Hep C Discussion Forum

I've been meaning to post some more pics of my treks thru the pass down to the big city - if the attachment works these should be from my March 29 appointment.  C.

Way to go Canuck!

Glad to hear it ... perfect.

Very glad for ya

Dave

Okay, it's official. We are changing the way we refer to a non-detectable viral load result. From now on, instead of 'UND' we will be using 'ZERO'.

Way to go Canuck!!!

Yeah baby!!!! WOOT!! Congratz Canuck!

Hi Canuck,

I didn't  know anything about the Hep B stuff. Just thought it was something you'd already had yonks ago, not something you should still be worrying about now. 

So good to know that apart from the "will this really work" jitters, you are tolerating treatment well. Most of us feel the same I think, that this place is a haven of shared experiences where others are non judgemental and supportive. Can't even imagine where I would be now without it. As it is, I seem to be just adrift in week 17, coming out of riba fog but very sore and oh so tired of waiting rooms.

That hospital does me in every time. I start off as I drive there telling myself, I can be mindful, disassociate myself from immediate irritations (and terrors!) but each time the wait is that much longer, the news is - have another test, the fellow patrons are louder and dumber, until I'm just stretched past the bounderies of keeping myself nice. After a 90 minute wait for a blood test last Friday the nurse asked me to fill in a feed back form. I pushed on the pen so hard I ended up scratching down to the third form underneath. It's election year here too -  

Sorry I need to put my Pollyanna bonnet back on. 

Syd 

Hey thnzks everybody for good wishes and congrats, and support!! Really appreciate all you folk. Other than my med. team, and my partner, all you kind folk are the only people I can rely on and celebrate and share stufff with! So, your words and acts are MOST appreciated by me, AND my partner.

Syd, you (and all the rest of us funnies here) who banter in fun, keeping each other "up" ... I so enjoy it, right along with the clear blunt truths, and very cleverly presented, gentle, unobstrusive wisdoms that help shape anothers thinking. You and others have delightful amazing humours, and very special and sincere ways with words, I do not even mention the tremendous technical knowledge and the vast amount of experienced sage advice availlable here. So glad I found you lot. Notice, not once, anyone ever writing here ... "To whom it may concern"?

Without this kind of "out loud" thinking, info, sharing, feedback, I think most of us would remain to struggle to figure things out on our own. I glean so much from all of you directly and/or indirectly. 

BTW, syd, tkflex36, robertamx, I think I screwed up about 9 days ago and sent replies (private messages) to myself, and NOT to you?? Let me know if you did not receive my reply private email to any of you about 9 days ago. Computers - brother! 

Tig and SF, Ya, I was kinda proud of myslef too!! I did well with numbers lately, "0" in one bottle, line 236 done, AND my <15 status. Tig knows I love analogies!, so "wax and wane/mop and glow" fits me perfectly at the moment! You spurred me on tho SF (instilling tax completion and B PCR envy in me) to finally get my year end done. SF, you and I hold a special interest in people who believe that they, decades prior, simultaneously contracted and experienced both B and C (at the same time), don't we!

I am led to believe, by labs and doc-speak, to keep assuming my 1975 HBV was a "naturally spontaneously resolved/cleared B infection", judging only by my now (fast-forward to 2015) B neg surface antigen and my B pos core antibody testings - these 2 markers (neg surf. antigen and pos core antibody) should be my indicators that I DID successfully "clear" the past B, back in '75, and that my B is not "active" now. (Just real too bad I did not clear the C as well, back then in '75, in the exact same way!) 2015, I did show a "low" level of immunity memory to B, as evidenced by having a "too low" a B surface antibody level of 6.8 when tested (it is best if it is over 10) - thusly, why we  elected to address my too low immunity to B (and no immunity to A) by a "no harm no foul" /extra insurance policy of increasing my A/B immunity titres to acceptable levels by way of vaccination. We instituted immunization to both A and B, by 3 step inoculation, of which the final part three will be completed this month. My A and B immunity titres will be re-checked again about a month after the final immunization is completed. (Part way through my 3 part A/B immunization series, when my A/B titres were re-tested, I still had not yet gained immunity to A and my B immunity had increased to be greater than the >10 required, showing up at about 16 so far.)

Now, none of my labs, doc talk, or my most-likely non-exciting "resolved" B status scenario, addresses the really interesting paranoia-inducing studies I have read, where folk who have contracted B and C at the same time ... big bold C, easily competes, supercedes and wins out over B to be thee dominate infection, with B taking a back-seat (to be considered something like dormant, hidden, or occult) with the smallest of chances of the B re-activating when the C is finally eradicated one day! (This is just my very crude interpretation, but I hope I convey the concept here). That's one bit of fodder available for me to fret over. Then, to add more interest, there are those neat studies that show people who ARE actually active with B, but their standard antibody/antigen lab tests lie and indicate they are NOT active - these are the folk where only their B PCR will show their true B status. And then, lastly, on my B paranoia front, there is new mention of "other" kinds/varieties of B now being thought to exist, perhaps not identified by standard labs! 

Ya, I wish I could have a B PCR to cure some of my B paranoia, but it's looking like I will have to settle for repeated A/B titres showing immunity (in about 1 1/2 months, then another repeat B titre one year later), and be satisfied with a reasonable expectation that B will never be a problem for me. I still plan to ask for a B PCR tho, after my immunization is finished, and when they are schedualing me for my following A/B titres!

I'm going sleep-mode now . Thnakks again everybody ... "night John-Boy" ...  C.

Hey! I just had another good idea (I get these once in a while), why don't we all just meet up at Jimmy's place in Texas for a real big party!!, hmm, lesee, just lemme let me figure out what everyone's appropriate celebratory dates are for a minute here ... hee hee wheee!

There is a huge smile in Texas.

;)

Canuck,

Four weeks and your income taxes both ... Proud of you Yes, we do have some angels on our team. So how are you doing on this protocol. It seems you are tolerating it very well. I am only now starting to feel like I am drugged but 22 left to go so no problem.

Your numbers look good and I still do not have my AST nor will I get it repeated along with the other ones. It just seems that with my ALT in check the AST should be and same with Ferritin being good, would make one think my Iron saturation should be as well. That being said I do know this. The Iron that shows up in the blood is only part of the story because it does not indicate what my body has already absorbed.

Can't they do a surface antigen on your B? That would give you a good grasp if B was an issue. I will try and get my B VL in another few days. I will call public health myself since they were really great last time.

Please keep us posted. I keep reading here but not posting a whole lots these days. I am sort of slugging along at this point but not complaining.

SF

Signature Line update : March 10, 2016 - accepted for and started DAY ONE of 8 week SOF/VEL/GS-9857 trial.

March 10 labs taken just before starting treatment - VL 844,000, ALT 86, AST 64,  (my VL in last 6 months, before treatment, decreased from being over 10 millions to under 1 million!)

Other pre-treatment labs: IL28B - CC. Ferritin 541 (ref. 15-300), Iron 37 (ref.9-32), Iron Sat. Index .71 (ref.15-.45).  PT 13.6 (ref. 9.7-12.3 sec), INR 1.3 (ref.0.8-1.2). C&G Crt&clr 58.6 (ref.75-115.0). Glucose 107 (70-100). Urine ph 5.0.  

March 18 labs - WEEK ONE - VL 247, ALT 29, AST 23, C&G Crt&clr 60, Glucose 94, Urine ph 6.

March 29 labs - WEEK TWO - VL <15 detected, ALT 20, AST 23, C&G Crt&clr 58.7, Glucose 115, Urine ph 6.3

Whew! (panting sounds). Needed a big catch-up rest. It seems to be just a whirlwind of important numbers swirling around my life here lately, between <15 detected and line 236 on my income tax form - (which I am happily fatigued to report to you as recently completed!) - I now have a reprieve from doing "math" for a while! Except, maybe ... to just keep on counting my lucky stars!

So, finaaaaaly, my taxes are done (akin to pulling teeth), and I STILL don't "get it", but the accountant is now happy. My WEEK 2 <15 detected VL number made ME very happy.

I am at WEEK 4 (one empty bottle, IS DONE! ). I grinned proudly, when I handed over the two bottles to my nurse. One full, the other empty. The empty one, it's content which I had consumed in it's entirety (day by day as directed), no longer rattled - pleasing silent testament to NEVER being needed again! After we got through the standard down-a-qt. lab work, paperwork, the always appreciated "free lunch"and the fun obligatory confirmation that this senior citizen was STILL not pregnant, they opened bottle number 2 for me, to witness my pill swallowing prowess again during my appointment! I went home happy, singing some vaguely confusing blend between my "velpa war cry national anthem chant musak", and "one bottle of beer on the wall, one bottle of beer ..." chiming in! (No ... I don't drink, it just happened to be one of the few celebratory songs that came to mind!)

Doc, nurses and I, all shared grins at one another from time to time at this appointment, especially when I could not restrain myself and showed my unbridled vibrating glee of how my ALT and VL have so stupendously crashed, even though (being human) I still harbor a healthy balance of fear verging on paranoia (just force of habit, that I hope will soon wear off). So ... doc is still forced to present clever ways to re-focus me on only the realities ... his simple "NO's" are quite effective to quench my building negative on-fire fantasy outcomes - a succinct, but canny man - he sees where my mental "bonfires" go and which need to get "put out". I present the concern, he drenches it. "Hmm, but what about my iron and my ecg's", I say, "my kidney function, my HBV, what if (what if, what if!) I just languish at <15 detected at 8 weeks, you're suuure I just couldn't just be rolled over into Polaris 4"???? I am sure he does a lot of internal steeling, sighing, deep breaths and then systematically provides definitive short answers (simple enough for my scattered logic to grasp on to) - he drowns my errant thinking with a few well-placed "dousing" keys words, to be left imbedded in my useful consciousness - like, when he has to re-iterate the stats ... uh, "97%", and, "there IS a plan B", etc. Who knew, that "perspective" was required, when you have been floundering around in panic mode for too long! He must know, too well, that people, when faced with new hope and imminent success, that that in itself, can be a scary new thing, and, some folk will still try to protect themselves by continuing to prepare themselves for failure.  I should be more like my dog was - in the moment!

Small lab blips interest me ... like my Alk. Phos. which had always consistently shown itself to be maintained at around 86 (which IS within normal limits anyway), and I just assumed it would always remain about 86, as per history. But, it dropped (once only) to be at 66 during WEEK 1! It was back up to it's usual level at WEEK 2. To see drops/fluctuations in ALT's, AST's, Bil and other values, one could and would expect, but I did not even really think about my Alk. Phos. during treatment, nor expect to see my Alk. Phos. fluctuate downward for this one week period! Prolly just a minor/mute/one-off nothing thing to note, but I find these things interesting, especially if I have not done enough thinking/reading about them. Aside from ALT's and AST's, etc., I wonder, after cures, what with improving function in all inter-related systems, whether some people's Alk. Phos.'s levels might also decrease?

Oh I am starting to get so excited and hopeful to see more and more changes to the good to come! It IS such a reward to see the ALT (and the AST) drop, of course, not just the VL's. Improvements to physical symptoms are harder to discern as yet, but I think some may have started? Maybe fatigue is improving? I so look forward to all and any improvements. Psychologically I am feeling in such a better place, less stressed, safer, so relieved, calmer, hopeful. So grateful I got to this trial.

I do wonder if I may already be undetected! The nice nurses told me to phone them in a couple weeks and they will let me know the result of the WEEK 4 VL that was drawn on Apr 7 - that way I do not have to wait until my next appoint. on May 5 to find out! So thankful they offered to do that! (SF and I do have angels on our teams.) I'll keep ya'll posted.  C.

NICE ... very nice numbers Canuck! That's where mine were at 4 wks so the drug combo you're on is extremely effective, WOW!

Very glad to hear the great news,

Dave

That's an incredible two week reduction! 10+ million to <15? Wow! Get rested and fill us in, we'll be ready to share some more of your good news. Very pleased with your great report!

Excellent, Canuck, congrats on such a huge drop in viral load...and after just 2 weeks!!!! 

Looking forward to seeing a big fat UND when you get your next results!! 

Thanks for sharing your good news.. now get some well deserved sleep!!    

Hiya Canuck,

Wishin' ya well ... keep us posted on how your days are goin', loved the Easter post ... beautiful country there

Take Care

Dave

Hi Canuck,

so happy to hear your amazing results. Down to the 200's in just one week!! 

And check out those bloods. Loved your recount of the day and the note you chose to end it on. 

Now just let me remember next time that you're posting here.... Shouldn't be all that hard because iTHINK this is where you started.... But who knows....

Just hoping you go through this treatment without side effects.

Syd

Most Excellent News Canuck!

Thanks for taking us on your journey, SO beautiful along the way and waiting in anticipation with you ... lol

Incredible drop in VL, and by now it's nil ... you are finally on your way to SVR, Wonderful, wonderful ...

Loved the bit about Polaris, I glance at it often on Summer nights, the Lullaby the fact that RC is on the Trial by the same name ... I nearly felt the crisp cold air there

Thank You Canuck,

Dave

Wow, what a fantastic result, Canuck, congratulations on such a huge drop in viral load, and so fast!  These drugs are super charged! 

Enjoyed your story, you really have a way with words!  Great photos too, keep them coming! 

You must be so thrilled, because we certainly are!! 

So excited for you.  Excellent results.   RC and I taking our trip to the coast for final

tests before he starts on the Polaris trial. ( THE STAR PLAN!).  Great story too. Thanks! CC

Congrats Canuck!

Those new drugs are amazingly fast acting and you responded very quickly. There isn't a thing to be unhappy about with those results! Your viral load dropped incredibly fast in a single week. I have no doubt that you're undetected by now. Just think about all those little suckers imploding and making their way into a watery grave every time you use the loo! A fitting final resting place for them.

I enjoyed your short story of the journey! There must be an author in our midst 

ALL GOOD news!

Left for the coast on Monday, it was another beautiful sunny day to drive over the pass. Moteled it Monday night for my WEEK 2 appointment with the doc in the big city on Tuesday. Got back very late Tuesday night, after an equally beautiful night drive, guided home by my lucky North star Polaris. This appointment was for the WEEK 2 lab draws ... BUT, with much anticipation, I KNEW my WEEK ONE lab results (PCR) would be there, waiting for me!

It was another long appointment at the docs office, much of it unavoidably comprised of waiting. It IS a very busy place! A long day - even tho there was no ecg or questionaires to be done this trip. I have learned to ask for a copy of whatever labs I am allowed to have, at my earliest opportunity during the appointment. This usually happens during the "second tier of waiting", which generally occurs, not in the waiting room, but within the sanctum of an inner exam room, segregated from the masses, having labs in hand gives one something to do, whilst so interred, continuing to wait for your turn to see the doc, I use the time to POUR over the lab results, and formulate questions. My pretty diminutive efficient nurse dutifully entertains and occupies me with her "in and out" of the exam room chores. She is wearing the sweetest small smile when she turns and says to me, "do you remember what we spoke of, about pregnancy prevention last time you were here?" Quite a few humorous practiced responses came to mind, but no, I am enjoying her sweet smile, and smile right back at her and simply say, "oh yes"! We go over (verbally) my sides/symptoms, this always sends me into a fugue state of date/event brain fog, then I get a break when she leaves the room to count my pills. I snag her before her back disappears down the hall, to ask for my WEEK ONE labs. Shortly, she reappears with my lab copies. She's off again to count pills. She returns, politely prompting me that if I could stop talking long enough she would like me to take one of the now-counted pills she has brought back, so she can document and witness the event. Then she's off again! 

This appointment I had been dreaming/salivating/worrying, anxiously awaiting having these particular lab results put in my hot little hands to read, as I KNEW my end of WEEK ONE PCR would be in there!! I nearly tripped over myself trying to snatch the lab papers from her hands when she appeared with them, left to my own devices again, in my quiet little room, heart pounding, my hands and eyes furiously flitting back and forth, pages flipping back and forth, nope ... really?, not there? ... not on the back, scan/check again, calm/deliberate this time .... nope, NOT THERE!!!! NO PCR RESULT. Arrrgh! Doc finally comes in! Heart still pounding, after cursory polite social verbalizations, I inadvertently quickly cut him off,  blurting out, "WHERE's the PCR - I'm dying here!!" - "Oh, hm", he says, "just a minute ... now, where has she gone"? Now he leaves again! (No, pleeeease don't leeeaave I am screaming inside my head .... while I dejectedly watch his back disappear down the hall.  So's, I wait. She returns! (looking for him) ... she says "Now, where IS he?". I (helpful-like) inform her - I say ... (hoping to expidite this perfect storm of flitting intercoursing humanity in and out of this interminable tiny exam room cell), "I think he's looking for you?, and, oh, I think he's looking for the PCR report??!!" She leaves. So's, I wait. Check the lab papers again, nope, I am not imaging it - there IS no PCR in there. So's, I wait. Fiiiinally, he comes back, and says, "Now, where is she ...?". (No, no, no, I'm screaming inside my head, please don't don't leave again)! Thank god, she arrives just then at the door, she slips in, slips him papers, door shuts, NOW we can begin, they thumb through the labs, "Oh, that's a very good result, the ALT in ONE WEEK!" he says to me.  (Yes, yes, I read that one! ... PCR!, PCR!, what's the PCR! I'm screaming inside my head!!). He says, well ... and then gives me the number. 

My brain, now hopelessly fogged/ fatigued/stressed, is quickly trying to falter over the VL number that he has just given me - trying to dredge up the mathematical equation (which of course is escaping me) that I had managed to figure out once before (based on an old school rule-of-thumb) that an initial "ten-fold drop" is a "good" response and should please you. Lessee, was that ten-fold from logs or was that from IU's - oh, no, mm, lessee, my NEWest pre-trial VL was less than one million, so now at 237,000, (how many logs is that) so either way a ten-fold drop, that would now make it ... oh this is hopeless! ... I'm gonna have ask him to the math for me .... he must be wondering why I am sitting there in brief hesitation with a perplexed puzzled look on my face ...  I start to ask him for the math help ...- "You said 237,000, so ...". " No", he says "I said  237"... I say "you mean ... 237, not 237,000"? Yes, 237 he says. Not 237,000 I say. Yes, 237 he says. It finally sinks in, brain particles whirling like those rolling symbols on a slot machine rushing to the point where they finally stop and solidify on one line, HEY! - NO MATH REQUIRED HERE!, this was followed by what must have looked like a series of weird facial, eye, mouth movements, and some gesturing (on my part), I finally hear some shell-shocked words coming out of me, disorganized, not intelligable, but I guess telling. Strangely positioned phrases started stammering out of me, like ... Oh. Well. My. etc., Hey my AST was down too. Well. I should have known if my ALT was down, fades out to nothing. Thankyou. Well. Oh. My. My bilirubin went up a bit, oh I'm so happy (contradictory tears are being bitten back at the same time I am claiming I am so happy), more facial grimacing, slots still running a bit, ooooohh I'm sooooo releived I say, duh!, 237, in one week eh, I repeat for him!, huh, well, how 'bout that, in one week eh, oh, well, man, layers of relief here ... on and on this disjointed garbled babbling continues, he sits back in his chair (he never does this, I think he resigned to seeing this is going to take a few minutes), he say,"take a moment to enjoy this", huh what?, I am reeeling, flooded with suppressed tears of stressful relief and harboured grief that I have been either been anticipating or packing for many months, that he and Gilead have just shatteringly sliced through with this one mere "number" in one fell swoop. I continue babbling, I hear words like thankful, a short history of how I found him, I try to utter things like I'm grateful, none of it coming out of me in the right order. Finally - thank god - he intervenes, and does the talking for a bit while I am still flailing about in this very new strange barrage of complicated ever-solidifying second by second bouncing around of thoughts and feelings at this new-found VL state of profound relief. Like when the beating is finally over?

He, looking very pleased for me, nicely repeating that it is his pleasure, (his one arm busy packing my chart, his other hand busy holding a pencil), stands and is heading out the door now, on to the next patient. Me, still sitting in my chair in dumbstruck happy stupour, but in expressive desperation, grapples on to his dangling hand as he passes, I am squeezing his hand firmly (the one holding the pencil), not with just my one hand now, but my other hand also has to join in the party to imprison the writing implement firmly within his unsuspecting pencil grasping hand, shaking and pumping away my thanks in what I hoped would be a better a non-verbal action. I let go so he can disappear down the hallway and I call out after him ... I think I love you ... and Gilead! Geez, I hope he has seen these reactions before. 

Signature Line update : March 10, 2016 - accepted for and started DAY ONE of 8 week SOF/VEL/GS-9857 trial.

March 10 labs taken just before starting treatment - VL 844,000, ALT 86, AST 64,  (my VL in last 6 months, before treatment, decreased from being over 10 millions to under 1 million!)

Other pre-treatment labs: IL28B - CC. Ferritin 541 (ref. 15-300), Iron 37 (ref.9-32), Iron Sat. Index .71 (ref.15-.45).  PT 13.6 (ref. 9.7-12.3 sec), INR 1.3 (ref.0.8-1.2). C&G Crt&clr 58.6 (ref.75-115.0). Glucose 107 (70-100). Urine ph 5.0.  

March 18 labs - WEEK ONE - VL 247, ALT 29, AST 23, C&G Crt&clr 60, Glucose 94, Urine ph 6

On my long drive home last night after a long day of beautiful sunshine, the night sky looked just like this ... and it put me to mind of a conversation RC  (robertamx) and I had, where he had pointed out the importance of Polaris. Indeed Robert!

Polaris - the North Star - the brightest shining light - the one which guides us home.

(Tried to post some pics here, but don't think it worked!)

Lullaby - By Jane and Ann Taylor - written  1806

Twinkle, twinkle, little star,
How I wonder what you are!
Up above the world so high,
Like a diamond in the sky.

When the blazing sun is gone,
When he nothing shines upon,
Then you show your little light,
Twinkle, twinkle, all the night.

Then the traveller in the dark
Thanks you for your tiny sparks;
He could not see which way to go,
If you did not twinkle so.

In the dark blue sky you keep,
And often through my curtains peep,
For you never shut your eye
'Till the sun is in the sky.

As your bright and tiny spark
Lights the traveller in the dark,
Though I know not what you are,
Twinkle, twinkle, little star.

This soothing little ditty could have been written just for us. For us, those lucky enough to catch the tail end of a velpa comet as it speeds by, casting it's magic star dust spell on us.  C. 

Beautiful here you go brother.

gorgeous pics, thanks Canuck. 

I never kid about being compuetr illiterit!

Thanks. Looks like its wrking?  C.oks le it's wrking, I think? C

Had to reduce the size a little Canuck! Beautiful stuff!  Tig

Trying to post some pics (of my last trip down to the big city to see the doc) going through the mountain pass, from March 17. I can't figure out how to make the dang things stick here! I'll keep trying, but don't hold your breath. A picture's worth a thousand words, so, if they don't show ... be prepared for my 1000 word description of the snow.  I'll be on the road again tomorrow, for my 2 week blood draw. See ya later.   C. 

JimmyK wrote:

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This is your lucky day. I believe I have just the one you are looking for. Just to confirm, you last name is Carrera right?

 

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 That`s near enough.  As long as it comes with a full money back guarantee, of course...