Just an update on my numbers here:
HBV DNA IU/mL: < 20 IU/mL HBV DNA Detected
Total Bili: 0.7 mg/dL
Dir Bili : 0.1 mg/dL
Ind Bili : 0.6 mg/dL
AST (SGOT) - 26 (up 3 pts)
ALT (SGPT) - 34 (up 4 pts)
Creatinine - 1.35 mg/dL (this went up and is too high now)
Uric Acid - 9.5 mg/dL (this went up by about 1.5 pts and is also too high now)
Calcium - 10.0 mg/dL
Phosphorus - 2.9 mg/dL (down .4)
pH - 5.5
CK - 244 U/L (up almost 100pts and now way too high)
Parathyroid Hormone - 23.9 pg/mL
HBsAg: Positive
Fibrosis Score: 0.35
Fibrosis Stage: F1-F2 Moderate Fibrosis
Everything else measured was within range. The big concern was with my Cholesterol because my LDL was way too high at 192 mg/dL and my total Cholesterol was 254 mg/dL. Defintiely glad I've gotten on some diet changes and exercises recently.
Additionally, my liver over the past year has gone from pretty much completely normal to a fatty liver to now having a mass on the right lobe of the liver. The mass was measured at 1.4 x 1.3 x 1.4cm and when discovered on the ultrasound, the doctor called me the same day and wanted me to get a MRI. It said: Hyperechoic consistent with hepatic steatosis. There is a new echogenic mass in the right lobe of the liver measuring 1.4 x 1.3 1.4cm" He comforted me a bit saying that this is fairly small and that I should not be too concerned about it, but naturally I've had some worry. I have a MRI scheduled coming up. The ultrasound also showed I had a gallstone (never had one before) and a 3rd polyp on my gallbladder now.
I did ask the doctor about any new clinical trials that may be more towards a cure, especially since I have what is essentially 2 years left on this one at most. He mentioned 2 of them, one from Janssen (Which looks like it was Arrowhead's therapy at some point) and one from Assembly. Here are the two:
This looks like the ARO-HBV now with Janssen. He said he has heard and seen results on this and it looks very promising
http://www.natap.org/2019/HBV/090519_02.htm
He then mentioned Assembly as well, but didn't share details:
https://www.assemblybio.com/programs/hbv/
He wasn't sure if I'd qualify for either just yet but asked I keep an eye on them. Anyway, I'll leave this post at this for now. I'm doing a few things that will definitely benefit me over the course of the next year, stuff I should have focused on the past few years. Better late than never thought! I'll keep you all posted on any findings or progress as it comes along!
Yup, this is still going on for me and I'm happy about it! I think I have 2 more years left. My doctor has been hinting at some of the newer trials in Phase II that are targeting a cure. I may strongly consider if it goes to Phase III or right after this trial is done. Anyway, my results have gotten me down a bit. While I did lose 12lbs since my last visit due to better diet and exercise (go me), 7lbs came right back in 2 weeks. I just don't know how this keeps happening so quick. I want to keep going down, not up. Additionally, my Ultrasound Lab mentions Fatty Liver or Hepatocellur Disease and that just gets me all messed up in the head right now. Increased cyst on my kidney, increased liver size and smaller polyps on my gallbladder (which seem to actually be shrinking).
Regardless of all that, here are my lab result numbers:
HBV DNA IU/mL: HBV DNA < 20 IU/mL Detected (I'd feel comfortable if it said Not Detected again.. still does not say that)
Total Bili: 0.6 mg/dL
Dir Bili : 0.1 mg/dL
Ind Bili : 0.5 mg/dL
AST (SGOT) - 23 (up 2 pts)
ALT (SGPT) - 30 (down 1 pts)
Creatinine - 1.08 mg/dL (down .02)
Uric Acid - 7.9 mg/dL (down .5 and back within normal range)
Calcium - 10.0 mg/dL
Phosphorus - 3.3 mg/dL (up .9)
pH - 5.5 (down ..5)
CK - 157 U/L (up 30)
Parathyroid Hormone - (Not calculated this test)
HBsAg: Positive (The labs say they are supposedly measuring quantitative but I'm only getting this result)
Fibrosis Score: (Not calculated this test)
Fibrosis Stage: Not calculated this test
Some of the things that concerned me last lab, and results this lab:
Cholesterol was a little high at 233 mg/dL (down 2pts but not eno0ugh, my max should be 280)
My C&GCrtClr was 126.7 mL/min (down a few pts, still high as my max should be 125.0)
HAPTOGLOBIN (HPT) (Not Measured this lab)
Direct LDL (Not Measured this lab)
Anyway, wanted to share. I'm praying for a cure for us all sooner rather than later (either naturally or through medicine)! God Bless all!
Good results!
Happy new year to everyone!
Hey everyone, just wanted to offer up my latest test results on this as my trial continues. Looks like I'm done at end of 2020, so 2 years to pray or try and cure myself here before I make a decision whether or not I want to continue meds after 7 years or attempt for a new trial.
Speaking of new trials, I did ask my doctor about the arrowhead/Janssen(JNJ) treatment and if it was in trial. He said he knew of some that were, but was not aware about this one we are talking about on here. I'll have to send him some info since it looks so promising.
Additionally, I've kept off my 5lbs and my blood pressure was normal this time... I really do need to lose about 50lbs though. Maybe I'll work on this in 2019!
Now, the report from the labs:
HBV DNA IU/mL: HBV DNA < 20 IU/mL Detected (I'd feel comfortable if it said Not Detected again)
Total Bili: 0.5 mg/dL
Dir Bili : 0.1 mg/dL
Ind Bili : 0.4 mg/dL
AST (SGOT) - 20
ALT (SGPT) - 31
Creatinine - 1.10 mg/dL
Uric Acid - 8.4 mg/dL (This is high)
Calcium - 9.9 mg/dL
Phosphorus - 2.4 mg/dL
pH - 6.0
CK - 126 U/L (Down a lot)
Parathyroid Hormone - 40.4 pg/ML
HBsAg: Positive (The labs say they are supposedly measuring quantitative but I'm only getting this result
Fibrosis Score: 0.28
Fibrosis Stage: F1, No or Minimal Fibrosis
These are some typical results. There were some things I need to keep and eye on and I noticed they started to add Vitamin Level checks on this report, but they were all normal (Yay!). For the concerning pieces to me:
Cholesterol was a little high at 235 mg/dL (my max should be 280)
My C&GCrtClr was 129.3 mL/min (my max should be 125.0)
HAPTOGLOBIN (HPT) was 203 mg/dL (my max should be 200)
Direct LDL should be <130 mg/dL and mine was high at 182
Guess it's time to really get on a good diet/exercise plan for the new year indeed!!
Happy 2019 to all and here's to hoping for a cure! Stay positive, friends! :)
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.
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.