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Post Info TOPIC: How others are doing.
mallani


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RE: How others are doing.
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Hi all, this is a continuation and really is only of interest to cirrhotics.

Had a call from my doc today. He is not back at work for a week so I presume he was checking up on me. As my Hb was 8.6 last Friday, the Riba dosage has stayed the same and he was happy about that.  He discussed the problems with his cirrhotics ( on Victrelis)- apart from me, the age range is 42 to 55 yrs. About a third had dropped out due to Sx, and all are struggling.

He was given access to Incivek 4 months ago. Since then, he has started 14 cirrhotics.  Only 2 made it to 12 weeks! There are only a few Hepatologists here that have access to Incivek- all had very high drop-out rates. These figures appear abnormally high, but he is considering only using Victrelis in cirrhotics.

There are no significant Phase 3 Trials in Australia, using the new antivirals. Gilead has restricted the sofosbuvir combo trials to the US and Europe. There was one Phase 2 trial using sofosbuvir and Riba (similar to Rockyfella's), but the results were poor. Some trials may be announced but all will be for treatment-naives and non-cirrhotics.

It must be exciting being an Hepatologist in the US at the moment. Over here it must be bloody frustrating!



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
mallani


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Hi Mike, HCV can indeed cross the blood-brain barrier. There are many CNS effects from HCV, and this is now believed to be from direct infection of CNS cells. As some of the antivirals cannot cross the b-b barrier, it is suggested this may be the site of extrahepatic reservoirs of virus. What is less certain is whether the virus can replicate here, and re-enter the blood.  The organ of choice for the HCV is the liver- initially it was thought that only hepatocytes could be entered. HCV has now been found in virtually all liver cells including epithelial cells lining blood vessels and bile ducts, Kuppfler cells and stellate cells.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
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I have wondered about being undetected during treatment and relapsing after treatment. I wonder if HCV can cross the blood brain. I have not seen any studies on this or if CSF has ever been tested. Thoughts?

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1b, 3rd time around on treatment. Stage IV cirr. Undetectable at 8 weeks with Incviek. Been infected since the late 70s. 48wk treatment completed. Sustained undetectable. 
mallani


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It seems appropriate to carry on using this thread. At my doc's visit last Friday, he could see that I'm really struggling so spent some time discussing latest developments. There is a lot of inter-Hepatologist communication that hasn't been published, so I'll summarise what interested me. My doc works from a Private Clinic with 4 other Hepatologists, and together they are probably treating 25% of the HCV patients in Brisbane (pop. 2.2M). There is some preselection as they are only treating patients with Private Health Insurance ( ~50% of the pop.), so the patients are generally older and from a higher socio-economic group.

He is concerned about his large number of Geno 2 and 3 patients that have failed SOC. He has the impression these Geno's are presenting later, often with F3-4 and F4. He is very keen to get access to new DAA's, like sofosbuvir, for these Geno's.

He believes there should be subgroups in the F4's with Geno 1. At the moment, F4's are either compensated or decompensated, with the decomp.'s not being offered Rx. The compensated F4's are all lumped in together for SVR rates, which he thinks is unfair. He lists a number of factors that make some F4's more like the F3-4's. these are: sex, chronological age, biological age v. chronological age, Child-Pugh Score , presence or absence of other disease e.g. cardio-pulmonary, diabetes, renal problems, blood problems etc., general level of physical and mental fitness......I forget the rest. He may just be trying to cheer me up, but claims that some F4's look at the published SVR rates and want to wait for something better!

Progress is being made on establishing the reason for relapse in the EOT Undetecteds. It is assumed that at EOT, there may still be some residual virus in the blood. However, relapse is thought to come from rests of virus in extrahepatic tissue. The dendritic cells of the CNS, the T cell lymphocytes in lymphoid tissue and the blood monocytes are being looked at closely. These are all low levels of HCV, and the patients who achieve SVR can cope with these. The relapsers can't ? why. The very few patients who relapse after SVR all show the original 'wild-type' virus, so it is thought a tiny amount of virus may persist for many years.

All very interesting- perhaps?



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
hrsetrdr


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Malcolm,  I'm sorry that you missed the golf chat with your dr but the rest of the visit sounded quite interesting anyway.  roflaw.gif

 

Seriously though, I know that you're reaching deep within to muster up the strength & determination to keep on with the wicked brutal effects of tx.     Keep on doing what you do, sir.



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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
mallani


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Saw my doc again this morning. I think he was sympathetic due to my recent eye problems , and we had a long chat. An update on his original 6 cirrhotics- one has stopped Rx due to detectable HCVRNA at 24 weeks, and another had to stop at 20 weeks due to severe anaemia. He now has 23 cirrhotics on Victrelis.

He is also co-running the GS7977 trials here in Brisbane. Although early on, he has the impression that the Undet. rate is lower than for Victrelis. The Sx are certainly less severe.



-- Edited by mallani on Friday 26th of October 2012 01:10:18 AM

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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
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mallani wrote:

I was quizzed about what physical activity I could manage, and was told I'm better off than most. 4 are unable to drive!. At least that has put things in perspective for me, and I accept his opinion that I should stay on the full dose of Riba for as long as possible.

He has about 100 patients that have declined Rx at present. All are F2 or less, and are waiting for less toxic drugs.

I am glad you are holding up relatively well, and that I am far from the only one too chickensh*t to go on triple therapy. biggrin

 



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Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 
Bills


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Mary Jane wrote:

thanks for sharing, your knowledge is valued, as Joann so sweetly stated, for me 2nd week done.. tomorrow,  my mind is focused on my 4 weeks labs.. peace and love MJ

 Hi MJ  That's it look ahead try not to look at the present Very soon for some reason it will be the past i know your giving this dragon a real fight member Game On   Peace to you too 

Bills



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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

Mary Jane


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thanks for sharing, your knowledge is valued, as Joann so sweetly stated, for me 2nd week done.. tomorrow,  my mind is focused on my 4 weeks labs.. peace and love MJ



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Do not go where the path may lead, go instead where there is no path and leave a trail.Ralph Waldo Emerson

1a - VL 22 million  F2- IL28B- CT / Inck-Riba- Peg triple therapy 9/15/12 UND 4/8/14  8 wks BT ..3/1/2013 done! 3wks Post UND
news


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Wow! This tends to put it in focus. Sometimes I forget what we do here. It gets so familiar. But we are some hard working, serious workers focused on results. It does me proud to associate with such an elite corps. I used to think my Incivek protocol was tough. And it was. But it only lasted twelve weeks. This long term Victrelis treatment sounds pretty rugged. I admire you guys.

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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
Karen


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Ditto to JoAnne's comment...Always worthy of taking the time to read your posts. Thanks... and Thanks JoAnne for expressing it so well;)



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
JoAnneh


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You are a world of great information!!!
Thank you!!! You mean so much to us on the forum.
JoAnne

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
jrc


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Good information!

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Geno 1 A Started Tx w/ Victrelis  8-3-11, Viral Load  21.2 Million,  Und Weeks 4 Through 28 ,End Of Tx 2-15-2012 !SVR
mallani


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I acually had an interesting doc's visit this morning. At least he didn't discuss his golf handicap! As I have posted, Vict. and Inciv. are not available on the PBS in Australia, but Merck supplied Victrelis to selected Hepatogy practices free of charge in Feb 2012. PBS approval is expected in March 2013. My doc has 89 patients on Vict. at the moment. 6 are cirrhotics (F4's), all are male, with an age range of 55yrs to 69 yrs. All had a biopsy in the last 5 years and all had a Fibroscan (done on his machine) in the last 6 months before start of Rx. Only 1 other had an undet. at 8 weeks, but all were undet. at 12 weeks. None of the cirrhotics are able to work and the Hb range is 8.2 to 9.6(me). He has reduced Riba. in 2 patients to 800mgms/day. The present duration of Rx ranges from 16 weeks to 29 weeks(me), all are on the 48 week protocol, and he has not had any drop-outs so far. I was quizzed about what physical activity I could manage, and was told I'm better off than most. 4 are unable to drive!. At least that has put things in perspective for me, and I accept his opinion that I should stay on the full dose of Riba for as long as possible.

He has about 100 patients that have declined Rx at present. All are F2 or less, and are waiting for less toxic drugs.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
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