Hep C Discussion Forum

RE FIBRO SCAN I saw someone was asking about this scan? It's unREAL amazing the pictures look like something out of a biology book. Imagine pictures of say an embryo, all veiny, with purple capillaries and red veins showing through a yellowish "see-thru " gelatin like body which allowed you to see everything inside the embryo so up close and detailed? One could /can see every single tiny detail - that's what a FIB SCAN picture is like of your liver .If you live in the Midwest - my doctor is the only one to have the machine . If you are interested in having a scan please email me................. PS from a personal standpoint, punch BX are kind of a joke- the punch I had before my scan said I had stage 1 fib and bridging . That was my 12 th BX - I had stage 3 bridging and fib at that time - I knew I did as it was consistently the same result over the years of BXs . The doctor who did my last BX (the stage 1 .). Said "well looks like your A ok I would t bother yourself with worrying about treatment or all this negative stuff your taking about be happy that's a great reading ". I said "do you compare your tests with other years "- he replied "well yes .. But the liver is kind of kooky and it does weird stuff like heal itself " . I looked at him and said "DUDE really ? Get real.." . FIB SCAN showed a liver that was a mess... Cirrhosis. " nothing to worry about " famous last words. Bxs are not that reliable. Hope to hear from you

Huey, what ever happended with your ct?  I've been looking and haven't seen anything,,,,if I missed it...sorry,,,,,...

An interesting presentation that asserts, in part, that cirrhosis is not the "end" of the story and that perhaps we should drop the term cirrhosis or at least recognize different "degree's of cirrhosis".  

These statements are of course, followed by charts and slides of biopsy tissue that look like more colored blobs and shadows to me.

The presentation points out some of the limitations of the current fibrosis scoring systems.

http://www.ucsfcme.com/2013/MAP1301A/slides/13FerrellLiverUpdateOnStagingOfFibrosisAndCirrhosis.pdf

Mary:  They report adverse events such as yours to the FDA.  This new information can be added to the Rx label warnings if indicated.  Thanks for the update.

Marypetrecz wrote:

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Yeah I had a ct with contrast....I had to drink that lousy stuff....I guess I'm fine...and my bloodwork is all good....they thought it was gall bladder,,,,but now...they don't know...i was given pain meds,,,and now I'm off of them and feel great again.  It was like 2-3 weeks of severe pain,,,,then it went away....no one knows....but I guess I'm not that special if other people are having that problem too.

i am 1a and f3 bridging....my vl is undetectable at 4 weeks and blood work is all normal.

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Wow, good thing you didn't have your gallbladder removed.  I guess the wedding saved you from that since you were determined not to miss it!  Funny how life works.  Not that you really need a gallbladder, but who wants some unnecessary surgery, especially while on tx?  Great to hear you are doing well.

I just returned from my six month liver ultrasound exam and get the results next week. If semi-annual ultrasounds and occasional follow-ups with my doctor are all I have to deal with post SVR, I am a lucky man.

It's still a little unnerving watching the monitor during the exam and wondering if that little round blob or shadow is a lesion. Perhaps on this occasion, ignorance is bliss.

Marypetrecz wrote:

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Huey, why are you getting a ct?

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 They are looking for cysts, 

Yeah I had a ct with contrast....I had to drink that lousy stuff....I guess I'm fine...and my bloodwork is all good....they thought it was gall bladder,,,,but now...they don't know...i was given pain meds,,,and now I'm off of them and feel great again.  It was like 2-3 weeks of severe pain,,,,then it went away....no one knows....but I guess I'm not that special if other people are having that problem too.

i am 1a and f3 bridging....my vl is undetectable at 4 weeks and blood work is all normal.

Great point cinnamon girl.  I believe good organic and local food is best.....less meats...more veggies....I do like the oils....bran....flax....I I use it with the horses too....but I stay always from most vitamins,...I stopped the oils also until after the meds....

I really do feel great. tomorrow is my 6 week blood work....no VL....I'm undectable anyway...my potassium was a little high but it's been declining,....I do love my bananas..lol.  The other blood work has been constantly in normal numbers.,,,I also have an appt with the surgeon on Thursday about the gall bladder thing,,,,but at the very most well hold off until I'm finished the meds.  what ever the problem was/is,...it's under control.  So alls good.  They want to see the CT with contrast ...disk....that was done a few weeks ago,

have a great day!

Thanks for the link.  I'll be adding it at the end of treatment.  I love smoothies and I make them real good.....I'll add the aloe Vera.

i won't add anything I don't usually use,,,,I took the flax seed oil and all other supplements out of my drinks and during treatment only use fresh fruit and yogart and almond milk And ice.

This is all great to know.....I'm looking forward to nursing my liver after treatment and being as well as I can be.  Thanks everyone!

Hi Mary,

Here's an interesting website that will provide you with some information on Aloe Vera, as well as some ideas on recommended amounts. Like everything we do during treatment, before adding any type of medicinal, be it OTC or natural, it's best to discuss it with your physician. 

http://happyandraw.com/top-12-benefits-of-aloe-vera/

Tig

Marypetrecz wrote:

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Lol.....I've never drank that much.....it really was just a thing with occasional friends.  I passed my boards in 1974.  I'm retired and yes, I was the best.  I can do a flat top with comb and scissors, no clippers......I had a Sargent from the 82 nd airborne challenge me to it....and he ended up being my customer and paying way more than he was used to.....he loved hearing the scissors....lol

i was really wondering if the liver heals and how much can be expected...I guess it's all different for every one,,,,I'm going for a big healing....so no drinking....even the champagne toast will be with sparking water and a lime twist. My docs said the inflammation will be gone but I will have scarring,...so what ever that means...I'll figure it out.

i have to say, I was so anxious about the hep and s/o but now I, very calm and very relaxed about everything, alls good at Mary's house Thanks to the wonderful people in my life and here!

 

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 Aloe Vera Juce is the best I have found for Liver Cleaning.  When I get off treatment I will have this in my tool kit when i start to repair my liver.

Tig56 wrote:

PS: There are plenty of good alcohol free substitutes available and they taste just fine. The purpose of a toast far exceeds the alcohol content of the drink!

I think this is one of the truest statements that we had seen on the longtime "can I ever drink again subject" 

Thanks Tig great insight

matt

Marypetrecz wrote:

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Thanks Lisa.  I'm still figuring all this out.  I really was looking forward to a toast when finished....but it's not worth it....I just hate having any limits,....it's the rebel in me!  I've always bucked the system....telling me I can't,,,inspires me,...I am the first woman barber in Pennsylvania,  my first union meeting was...should we let women be barbers?  Well.....it took 3 years before I was allowed to take my boards....but I did it....

so now the challenge is to stay well and treasure my liver.....yup.....I can do that.

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 Hey Mary, after treatment I'd give the old liver a nice long rest so it can heal. Then you are allowed the odd drink according to specialists. I don't have liver damage and I think it would be a long while before I touch a drop after SVR. Conrats btw, it is a real achievement :D

Hi Mary,

Even though I don't have Fibrosis I was told by my specialist under no circumstances should I drink alcohol as it can speed up the disease. So considering you are stage 3, you really shouldn't even have a thimble. :/

mallani wrote:

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Hi Omna,

The long-term effects of Interferon treatment have been discussed. The CNS and auto-immune problems are the most common, and thyroid issues are quite common.

The DAA's have not been around for long enough. The early antiproteases caused problems during treatment, but little is known about long-term effects.

New DAA's like Sovaldi and Olysio seem to have minimal side effects. Hopefully no long term problems will emerge.

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 Whatever the long term consequences of the the new DDA's, they will be nothing compared to the consequences of long term liver damage. I'm not against Interferon although it didn't agree with me, but I have to say, people whom have used it for 48 weeks do seem to have problems, and I've read a lot about teeth being affected as well as the above, plus some cognitive impairment. But others seems fine. I guess it is relevant age and overall health in the first place?

do you think these treatments have any long-term alternate side effects?

Hi Mary,

That is a very relevant question, and as usual Malcolm has the best, most complete information to offer on this subject. As for HCC, I'd like to add that my gastroenterologist told me at one point that I should get my BMI under 30, or that I would be at an elevated risk. I took that advice seriously, and have my BMI down in the mid 27 range, with hopes of going a bit lower, just for a 'safety' margin.

Hi Mary,

The liver can certainly repair itself after SVR. To what extent depends on your initial fibrosis stage. Anyone below F2-3 can expect to end up with a fairly normal looking liver. The F3's and worse can get some resolution, but there will be some residual scarring and deformity. HCC is a different matter. The risk of developing HCC decreases by about 70% after SVR, but still ~5% of post SVR patients develop HCC within 5 years. This is mostly the F4's, but a significant number of F3's can develop HCC. Older males are most at risk. This is the reason for the regular screening after SVR. Some serum markers have been discussed, and it may be possible to identify the patients who are most at risk, in the near future.

As treatments become easier, there does not seem to be the inclination to document a pre-treatment fibrosis assessment. I think this is a mistake. Cheers.