what happens to my liver.  Some, if not a lot, of the damage is permanent, but I'd be tickled if damage was simply stopped, any improvement is simply a huge bonus.

Doug

[Al]

Hang in there Doug. I'm following your journey and wishing you the best~

Al

[rayc2001]

This is really interesting and really exciting.  Thank for the report.

Mouse

[rayc2001]

Hi Doug,

Don't know if you remember me.  I remember you when I was here a few years back.  OMG my close friends have heard me explain these last 7 days or so of rectal (hell) that I thought was going to drive me bananas!!!  Baby wipes. Oh, they are the best invention since tp.  All kidding aside, as soon as I started using the baby wipes, life became bearable again.  I started the incivek and peg inteferon and ribavarin on July 12th, and had my 2 week labs today.  I can almost say I wrote what you did.  I haven't had the side effects I suffered the first time around with the inf/riba but I did get on xanax prior to treatment, the lowest dose.  Life hasn't seemed half as bad as that first go round.  Best of luck Doug, I will be following you as we are days apart. 

[rayc2001]

Oh, and our eating schedules are very similiar.  I can't stand all the fat!!!  The doctor says pig out after telling you to stay as thin as possible.  How the heck do you eat 20 grams of fat at 11:00 at night right before bed???  4 scoops of ice cream and chocalate saucce or a fettucini alfredo from stouffers!!!!