Hep C Discussion Forum

Way to go Pablito! That dragon is history now and 3 months time will prove it. Job well done!!!

Hey Pablo!

Outstanding news, congratulations my friend! I was just reading an article on GT4 success rates on 12 and 16 week treatments being so high. Now you come along with the willingness to pioneer an 8 week protocol and look what you've proven, it works! You're paving the way to reduce treatment time and costs to half in some cases. These are the trials that will help prove effective treatment opportunities to twice as many people, at half the cost. You have earned your merit badge Pablo, good job! EOT = UND  Time to change your signature line!

That's great news Pablito. We are all in this together, so when one of us gets this GREAT news  it's good for all of us.  Thank you for sharing your  journey with us.   I can't get this big grin off my face, man you made my day!!   EOT UND.  IT DOSENT GET ANY BETTER! RC

Boom. Undetected EOT 8 weeks of wonder drug Sof/vel/vox!

Got the results via an email so I'm trying now to establish whether this is totally UND, or UND <15 with an indeterminable amount of viral RNA present.  

Either way great news.  

Pablo 

Noted Jimmy re antibiotics.  In fact, now that I remember when I had root canal before on the other side of my mouth that's what the dentist did.

Thanks Robert.  Yes, I had a few nerve wobbles in the early weeks of treatment.

DO NOT DO A ROOT CANAL WITH AN ACTIVE INFECTION.

Get some Antibiotics, kill the infection and THEN let them dig.

JimmyK

Hi you dragon slayers, you have passed the finish line, that is sooo exciting, and in retrospect must have gone pretty fast! Sorry to hear about the infections, they sound pretty painful. I hope they resolve that issue soon.

I look forward to reading both your UND, so you can be added to the Dragon Slayer hall of fame. Hopefully every person that visits here can have that honour sooner than later. :D

This has been an enjoyable read. Two people I care about are in fact doing better.

None of us got into the condition we have found ourselves overnight nor shall those conditions that we are now concerned about suddenly disappear.

What is cool however is to follow how closely each of us looks into that which ails us. It seems like just yesterday when all was thrown to the wind and reckless disregard was shown in the pursuit of things now considered so foolish. At least wise as far as my walk has been I can say without hesitation I am quite fortunate to be this side of the Daisy.

How very true the words,"For what is your life? It is even a vapor, that appears for a little time, and then vanish away."

Indeed life is beautiful and it is a privilege to travel with y'all.

JimmyK

I'd be extra sure of their intentions with the extra bottle first thing in the morning.

If it is indeed an extra then congrats on EOT Pablo. You've done a good job as an HCV warrior and I hope to see you do well as an HCV victor from this point forward. "Onwards and upwards!" for sure!!!

Honesty is always the best policy, but dang, that's probably a minimum of $35,000 USD! Whew! As smoothly as it's gone, too bad they don't draw your labs and then let you finish the last one! I know it would skew the 8 week trial results, but still. I hadn't ever heard of them providing a back up bottle, just in case. That was pretty forward thinking, but they also could've just mailed you or gave you any make up pills at your check ins. I'm sure the cost of that bottle coming from Gilead's research division costs them about  $10 USD! There's probably a clause in your contract that says you have to pay for it if it isn't returned. That shouldn't be necessary anyway, now you can prepare for SVR instead of EOT. One down, one to go....

Congrats on EOT Pablo! Job well done ... another dragon dead and gone from this realm. Yay!

Happy for ya!!

Dave

What a great few posts:

Relieved to know Canuck is not pregnant.

Awesome news about Pablo

And Tig said dragon azz and stool hehe. (Watched way too much Beavis and Butthead)

HUGZ,

wendy 

SF,

That was on the 31st, it's entirely possible today is it. Pablo?? Are you hiding something? Have you reached the Station today? Can you add those three letters to your signature, EOT? I believe it's close enough to say, CONGRATULATIONS!!! You made it Brother!

Time for a little update and then a trip down to the Dragon Azz Pub for a shot of success! The first stool is yours!!

HI EVERYBODY,

So sorry I have not been able to post much lately, so many new people coming on to the site that I would love to start up conversations with, but I have been spreading myself a little too thin lately.

I regularly dip in and read about you all (old friends and new folk) and then have to wisk away again.

I will get caught up one of these days, I hope!

Pablo - you are finishing your last pill of the 8 week sof/vel/vox trial on Sunday, Jun 5? Yay! And I finished my last pill (of the same trial) before you on May 5.

My trusty partner (driver, walking time-piece/calendar, speller, math/fact checker, and back-up memory bank) and I left for our long drive down to the big city to see the hep doc on Thurs. Jun 2, for my 4 week post-EOT appointment, on Fri. June 3. We always stay over at a motel.

Got back home late Friday night.

I'll let y'all know what my 4 week post-EOT VL and labs are, as soon as I get them back (this coming week I hope), but, we can all predict what they are going to be - can't we!!

Oh, I almost forgot to update you on the 5, or is that 6, pregnancy tests Gilead has done on me now so far!!, I know you will all be very relieved to know with assurance, that this long-ago post-menopausal senior citizen who has only been on hormone replacement therapy for about the last decade, and who has been practicing only the most secure and severe form of 100% proven method of birth control/contraception ever known to man for quite some time now, has succeeded in not yet conceiving by immaculate conception.

Since EOT, I have not been feeling 100% - (little things) cold/flu/allergies/coughing/wheezing, and as well (starting before I finished my trial) a crop of rotating ear canal pustuales, some of which got large and painful!! I'd get one ear cleared up with antibiotic drops and another one starts! Very inconvenient, and bad timing! Drat it all! It's raining on my parade. The local docs in my small town have been seeing me for my ears and a forehead thing. (On my Jun 3 appoint. the hep doc did give me a puffer to try, and referred me to a ENT guy, and,oh BTW, I only have about 1 1/2 veins for bloodletting, I know what Wendy means when she give the phlebotomist the eye and states emphatically "butterfly"! With 1 and a 1/2 veins, I am lucky if they can try 3 times. I came out a pincushion Jun 3, but lucky in the end, I was starting to wonder if I would have to do a Jimmy and get it drawn from my leg! - Pablo and skimily - I at least consoled byself well for my pincushion condition by eating the delicious huge )

A couple weeks ago (to add to my small bag of complaints) I also got a glorified pimple on my forehead, which (oh thanks) turned into a nice stubborn abscess, which painfully grew (double thanks) to which a week of oral keflex I tried was too late, and was never going to work, until it had to to be cut open and drained last week! Just damned unlucky it seems!! Just when i am trying to discern how much better I "might" be feeling (post-treatment), I am being plagued with all these little things, which in turn, camouflage how much better I might be!

Despite these small ill-timed irksome maladies, and through the last 4 weeks since EOT, I HAVE(slowly) been able to discern ... possibly ... an increase in strength, less fatigue, and my brain fog has at least returned to pre-treatment levels, if not possibly improving a bit from pre-treatment levels!

While I was on treatment I DO think my brain fog got thicker. I noticed, in the very first several days to 1 week after EOT, that the "extra" layer of the drug-hangover feeling I was experiencing while on the meds (which contributed to my fog), left!! That was very nice! And it also feels good to feel a bit stronger, and, I am no longer so subject to those profound overwhelming irresistible naps that used to overtake me which occurred pre-treatment despite how much sleep i got!!

On my previous May 5 appointment (my EOT appointment) my poor doc asked "Uh, WHY am I doing this"? (I had presented him with a shopping bag/wish-list of extra lab work I pined for - things I knew Gilead would not be ordering). I replied,"Because ... it would make me feel better?, because .... they are things I would like to follow?, because ... I would find it reassuring, just like I feel when my other tests return and show "UND, NORMAL or IMPROVED from before"?, because .... my past TIBC's, iron load and lipids were high before?, because ... I have a fatty hard liver?, because ... it would help me feel more comfortable with my paranoia about my history of having a case of spontaneously resolved HEP B back in the 70"s when I first contracted the HCV then as well?, because ... at the very least I want to know if my lab work shows that after all my "extra" insurance of my recent double dosed HEP A/B immunization, that my immunization antibody titres are indeed showing up as "technically immune" to A/B by way of immunization?".

He kindly starts ticking boxes on the lab req, mulling it over, carefully gauging what tests were warranted and justifiable, what was logically acceptable to look at again, and, what would placate me. He refused imaging/ultrasound/fibroscan (I will ask again later for the U/S, fibroscan), he also refused the HBV PCR to rule out dormant/occult HBV as that likelihood (as I already knew) is remote. (SF will relate to me pining for B and iron info).

So, the results from my shopping bag/wishlist of extra tests:

Testing (for the outcome of my 6 month series of A/B immunizations) resulted in: an A test showing I have now recently achieved immunity to A, and an immunity antibody titre of 17 to B (B immunity has to be over 10). Prior to immunization I had no immunity to A, and my B antibody titre was too low (below 10) at 6/7.

Altho, not very high, I really did prefer to see my pre-trail AFP of 10, go down to (post-treatment) 4! (normal limit is 0 to 8).

My lipid panel is still not right, but not too bad - chol. for instance: was at 6 pre-treatment, and is 6.33 post-treatment (normal should be less than 5.20). But I think some of the other lipid parameters look improved - I'll have to confirm this with the doc.

Pre-trial my ferritin levels ran at 462, 443, 541 no matter what I tried to do myself to lower it (normal is between 15-300), I am happy now (post-treatment) that my ferritin level showed a decrease to be within normal limits at 191!!

Pre-trial my T.S. (iron saturation index) that was always too high at .47, .81, .55, .71 (normal is .15-.45), post-treatment it's down to within normal limits at .39.

Pre-trial my serum iron ran up to 42, 37 (normal is 9-32), post-trial it is now 22.

So, I am glad to have some concrete, objective lab tests to feel good about, and will wait patiently to discern and clarify further the more elusive subjective physical improvements.

I am so looking forward to my next UND and Alt! C.

Thanks Jill.  Yes, time has flown.

And, yes, I more relaxed about the results.  I have some understandable anxiety but it's small and well contained.

5 days to go!

Hi Pablito,  Your geting closer to the end of treatment, way to go. Its a love/hate relationship with the meds. Your liver will be so much better now.Im looking forward to the trial results from this trial.RC

And so it shall be Pablo..... I have a window into the future

Pablo, 

Had feelings like that too (excitement/worry/dread, big and small celebrations along the way). It was an odd celebration when I finally got that bottle #1 empty!! Then the countdown, to the last few pills of the final bottle #2 was also exciting. Each day, of my last 3 pills, I would look over and show my partner a great big silly grin, and rattle that bottle, until there were none! The silence of that bottle was lovely. I would, along with my big grin, say things, just-like- that .... I reaaly, reallly, reeeeaaaaly hope this works!! Already knowing, all along, that I had EVERY indication that it HAD already worked!! Mind is a funny thing (at least mine is), that's fer sure! Your UND will make your mind feel better. I was not so lucky as to be able to physically feel it (yet), that would have been nice, I had to be satisfied with a lovely crashing ALTS and VL drops, until I got the "technical" soothing UND.

I loved Tigs analogy to me about being on a short 8 second rodeo ride - my only job was just to hang on, and not get bucked off. Easy!

I told him (in ref. to my short course) - a little dab should do me!

In no time, you will see the results you are needing! Just hang on to the horn.  C.

As of today I have only 12 tablets left of sof/vel/GS-9857...or sof/vel/vox, as it is now called.

Where does the time go?  I feel great, so clean inside my body.  Looking back, I only had some fatigue and hot flushes for the first few days and then a strange gastro thing at week 4 (that may have been unrelated)...other than that it's been plain sailing.

As you all know I retain some anxiety around the week 4 VL coming back at 269, but I'm managing this worry well.

I really, really, really want this to work because I feel so great and, looking back, I realise that I was minimising the effects HCV was having on me for nearly 20 years (deliberately so, actually, as a coping mechanism).

Pablo

Congrats on the new family member Syd.  Saskia is a beautiful name.

Hey,

I DID NOT make syd cry!!! Nor did I ruin Harvoni dreamland! I am innocent of all charges. 

syd, DON"T try any kind of "sweeping" (like your daughter) ya,ya, I know, it may sound like a good idea, does get things "moving" (but ask her, she knows a sweep is not the most pleasant experience). No spring cleaning for you!

EVERYBODY ... take a nap, right now! Starting with newest girl, Mommy, GRANNY, 1 yr old, and eldest born. Lights out!

No one in their right mind should be pulling the 3AM to 11 shift.

Waaay too many female hormones gone a-wild over there in Australia.

After you have had a nap syd, I will explain how to remove those toothpicks from your eyes that are painfully propping them open, hmmm, reminds me of a couple movies I've seen ... seen that one where Mel Gibson is mind-controlled, by aid of eye propping and drugs in "Conspiracy Theory"? Or, perhaps it was Anthony Hopkins face mask in "Silence of the Lambs", or, more like the behavioural modification that went on in "A Clockwork Orange"?

Sweet, an 8 pound prize for you all. Congrats to the Mommies.

Wendy, loan your killer "black talking dog clip" to Pablo please?

Rest up everybody. C.

(although you look way better than this grandma)

CONGRATS lady!

(although exciting hope can be scary and has to be weirdly balanced out with the oxymoron safety of fear and dread)

Canuck

I am sitting here bawling my eyes out. I have tried to verbalise that fear of hope thing which you have nailed so succinctly my whole life. Ever thought of taking up a writing career in the neuroses area?? Seriously you are marvellous at it. 

Now, I can see how an outsider might see I'm making some progress but am still much too scared to allow myself a peep at it. And I can't imagine life now with out popping HCC fear in my handbag wherever I go. It's pathetic, but at least you've put me in a headlock and propped open my eyes so I'm forced to see it. 

On a much lighter note, Saskia was born at 10.00 am this morning. She weighs 8Lbs and mother and baby are well. I am so relieved. Spent the day with the other two. Michael 1, put on a brave boysie face and didn't cry for her at all. Alannah spent the day picking her flowers, making hearts out of play dough for her and drawing her pictures. By dinner time she broke a bit and just said I miss my mum. I wish it was possible to protect these precious little beings from all that life seems to heave into the path of most of us.

I went round there at 3 am when I got the phone call,so to be still here at 11.04 hovering around my "no place like home", I must have a truck load more energy than I had six months ago. 

Pablito, man, I'm glad the left side of my brain must look like a very small piece of over boiled cabbage if the torture you're capable of inflicting on yourself is what you get for having a high functioning one. Don't go there with the stats.

Syd