Genotype 1a on triple

[notsoeasy]

Dear All,

My liver functions were really bad few months ago and getting worse, GGT was 363, AST and ALT 98 and 88 rispectively, Ferritin 461, Bilirubin 22, and what was really bad the alpha-fetoprotein was 76 when maximum is less than 5. Alpha-fetoprotein is both a cancer and severe liver desease indicator. My hepatologis was very concerned, and asked me to start treatment for God sake. So I did, still want to have time to spend with my son.
I started Interferon and Ribavirin in March; after 4 weeks the blood test showed some little improvement, but not enough. We added Boceprevir, and after 2 weeks the blood test showed marked improvement, liver function about normal a part from GGT still 211 and Alpha feto 26. TWO weeks!!
I had then to stop Boceprevir for 2 weeks because my blood platelets and white cells where plunging - a side effect of the tx - and to reduce the other drugs. We know there are some stimulator of the bone marrow, but in the country where I am living they are not approved for Hep C treatment. Now those blood cells are improving again and I am happily on track again. Last test was good, GGT 118 whitout Boceprevir yet, all other liver desease indicators normal. The virus was still detected but we are waiting for the viral load count which takes longer. Next blood test in two weeks time with the Alpha feto.
I said happily on track: I am. I feel much better, I had no dreadful symptoms whatsoever, just the first Interferon shot some flu-like symptoms, easily solved with Panadol 1 gram two hours before and 1 gram two hours after the shot. A slight headache and a bad taste after taking che Boceprevir, which I fight with a little pure liquorice candy, drinking  2-3 liters per day of filtered water and doing some exercise as people in this site kindly suggest. I have been reading here a lot, God bless you for being so helpful!!

I do not know whether I will have to stop again the tx due to the effects on the blood cells, and how this will affect the likelihood to clear the virus but, as long as I am concerned, my liver is far more better, and if I can't beat the virus at least I am buying myself some time, new treatments will be approved soon so I have hopes.

Never stop trying.

I felt I had to share this with you, thanks and wish all the best to every member of the group (and every passing reader :-) )

Laurie

[notsoeasy]

Here we are :-)

I got the results and went to my hepatologist today.
He is quite happy with my results and so am I.
Viral load on 17/6 is 2.91 x 10^2, which is down to 291, 3.52 logs from the pre treatment.
All other result are ok, a part from GGT still 134 (but were 398 at the beginning.
I am taking  2 Victrelis 3 times a day, increasing tomorrow to 3 x 3 times.
Riba 2 x 2, Peg 1/2 syringe.
I'll check blood cells tomorrow.
Three month of treatment, and looks like I didn't do anything else in life but checking time and swallowing pills, LOL
But I still feel fine, no side effects other than hair getting thinner and fainting everywere.


Hang in there :-)

[notsoeasy]

Hi All

It has been a pretty busy time for me and I did not have time to login up here, but here I am again, with some update.
I had my week 10 (since I started interferon)  blood work done, and I am posting the results, just to share how my "personalized" therapy is going :-)
Here is a scheme:

Cumulative:         04/06/13 06/05/13  15/04/13  12/04/13  05/04/13
Liver_Functions
AST         (U/L)        37             43             79             79            98
ALT         (U/L)                          36             71             75            88
ALP         (U/L)       118          117           151           147          154
GGT         (U/L)       144            211        298           307          363
Bili        (umol/L)       13            16            19             20            22
Prot        (g/L)           76             71            72            75             74
Alb         (g/L)            37            37             38            38             39
Glob        (g/L)           39            34            34            37            35

04/06 HAEMATOLOGY
   RED CELLS                          
   Hb  .  .  121  (115-160) g/L    
*   RCC 3.78    (3.80-4.80) x10 ^12 /L
*   Hct 0.34    (0.37-0.47)      
    MCV   91       (80-100) fL        
*   MCH 32.1    (27.0-32.0) pg        
    MCHC 351      (320-360) g/L        
    RDW 12.5       (9.0-15.0)      
*  ESR .  .   32     (1-20) mm/hr
   PLATELETS  
*   Count .   46  (150-400) x10 ^9 /L
*   MPV   11     (6-10)     fL

WHITE CELLS
*  Count   3.23  x10 ^9 /L (4.00-11.00)
DIFFERENTIAL COUNT   x109/L
*Neutrophils  53.8%  1.74 (2.00-7.50)
Lymphocytes  38.2%  1.23 (1.20-4.00)
Monocytes     7.1%  0.23 (0.20-1.00)
Eosinophils   0.2%  0.01 (0.00-0.50)
Basophils     0.8%  0.02 (0.00-0.20)
From 6/6 increased Victrelis: 400mg at 08:00, 600mg at 20:00; increased Ribavirin: 200mg at 08:00, 400mg at 20:00. Interferon still 1/2 syringe.

Full Blood Count on 13/6:

13/6 HAEMATOLOGY
   RED CELLS                          
   Hb  .  .  126  (115-160) g/L    
    RCC 3.93    (3.80-4.80) x10 ^12 /L
*   Hct 0.36    (0.37-0.47)          
    MCV   92       (80-100) fL        
*   MCH 32.2    (27.0-32.0) pg        
    MCHC 350      (320-360) g/L        
    RDW 12.5       (9.0-15.0)          
                                      
   PLATELETS  
*   Count .   47  (150-400) x10 ^9 /L
*   MPV   11     (6-10)     fL
            
WHITE CELLS
*  Count   2.77  x10 ^9 /L (4.00-11.00)
DIFFERENTIAL COUNT   x109/L
*Neutrophils  43.4%  1.20 (2.00-7.50)
Lymphocytes  46.9%  1.30 (1.20-4.00)
Monocytes     8.6%  0.24 (0.20-1.00)
Eosinophils   0.9%  0.02 (0.00-0.50)
Basophils     0.3%  0.01 (0.00-0.20)

I can see my Neutrop plungin' again.... :-(  but I try to hang in there.

I still feel good, but I am dropping my hair everywhere :-); being very long and very blond it is a real mess, I can tell you  ehehehehehhe.....

Next week I will have my month 3 tests, should have been my week 8 of Boceprevir, but as you know I stopped it for two weeks.
Ah, just noticed that I mentioned in my previous post at some point my viral load at week 6 of TX, it typed it wrong, was  week 8 since I started interferon (and only 2 weeks of Victrelis instead of 4). Just to keep the record right.

Sorry for the long long post.

Good bless you all

[notsoeasy]

Hi Idyllic (this nick evoke some nice picture of countrysides :-) )

yeah, I agree with you saying "how the treatment is like in other countries", but this is how it is.
So, just to quick reply to all the people concerned about my "proactivity"
in my therapy, I would like you to know that it is a "bit more stretched" than politely comply with what the doc says.
I am a registered nurse and my best advocate, so to speak.
This particular hepatologist is a state of the art about hep C.  I have been questioning a lot, I was reluctant to stop but I decided to trust him. We know people are on trials for new treatment, let's think I am on trial for new approach to protease inhibitor therapy :-)
We'll see.
I received my viral load at week 6 of the treatment (after 2 weeks of Victrelis) and is 2'530. At week 0 was 1'000'060.
I know you'll be probably jump on your chair, but my intake of victrelis since I reintroduced it is 2 cpr 2 times a day.

My FBC is improving, Hb still borderline now, platelets where 82 when I started treatment, dropped to 40 when I stopped Vic. My neutrophil count was 1.32 at the beginnin, dropped to 0.70 two days before my doctor left me three sms to call him back immediately (freaking me out...) and stopped the Vic. I know the deadline is 0.50 for someone, but considering the test was two days earlier and I was still taking the drug, and those were the results of two weeks, I do not blame him. We cannot use blood rescuers, so we need to give my body time to recover, and it is doing well :-)

As I said, If I can't beat the dragon, I am buying myself time. I am feeling great, more than I did for years. Still some feeling of "presence" in my liver zone and you should not feel  your visceral organs if they are ok, but I was really bad.
Two months in total, now.
I will keep you uptaded, thanks for taking interest.
This site is great, and you people are amazing.

:-)

[Idyllic]

"I had then to stop Boceprevir for 2 weeks because my blood platelets and white cells where plunging"

"I do not know whether I will have to stop again the tx due to the effects on the blood cells," (??!!)
____________________________________

Wow this really blows my mind when I hear what treatment is like in other countries.

What were your platelets and what are they now. (??) In some cases a dose reduction of certain meds might help your values slowly rebound rather than yanking you off treatment all together. Without more info it is difficult to predict. I agree with what has been said already and I strongly encourage you to become more proactive in your treatment.

I actually do not understand the bit about your white cells so I will leave that to someone else but normally on these meds the values on the CBC (complete blood count) that are looked at to gauge the meds is Absolute neutrophil count (ANC) rather than white blood cells and haemoglobin rather than red blood cells.

If you do not have them already you might want to obtain copies of all your labs in the past and from now on.

I hope this all works out and you keep in touch with us about how things are going. Best of luck to you.

[ceanothus]

I'm very happy to hear your test results are improving, but I'm also very alarmed that your doctor had you stop the Boceprivir and restart it again. The protease inhibitors (Boceprivir and Incivek) are not supposed to ever be stopped temporarily as this greatly increases the risk of viral mutation and breakthrough, with the virus becoming highly resistant to the drug. It is fairly common to temporarily reduce the dosage of the interferon or the ribavirin, but not the protease inhibitor. If you have managed to do this without viral breakthrough you should consider yourself very lucky, but please don't allow your doctor to stop the Boceprivir again until you've reached the end-point. Your doctor needs much more training in the use of these drugs. I suggest you read about this at: http://www.clinicaloptions.com/Hepatitis/Treatment%20Updates/HCV%20New%20Agents/Module/Practical_Guide.aspx?lg=filedownload#page31
I also suggest that your doctor should be told about this, and if he is not willing to rapidly learn the rules of treatment and start applying them carefully then you should change doctors ASAP. Best of luck!

[mzkity]

Congratulations! You have a great spirit! I hope you can keep going and slay the dragon this time around. Keep that spirit:):):)