Hep C Discussion Forum

robertsamx · Guru

RE: Starting treatment tomorrow 2-4-14

Isiscat2011 · Guru

robertsamx wrote:
I have never had my alt or ast under 100 in the last 30 years, and now to see my ast at 35 WOW !!
and my alt at 49, both in the normal range.. And my fibro scan went from 37 to 22 in 16 weeks. Now I wait two weeks for the 4 week post treatment results. I'm feeling good about all of this. Will keep everyone posted . RC

Amazing! This is what we love to see happen. Very happy for you Robert. smile

hippiechick · Member

So happy for you!! (and I like your car!)

robertsamx wrote:
Baseline hg 15.0 pl 144 alt 290 ast 130 br 0.6 lipase 769 amylase 241 log 6.75 v/load 5,666,000
week 1 hg 14.1 pl 178 alt 118 ast 56 br 0.9 lipase 76 amylase 76 log 3.17 v/load 1,490 after 11 sofosbuvir and 60 riba
week 2 hg 13.6 pl 153 alt 63 ast 35 br .7 lipase 87 amylase 66 log n/a v/load 601
week 4 hg 14.8 pl195 alt 52 ast n/a br1.4 lipase 72 amylase 76 log 2.14 v/load 139
week 8 hg 13.4 pl 158 alt 60 ast 66 br .08 lipase 78 amylase 57 log 1.43 v/load 27
week12 hg13.3 pl 163 alt 58 ast 81 br .07 lipase 43 amylase 43 log 1.18 v/load und
week16 hg 14.1 pl 151 alt 49 ast 35 br .06 lipase100 amylase 75 log 1.18 v/load und
Went in today for my 4 week EOT blood draw and got the last results I posted above. I have never had my alt or ast under 100 in the last 30 years, and now to see my ast at 35 WOW !!
and my alt at 49, both in the normal range.. And my fibro scan went from 37 to 22 in 16 weeks. Now I wait two weeks for the 4 week post treatment results. I'm feeling good about all of this. Will keep everyone posted . RC

OldenSlow · Senior Member

You have every reason to feel good about it, RC. Looking forward to hearing those results when they come in. Let us know. wink

wayne

robertsamx · Guru

Baseline hg 15.0 pl 144 alt 290 ast 130 br 0.6 lipase 769 amylase 241 log 6.75 v/load 5,666,000

week 1 hg 14.1 pl 178 alt 118 ast 56 br 0.9 lipase 76 amylase 76 log 3.17 v/load 1,490 after 11 sofosbuvir and 60 riba

week 2 hg 13.6 pl 153 alt 63 ast 35 br .7 lipase 87 amylase 66 log n/a v/load 601

week 4 hg 14.8 pl195 alt 52 ast n/a br1.4 lipase 72 amylase 76 log 2.14 v/load 139

week 8 hg 13.4 pl 158 alt 60 ast 66 br .08 lipase 78 amylase 57 log 1.43 v/load 27

week12 hg13.3 pl 163 alt 58 ast 81 br .07 lipase 43 amylase 43 log 1.18 v/load und

week16 hg 14.1 pl 151 alt 49 ast 35 br .06 lipase100 amylase 75 log 1.18 v/load und

Went in today for my 4 week EOT blood draw and got the last results I posted above. I have never had my alt or ast under 100 in the last 30 years, and now to see my ast at 35 WOW !!

and my alt at 49, both in the normal range.. And my fibro scan went from 37 to 22 in 16 weeks. Now I wait two weeks for the 4 week post treatment results. I'm feeling good about all of this. Will keep everyone posted . RC

lauralou57 · Senior Member

Congs Robert!

Gator Man · Senior Member

Outstanding Robert on all fronts! I had a pre-treatment biopsy for my baseline I'm not sure what my doctor has planned for follow-ups assuming I am SVR in a couple of weeks, but hope I have some fibrosis resolution down the road. Your post treatment Fibroscan results give us all hope that we might see some regression in the future. We all need to keep up with Malcolm!

-- Edited by Gator Man on Tuesday 3rd of June 2014 02:06:33 PM

Isiscat2011 · Guru

Congrats, Robert, on EOT and also the remarkable fibroscan drop. Way to go!

robertsamx · Guru

Thanks everybody. Fibro drop is a good thing, still high but falling, I just relized after reading this thread that the drop could be a early indiocator of good thing to come. hopefully my mind and spelling will some how tage along as well RC

Matt Chris · Guru

Hey Robert

Congrats on making it to EOT, the Fibroscan is reading is encouraging.

Keep on truckin Robert and stay happy and healthy

matt

mallani · Guru

Hi Taz,

A MELD (Model for End-stage Liver Disease) score is completely different. It is calculated using a patient's serum bilirubin, creatinine and the INR. The score is used in assessment for liver transplantation, and whether portal hypertension should be treated. Hopefully you won't need to know your MELD scare.

The Fibroscan score is an Ultrasound measure of the 'stiffness' of the liver. This usually equates to fibrosis. Fatty liver and acute inflammation can give falsely high readings, but a fairly accurate assessment of liver fibrosis can be obtained. It is very reliable in cirrhosis where the score will be above 15 kPa, or in patients with minimal damage, when the score will be below 5-6. SVR for cirrhotics can lead to a drop in the score, which indicates some resolution of the fibrosis. A drop in the score makes us cirrhotics feel good! Cheers.

TazKat · Senior Member

mallani, would a fibro scan score be like a meld score? there are so many things still & problay will never understand completely..

TazKat · Senior Member

yay for you!! I do get excited when I hear of these great results. gives me hope that I only have 6 shots left. wowzer.. I just can't wait.... but got to.. lol

mallani · Guru

Hi Robert,

That's a good drop in Fibroscan score. My doc made me wait a year after EOT, and I went from 30 to 8.8 .In another year I hope to drop even lower. Cheers.

jimbob · Senior Member

Congratulations Robert ! Are you still reaching for your meds?

See ya on the flip-side soon.

Best wishes.

jimbob

Groupergetter · Guru

Congratulations Robert, for us undetected is one of the best words we could hear. Look forward to seeing und in your future. They don't do the fibro scan where I'm being treated. Guess the MRI with contrast is coming in the future. Wish there was another test they could run, I don't like the idea of having contrast agent used. I may have had a reaction to it last it time. Good luck, be well.

Tig · Admin

Hey RC,

WOOT!! Great news buddy, the best there is! I'm equally baffled by your FS reduction. Still high but a reduction is a reduction, I like the direction that number is taking. Keep it up Brother and I'll see you over in post treatment. You've graduated, and now we need to design a diploma for your great day!

Tig

robertsamx · Guru

I will stop posting here, and Im moving over to post treatment... After 16 weeks my treatment is over..UND, my fibro scan went from a 37 to 21. The Dr. did the fibro scan 22 times in the same area as my first scan 4.5 months ago just to be sure of the test results. she told me not to expect much of a decline in the fibro scan results, and she could not belive the results. See you all in post treatment RC

jimbob · Senior Member

Hi Robert.
Taking those last meds is sure a sweet sound to me. I'm sure it is to you. I certainly hope that you have made it out. I have a good feeling about it also and believe you've had a very good combo. Best wishes and good luck partner.

Tig · Admin

Hey Robert,

Congrats Brother! I remember when you started... I feel only good things in your future, good luck!

Tig

"one way or another..."

robertsamx · Guru

This friday morning is my last dose of Sofosbuvir/Riba. Then Im heading over to the study hospital for my week 16 blood draw. I went UND around week 7-8. My last draw was still UND. My study nurse says that a good indicator will be UND at the 4 week post treatment. The next 4-5 weeks will be a nail biter for sure. RC

Matt Chris · Guru

Hey RC

Super congrats on acheiving UND, this is a day that you will learn to cherish.

Enjoy the days ahead you will feel great.

matt

Tig · Admin

Hey Robert,

WOOT!!!! Good news for sure Brother. Don't worry about the delay in your UND, some just take some extra time to get there. The good news is you're there and as Wayne said you've got several more weeks of the "Good" stuff. You've got every reason to be thrilled! Keep it up and continued good luck....

Tig

OldenSlow · Senior Member

That's great to hear, RC. About time you had some good news. That will give you, what... about 5 or 6 weeks of further treatment after the UND? Keep it rolling, my friend.

wayne

robertsamx · Guru

UND UND UND week 8 hg 13.4 pl 158 alt 60 ast 66 br .08 lipase 78 amylase 57 log 1.43 v/load 27

Im not happy with the latest results, most on this study go UND at 3 to 5 weeks. If you don"t go <15 at week 8 on this study you must go in for a re draw and if your not <15 they pull you off the study. Im going in this friday 4-18-14 for the blood draw,and by that time I will have had two more weeks of the study drugs and hopefully it will be enough more

I got the call on my 4-18 14 re test for my V/L On good friday i went back to trial hospital and had my V/L re tested and I"m U.N.D. It 's good news for sure. RC

-- Edited by robertsamx on Thursday 1st of May 2014 03:36:16 AM

robertsamx · Guru

I spoke to my S/N and Dr. By rescue they said that the parent study company will enroll me into a study in the next few months , using sofosbuvir in combo with other new drugs coming out. the Dr said that most on my study go UND very early into study, and a late bloomer usually dose not go UND or RELAPSES. So on friday 4-18-14 my blood draw will hav 14 more days on treatment than the last one that was at VL 27. I have a good chance at UND. I know in the end that if i am a non responder on sofos/riba that the next combo will do it. The fight is on now, I"m a fighter, love a challange and always get my way. Thanks everyone for all your words of wisdome. will report my v-l end of next week RC

Cinnamon Girl · Guru

I`m thinking that by `rescue program` your nurse was talking about what she could offer if you`re not undetected next time, is that what she meant, Robert? And maybe she was thinking about then putting you on the 24 weeks arm, as Wayne suggested, as a back up plan.

It seems to me though that you still stand a very good chance of getting that Und result on your next results, so let`s wait and see.

I agree with Tig, you`re gonna get that pesky virus, one way or another! Hang on in there! smile

Tig · Admin

Hi RC,

Did she mention anything about your hemoglobin? Like everyone else, I can't see a thing that would warrant a rescue scenario at all. Sometimes the nurses start mentioning intervention anytime they see the Hgb start moving south. But yours actually rose at week 4 before dropping back down at week 8. Typically they don't even start talking about rescue drugs or dose reductions until the Hgb drops below 10. How much Riba on you on? I see your nurse mentioned once about a dose reduction, so if I'm allowed to "guess" it could be that. I agree with Jill though, don't be terribly impatient and try to not beat yourself up too much just because your numbers aren't behaving like someone else's. The best way to deal with this treatment is one day at a time. Treat yourself as best as possible, diet, attitude, outlook and planning. When you do your level best and follow everything by the letter, then you've done your part. If it works, be thrilled, if it doesn't, be satisfied that you did your best. You're going to do this, one way or another, but you will be successful. Never give up on that goal. There is nothing in the plan book that said this would be easy and you knew that going in. So tell the Dragon who's boss and to get it's affairs in order, because it's on it's way out, one way or another!! (Let that be your motto) Hang in there Bro, you've got plenty of fight left in ya. That I'm certain of...

Tig

robertsamx · Guru

Thanks Wayne,Thanks Cinnamon girl. I knocked me over but im standing up again, I"m fighting and I will get this done. I will know more in 11 days. RC

OldenSlow · Senior Member

Hi RC,

A rescue program in the middle of a trial? That's interesting. Wonder if she was talking about the possibility of moving you over to the 24 week arm? Hope you get more details and let us know.

Really sorry the numbers aren't what you were looking for. I was late to the UND party myself (8 wks) and understand the frustration. But you're really close and could well come back clear on that next draw. I would jump at any chance to extend treatment, if you're given that opportunity. We cirrhotics need all the help we can get.

It doesn't look like re-treatment with Sovaldi is going to be an issue. Worst case scenario you come back a little later on and hit it again with an even better combo. I think we're both going to beat this, RC. It's just a bit more problematic for us.

Be well,

wayne

Cinnamon Girl · Guru

Hi Robert, your results show that the treatment is working by the fact that your viral load is coming down steadily week by week, so I think the best thing is to be patient and wait to see what your next results are. Hopefully you`ll be undetected by then after another 2 weeks of treatment so try not to be too downhearted.

I know it must be frustrating for you and I can understand why you`re worried, but all you can do is just keep going and we`ll all be hoping for the best. I don`t know the details of the rescue plan your nurse mentioned but just take it step at a time, and let`s see what your next results show.

Take care, and good luck!

robertsamx · Guru

Baseline hg 15.0 pl 144 alt 290 ast 130 br 0.6 lipase 769 amylase 241 log 6.75 v/load 5,666,000

week 1 hg 14.1 pl 178 alt 118 ast 56 br 0.9 lipase 76 amylase 76 log 3.17 v/load 1,490 after 11 sofosbuvir and 60 riba

week 2 hg 13.6 pl 153 alt 63 ast 35 br .7 lipase 87 amylase 66 log n/a v/load 601

week 4 hg 14.8 pl195 alt 52 ast n/a br1.4 lipase 72 amylase 76 log 2.14 v/load 139

week 8 hg 13.4 pl 158 alt 60 ast 66 br .08 lipase 78 amylase 57 log 1.43 v/load 27

Im not happy with the latest results, most on this study go UND at 3 to 5 weeks. If you don"t go <15 at week 8 on this study you must go in for a re draw and if your not <15 they pull you off the study. Im going in this friday 4-18-14 for the blood draw,and by that time I will have had two more weeks of the study drugs and hopefully it will be enough more

of the sofosbuvir and riba to go <15 ( the F-4 cirrhosis ) dosen"t help matters I dont know what to think or do?? Study nurse said something about rescue program but did not detail the program. 24 weeks is the standard treatment for type 3 cirrhosis and to think I might get pulled off after 10 weeks of treatment has me really messed up. Can anyone tell me how or what to do ?? Thanks RC

OldenSlow · Senior Member

Hey Robert,

For what it's worth, my HG dropped significantly the first month, levelled off at wk 6 and started moving up again at wk 8. Hear ya about the riba. Stuff sucks.

wayne

Tig · Admin

Hey RC,

Sounds like you're enjoying the fun run of side effects! From the sound of your post, you're handling it like a true warrior! I like your attitude about maintaining your full dose of Riba, it's no damn fun but it's sure effective and the battle is 90% of the victory! Keep your chin up and pay close attention to the rage. You're at a point in tx when it starts to really stick it's ugly head up. You're already ahead of the game, as you're aware of it's ugliness and potential. Do your best to keep a clear mind, check in here regularly and keep us abreast of your symptoms and sfx. I look forward to hearing your upcoming results. Hang in there bud, I'm pulling for you!!

Tig

robertsamx · Guru

I have been laying low, my two week blood draw results showed my HG droping. At my one month blood draw my study nurse sugested that she may need to back off on my riba, well that freaked me out . The phone rings and i think thats the call to back off on riba. Well I go this friday for my two month blood draw and I never got the call to back off the riba. All that worry for nothing!! And the riba rage at the end if the day is scarry, not to mention the sleep trouble, all you out there on riba know what i mean. So far so good, I have been afraid to call the study nurse for my one month results because i did not want to baclk off on the riba. So I will be posting my one mopnth results this friday evening. RC

longld · Senior Member

Link to this trial at: http://clinicaltrials.gov/ct2/show/NCT01962441

Looks like a 16wk/24 wk trial for geno 2/3.

Cinnamon Girl · Guru

Hi RC, those are good looking numbers and you must be very pleased with how it`s going! Your Hg is holding up reasonable well and it`s great to see those liver enzymes dropping!

Difficulty with sleeping is very common with ribavirin but at least you`re not being troubled by an itchy rash, which is a definite blessing.

Keep us posted, you`re doing very well! smile

robertsamx · Guru

Thanks Tig, Its my heart issue that could cut the riba back, will know in next 7-10 days. Im hoping to keep riba up as long as i can Thanks to everyone on the forum for your support,and general knowledge.This hcv has been a secret for 30 years, now i can talk about it. thanks all of you!

Tig · Admin

Hey RC,

Excellent numbers bud! You definitely have those cooters on the run, yee haw!! Everything is looking so promising, and as Wayne stated, your VL in four weeks has plummeted significantly. Your Hb is fair, but the fatigue is likely to drop as it continues down. You know the culprit behind that is your Riba, but you want to keep that dose as high as you can. Your Hb is an excellent indicator of stormy weather among the viral occupants inhabiting your liver. Keeping the Sov/Riba boot on their throat appears to be working for you, yeah! Stay with it Brother, we're all pulling for ya!

Tig

OldenSlow · Senior Member

Looking good, RC. That's a 4 log drop in 18 days! UND soon. You're on your way. ;)

robertsamx · Guru

Baseline hg 15.0 pl 144 alt 290 ast 130 br 0.6 lipase 769 amylase 241 log 6.75 v/load 5,666,000

week 1 hg 14.1 pl 178 alt 118 ast 56 br 0.9 lipase 76 amylase 76 log 3.17 v/load 1,490 after 11 sofosbuvir and 60 riba

week 2 hg 13.6 pl 153 alt 63 ast 35 br .7 lipase 87 amylase 66 log n/a v/load 601 after 18 sofosbuvir and 105 riba

The blood draws were at day 11 and day 18 that is how the blood draw timing worked out, but all within the trial guide lines todays draw is day 29, will post numbers next week .

Still having trouble sleeping, ambien helps, no itching or rash, a little tired after 3:00 in afternoon. Numbers are coming down, Everybody keep up the good work RC

-- Edited by robertsamx on Wednesday 5th of March 2014 04:53:42 AM

Matt Chris · Guru

Hey Robert

Congrats on your 11 day results, quite a drop on your LFT levels.

Don't concerned about your HG you will be fine.

matt

Cinnamon Girl · Guru

Hi Robert, those are great results so early into your treatment, no wonder your blood pressure shot up with the excitement!

No need to worry about your HG at this point, it`s still fine at that level. The ribavirin will be causing it to drop and it will quite likely drop further as you go along, but you`re being carefully monitored. If it drops below 10 your trial doctor will most likely want to reduce your riba dose which would bring your HG level back up, but it would have to drop quite a lot more before there`d be any risk of having to stop treatment.

Glad you`re feeling good, try not to worry...keep us posted! smile

lauralou57 · Senior Member

Congragulations! Keep up the good work!

robertsamx · Guru

RESULTS OF WEEK ONE BLOOD DRAW, WELL ACTUALY 11 DAYS INTO TREATMENT BLOOD DRAW. AFTER 11 SOFOSBUVIR, AND 60 RIBA, MY RESYLTS ARE AS FOLLOWS---

BASE LINE HG 15 PL 144 ALT 290 AST 130 BR 0.6 LIPASE 769 AMYLASE 241 V LOAD 5,660,000 LOG 6.75

DAY 11 HG 14.1 PL 178 ALT 118 AST 56 BR 0.9 LIPASE 76 AMYLASE 76 V LOAD 1,490 LOG 3.17 V LOAD ONE THOUSAND FOUR HUNDRED NINTY

I"LL TAKE THOSE RESULTS ANY DAY. I HAVENT BEEN UNDER 125 ON MY AST FOR 30 YEARS MY ALT IS ALWAYS OVER 200.

TODAY WAS THE WEEK TWO BLOOD DRAW, WELL ACTUALY 18 DAYS INTO TREATMENT AFTER 18 SOFOSBUVIR AND 105 RIBA. WILL GET THESE RESULTS BY END OF NEXT WEEK AND WILL POST. AFTER STUDY NURSE TOLD ME MY RESULTS MY BLOOD PRESSURE SHOT UP TO 180/105 FREAKED HER OUT BUT IT SETELED DOWN AFTER 30 MIN"S. I GOT PRETTY EXCITED WITH THE NEWS.

MY HG DROPED FROM 15 TO 14 ANY CONCERNS?? INPUT HELPFUL ON THIS, I THOUGHT I READ THAT A DROP AT FIRST WAS A GOOD SIGN, BUT IT WOULD LEVEL OFF AFTER A COUPLE WEEKS?? I DONT WANT TO CUT BACK ON REBA EVER, BUT THE OLD TICKER WACKS OUT ONCE IN A WHILE SO DR IS REALLY WATCHING MY HG. FEELING GOOD THANKS ALL RC

robertsamx · Guru

Study nurse called yesterday, all is ok. Im going back friday for week 1 blood draw, it will be 9.5 days into treatment/trial. Im feeling very well, just a little trouble falling asleep in the evening. No big deal!!! The shacking is gone. Looks as though Mallani called this one correct THANKS M. After the ups and downs of the screening prosess,I worry about every little abnormal result, dont want to get booted off trial. I need to chill and go with the flow ..I havent had a normal test result in 30 years LOL. RC

robertsamx · Guru

Thanks Mallani, Im just a little worried about being removed from the study because of the high levels. Study nurse asked me how I was feeling,I told her I felt great, shes going to talk to the Dr. and get back to me, She thinks the Dr will want me back to the Trial hospital 3 days sooner than we had planned, so I may return on tuesday insted of next friday. Tuesday will be the true one week blood draw, Should I be concerned about being removed from the study? If I had pancreatitis woulden I hurt in my belly area?? I have no pain at all. thanks RC

Matt Chris · Guru

Hey Robert

Congrats on starting your treatment, I remember that shaky feeling in those first couple days its almost like their is a battle going on inside. Either it slowly diminishes or we get used to it whatever the case it brings a end to the life cyle of millions of viral components.

Hang in there it will be over before you know.

matt

mallani · Guru

Hi Robert,

Assuming you don't have pancreatitis, the serum amylase and lipase are often elevated in cirrhotics. Up to 50% may show levels like yours. It is thought to be due to decreased ability of the liver to process these enzymes. Carry on! Cheers.

robertsamx · Guru

my study nurse called, she said my lipase was 769 and my amylase was 241. said they were both high. normall being 100 & 120 respectively. any thoughts on this anyone?

these results were from blood draw at baseline, before first dose of study drugs. my alt was 290 ast 130 they are both down the screening blood work. thanks all RC

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