My Hep B Clinical Trial Log

New Topic Post Reply Printable Version
110 posts in this thread.
Viewing Page :
 1  2  3  4  5 
[ << Previous Thread | Next Thread >> ]

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4838
   Posted 7/28/2017 4:51 PM (GMT -6)   
luckyman316...great to hear from you and hope you are "feeling well" too.

crossing fingers with you for HBsAg negative as well!

Hugs,

ML
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

luckyman316
Regular Member


Date Joined Nov 2013
Total Posts : 210
   Posted 7/28/2017 5:00 PM (GMT -6)   
MamaLama said...
luckyman316...great to hear from you and hope you are "feeling well" too.

crossing fingers with you for HBsAg negative as well!

Hugs,

ML


Thank you. Feeling, for me, a lot better each and every day. My mind has been the clearest it has been in a while (and even more so compared to 8 months ago) but I know it's a long journey. I feel like half of it is over but still have more to go. However, this is the best major breakthrough I have seen for myself in these labs. I go back in December and until then, I will continue to live a normal life.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1226
   Posted 7/28/2017 5:11 PM (GMT -6)   
hey Lucky,
congrats on your UNDETECTED. that's exciting news!!

your creatinine looks to be on the high side. Could that be a typo?

luckyman316
Regular Member


Date Joined Nov 2013
Total Posts : 210
   Posted 7/28/2017 10:56 PM (GMT -6)   
ppm guy said...
hey Lucky,
congrats on your UNDETECTED. that's exciting news!!

your creatinine looks to be on the high side. Could that be a typo?


Yup, typo, it was actually 1.07... right within range.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1226
   Posted 11/21/2017 10:14 PM (GMT -6)   
bump up

luckyman316
Regular Member


Date Joined Nov 2013
Total Posts : 210
   Posted 1/29/2018 5:51 PM (GMT -6)   
Sorry all, been kind of quiet here but...

Since my trial continues to go (I really lucked out on the 5 year extension) then I'll share my results some more from my last visit:

HBV DNA IU/mL: No HBV DNA Detected
Total Bili: 0.6 mg/dL
Dir Bili : 0.1 mg/dL
Ind Bili : 0.5 mg/dL
AST (SGOT) - 26
ALT (SGPT) - 32
Creatinine - 1.20 mg/dL
Uric Acid - 8.2 mg/dL
Calcium - 9.7 mg/dL
Phosphorus - 3.6 mg/dL
pH - 5.5
CK - 162 U/L (Down a little but in good shape)
Parathyroid Hormone - 35.0 pg/mL
HBsAg: Positive
Fibrosis Score: 0.25
Fibrosis Stage:F0-F1, No or minimal Fibrosis

Of note, numbers on mostly everything increased slightly but not alarming and all still fall within range. I had a bad diet in November/December due to holidays so blame that for increased numbers and being a bit overweight (well more than my normal).

Additionally, my cholesterol was on the high side of the cut-off for normal and my blood pressure was VERY high, the worst it was.. I think it was 152/96 which is nowhere near normal for me. What it boils down to, is I need a good diet plan and more exercise. My exercise has been lax in the winter. I want to lose 20-30lbs by my next visit.

Lastly, I was offered the chance to participate in ANOTHER clinical trial by Janssen. My doctor said it aims at a cure within 6 months. I believe it is for:

JNJ56136379: https://clinicaltrials.gov/ct2/show/NCT02662712

It's being brought into the states and was looking for recruits. However, since it's only in Phase 2 and since I would need to go untreated for 6 months to qualify for it before I even start it, I said "No thanks... let's talk when this current trial is over in 2020 and the new one is in Phase 3. Since I don't qualify by being on this trial, and I don't want to go untreated, it could be too dangerous if the virus comes back on a viral load at an alarming rate, or I build a resistance to the meds by going off of it... and all for something that is only 6 months worth of treatment that is not a even guarantee cure yet."


Let me also add really quick.. I had to go back to get blood redrawn for the HBV DNA and Parathyroid Hormone because the labs were not able to get the results due to some tubes apparently not coming over correct to the labs (the doctor verified it was not them, it was sent properly, they think something happened in transit).

Hope everyone is well!

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1226
   Posted 1/30/2018 1:13 PM (GMT -6)   
hey Lucky,
your numbers are still very good. You will get back on track with diet and exercise..

your trial has yielded good results, and hasn't effected your health, negatively. Having a treatment that you can take long term, maintain your health, and give you sustainable results is a blessing.

Hopefully the Janssen drug will pan out. I waited years and followed many trials waiting for the hep c cure. the trials recruit patients that are more likely to respond favorably.

Has anyone in your trial gone hbsag negative??

luckyman316
Regular Member


Date Joined Nov 2013
Total Posts : 210
   Posted 2/1/2018 10:22 PM (GMT -6)   
ppm guy said...
hey Lucky,
your numbers are still very good. You will get back on track with diet and exercise..

your trial has yielded good results, and hasn't effected your health, negatively. Having a treatment that you can take long term, maintain your health, and give you sustainable results is a blessing.

Hopefully the Janssen drug will pan out. I waited years and followed many trials waiting for the hep c cure. the trials recruit patients that are more likely to respond favorably.

Has anyone in your trial gone hbsag negative??


Thanks Barry, yeah I'm watching all these trials to see if I qualify for any and if they cure anything or when they may be available in next phases or even approved by FDA.

As far as I know, 1-2 folks have seroconverted on my trial but no official data was released on them. Just their own stories from another site I post on. Seems like it happened right after they were switched to TAF on the trial and it took about a year to do so (give or take a few months). Still praying my time is coming soon for that!

luckyman316
Regular Member


Date Joined Nov 2013
Total Posts : 210
   Posted 7/3/2018 11:46 AM (GMT -6)   
Been a bit since I updated, figured I'd offer some more and what has happened between my last appointment and this one:

I walked in and found out I'm about 15lbs heavier than I was from December. So I was a tad bit over 230lbs (I'm 5'10" btw)

My blood pressure went up as well, it was a 120/100... not good. I was asked to lose 5-10lbs in 2-4 weeks and monitor blood pressure.

Within 2 weeks, I lost 5lbs and my blood pressure was closer to normal.

Now, the report from the labs:

HBV DNA IU/mL: HBV DNA < 20 IU/mL Detected (Not sure how I go undetected to detected, is it the lab?)
Total Bili: 0.5 mg/dL
Dir Bili : 0.1 mg/dL
Ind Bili : 0.4 mg/dL
AST (SGOT) - 20 (down 6 pts)
ALT (SGPT) - 31 (down 1 pt)
Creatinine - 1.12 mg/dL
Uric Acid - 7.6 mg/dL
Calcium - 9.7 mg/dL
Phosphorus - 3.1 mg/dL
pH - 5.5
CK - 163 U/L (Down a little but in good shape)
Parathyroid Hormone - Not Measured This Lab
HBsAg: Positive
Fibrosis Score: Not Measured This Lab
Fibrosis Stage: Not Measured This Lab

Now for the scary part, the Ultrasound:
Impress: Fatty Liver, Gallbladder polyps, right renal cyst
To give you the basics: Gallblader is 2 polyps, 6mm each. Kidney is lower pole cyst, 13mm. Liver is 13.8cm but no focal abnormality. All of this also showed up on the last test in December.

Anyway, just wanted to share. I'll report back after my next test late this year. Trial continues (Thank goodness) but I need to focus on me and get myself in better shape to eliminate fatty liver and help out my insides.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1226
   Posted 7/5/2018 12:45 PM (GMT -6)   
hey Lucky,
good to hear your taking care of what you can. (weight and BP). Hoprfully your gallbladder polyps remain small on your future ultrasounds. I also have a cyst on my left kidney. my cyst has been there since I started with my GI.(25 years).

Your hbv dna is below the limit of detection (>20iu/ml). that has to be a typo.

good luck with your dieting, and look forward to your progress
New Topic Post Reply Printable Version
110 posts in this thread.
Viewing Page :
 1  2  3  4  5 
Forum Information
Currently it is Saturday, September 22, 2018 7:23 PM (GMT -6)
There are a total of 3,005,754 posts in 329,260 threads.
View Active Threads


Who's Online
This forum has 161800 registered members. Please welcome our newest member, Envsciguy.
298 Guest(s), 7 Registered Member(s) are currently online.  Details
Darwayne, BossJ, Girlie, WalkingbyFaith, Q22, InTheShop, Dodgegrl_02