Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Hi All, Had an appointment with my Hep Doc yesterday in Boston. Was told that the ole liver is now officially cirrhotic. Was diagnosed 20 years ago and suspect i contracted when i was 26. Im now 50 and even though i knew this was coming, i had hoped to keep my head in the sand with just knowing i had bridging fibrosis. My last ultrasound showed and enlarged spleen at 13.4 CM., so i guess there is no more head in the sand for me. MRI and Endoscopy are both scheduled within the next few weeks. I had my last MRI done about a year ago and my first endoscopy done back in 07. The endocscopy showed no signs of varices and i dont remember my hep doc being all that concerned with the MRI. My last biopsy was about 4 years ago and i believe at that time i was considered a 4 on the Ishak scale. My understanding is that 6 was considered cirrhotic. I have been through a few studys. Consensus IF, Iron Removal, HALT C and then went through 72 weeks of Peg and Riba ending about 1 1/2 yrs ago. I cleared and stayed that way during both the HALT C trial and the 72 week stint. I was a slow responder both times, clearing somewhere between the 12th and 24th weeks. The last time i was treated, i also had to start taking neupogen injections once a week about a year into treatment. My white blood cell count started dropping and it was decided i needed to take it. So thats my history in a nutshell. Going forward it looks like ill be one of the first kids on the block to start in on the Telaprevir. My next appointment is on June 30th and starting therapy shortly thereafter. I was a little shell shocked after leaving Boston yesterday, thinking this is my last shot at saving my liver. My girlfriend was pretty upset and worried about it as well. I was told by the nurse who will be handling all the new patients taking telaprevir, that most clear by week 2 and that its possible some may spike back up before week 4. She said that if the virus is present at week 4 or is higher than so many copies pr ? (sorry dont recall the numbers) that they would stop treatment. Well wish me luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Hi Larry Please get your head out of the sand - any liver disease is not a joke. - I have questions. I dont understand - you said that you cleared - why must you treat again? What are you doing to aid your liver at home? [Hopefully you havent been using alcohol or street drugs.] Hopefully the addition of Telaprevir in your next treatment will finally cure you, once and for all, so that you can get your life back, and your liver will heal. [The liver can re-generate, you know.] Even if you fail to cure with the triple therapy, that is not your last shot at some sort of treatment. There are several other options should treatment fail, and according to what Im reading in the pipeline news, there is bunches more comming. Can I make a suggestion? I have read in the news that Vitamin D helps the treatment meds work. http://Hepatitis Cnewdrugs.blogspot.com/search/label/vitamin%20D Also it is probably a good idea to have another biopsy, just to find out where exactly your liver stands today. A lot of things can change in 4 years. Larry, we are all blasting you with success in healing. Please be strong. love don in ks From: lotlman <lotl@...>Subject: [ ] Cirrhosis Concerns Date: Wednesday, May 11, 2011, 8:52 AM Hi All,Had an appointment with my Hep Doc yesterday in Boston. Was told that the ole liver is now officially cirrhotic. Was diagnosed 20 years ago and suspect i contracted when i was 26. Im now 50 and even though i knew this was coming, i had hoped to keep my head in the sand with just knowing i had bridging fibrosis. My last ultrasound showed and enlarged spleen at 13.4 CM., so i guess there is no more head in the sand for me.MRI and Endoscopy are both scheduled within the next few weeks. I had my last MRI done about a year ago and my first endoscopy done back in 07. The endocscopy showed no signs of varices and i dont remember my hep doc being all that concerned with the MRI.My last biopsy was about 4 years ago and i believe at that time i was considered a 4 on the Ishak scale. My understanding is that 6 was considered cirrhotic.I have been through a few studys. Consensus IF, Iron Removal, HALT C and then went through 72 weeks of Peg and Riba ending about 1 1/2 yrs ago. I cleared and stayed that way during both the HALT C trial and the 72 week stint. I was a slow responder both times, clearing somewhere between the 12th and 24th weeks.The last time i was treated, i also had to start taking neupogen injections once a week about a year into treatment. My white blood cell count started dropping and it was decided i needed to take it.So thats my history in a nutshell.Going forward it looks like ill be one of the first kids on the block to start in on the Telaprevir. My next appointment is on June 30th and starting therapy shortly thereafter.I was a little shell shocked after leaving Boston yesterday, thinking this is my last shot at saving my liver. My girlfriend was pretty upset and worried about it as well.I was told by the nurse who will be handling all the new patients taking telaprevir, that most clear by week 2 and that its possible some may spike back up before week 4. She said that if the virus is present at week 4 or is higher than so many copies pr ? (sorry dont recall the numbers) that they would stop treatment.Well wish me luck.------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2011 Report Share Posted May 12, 2011 Don, Head in the sand was a figure of speech and only used as a feeble attempt at humor. I have a tendency to be a negative person and try not to relay that in my posts. Been clean and sober for 22+ years, so no alcohol or drugs. I havent been doing much as far as diet, herbs or other liver detox options. Ill look into the Vitamin D and other options before starting treatment this time. Years ago i spent a lot on Milk Thistle and other herbs etc. and i guess after my 2nd failed treatment, i decided to save my money. Probably not the best choice and im sure a lot of things have changed. When i mention that i cleared, i didnt mean a sustained viral response, rather cleared while on treatment. I relapsed once off treatment. Thank you for the suggestions and that link. As far as the biopsy is concerned, my Gastro has scheduled both an MRI and Endoscopy and we did discuss having another biopsy done, but for now they didnt think it was necessary. Things have changed in the 4 years since the last biopsy. I had regular ultrasounds done and this last one showed the increase in spleen size, so i guess they know the fibrosis has progressed. Im sure we will do another biopsy within the next year. Thanks Larry > > > From: lotlman <lotl@...> > Subject: [ ] Cirrhosis Concerns > > Date: Wednesday, May 11, 2011, 8:52 AM > > > Hi All, > Had an appointment with my Hep Doc yesterday in Boston. Was told that the ole liver is now officially cirrhotic. Was diagnosed 20 years ago and suspect i contracted when i was 26. Im now 50 and even though i knew this was coming, i had hoped to keep my head in the sand with just knowing i had bridging fibrosis. > > My last ultrasound showed and enlarged spleen at 13.4 CM., so i guess there is no more head in the sand for me. > > MRI and Endoscopy are both scheduled within the next few weeks. I had my last MRI done about a year ago and my first endoscopy done back in 07. The endocscopy showed no signs of varices and i dont remember my hep doc being all that concerned with the MRI. > > My last biopsy was about 4 years ago and i believe at that time i was considered a 4 on the Ishak scale. My understanding is that 6 was considered cirrhotic. > > I have been through a few studys. Consensus IF, Iron Removal, HALT C and then went through 72 weeks of Peg and Riba ending about 1 1/2 yrs ago. I cleared and stayed that way during both the HALT C trial and the 72 week stint. I was a slow responder both times, clearing somewhere between the 12th and 24th weeks. > > The last time i was treated, i also had to start taking neupogen injections once a week about a year into treatment. My white blood cell count started dropping and it was decided i needed to take it. > > So thats my history in a nutshell. > > Going forward it looks like ill be one of the first kids on the block to start in on the Telaprevir. My next appointment is on June 30th and starting therapy shortly thereafter. > > I was a little shell shocked after leaving Boston yesterday, thinking this is my last shot at saving my liver. My girlfriend was pretty upset and worried about it as well. > > I was told by the nurse who will be handling all the new patients taking telaprevir, that most clear by week 2 and that its possible some may spike back up before week 4. She said that if the virus is present at week 4 or is higher than so many copies pr ? (sorry dont recall the numbers) that they would stop treatment. > > Well wish me luck. > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
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