Hep C Discussion Forum

Nothing could be finer!

Great results Jaded.

I am so glad you keep posting and updating us all with your excellent news.

What good days!  : )  C. 

Tig wrote:

---

WOW and DOUBLE WOW!

How totally fabulous that update is, Jaded! That's what we all strive for and you have reached a goal only imagined a few short years ago. Congratulations isn't enough to express my joy and admiration for what you've accomplished. The word is AWESOME!

---

 Thanks Tig and everyone. You know, you had asked me if I had fatty liver before and I said there was once such a comment after an ultrasound (mild) which was also commented once again last January. So I decided to lose some weight after reading that belly fatty increases the likelihood of fatty liver disease and related cirrhosis. I really have never been fat in my life but I did collect a little extra belly fat mostly because of all the nuts which have been a staple of my diet. Dropping just 10 lbs really improved my blood pressure and overall the way I feel day-to-day. There were no remarks in my last ultrasound of fatty liver this time (2 weeks ago) and I think it really makes a big difference in liver health in general as well as overall health. I urge everyone to try to drop your fat and get slim. When you feel those carvings to eat have a couple of large glasses of water instead. If you bloat yourself a little you will feel full and won't want to eat. I dropped the 10 lbs in a few weeks doing this. I think have an extra layer of belly fat affects the fibroscan reading and it's possible that a lot of people are really a stage or 2 lower than the are scoring. In any event I've read that the older you get being thinner improves your life expectancy greatly and I will be giving this more attention now.

Wow what a fantastic birthday gift for you

happy birthday indeed!

thanks for sharing such wonderful and hope giving news with us

 

Excellent update, Jaded!! Let it be known that we can and do repair!  You have been set HepC Free!

Live on!

 

Cheddy

robertsamx wrote:

---

Hi Jaded, You are living PROOF that the liver regeneration is for real. To go from a F4-18.8 to a F1-7.4 is impressive and your spleen size now from 17.2 cm to 12.5.  Miracles do happen!

Great ultra sound results on texture of your liver as well. It sounds like you have and will dodge the HCC bullet. Congratulations on a great check up!!   RC

 

 

 

---

 You know...my DR is and was pretty matter of fact about all this. He has been saying it's what he expected and sees now often and so I think it's not really viewed as a miracle these days and more of the norm. That's good new for everyone and lots of reason for optimism.

Hi Jaded, You are living PROOF that the liver regeneration is for real. To go from a F4-18.8 to a F1-7.4 is impressive and your spleen size now from 17.2 cm to 12.5.  Miracles do happen!

Great ultra sound results on texture of your liver as well. It sounds like you have and will dodge the HCC bullet. Congratulations on a great check up!!   RC

 

 

 

thanks for this great update jaded

i finished my harvoni on june 25th, and it's good to know i'll be feeling up to parr as each day passses.

i'm so thankful i went ahead and did the harvoni tx.

i love to read updates.

5

Hi everyone. Well...it's 2 years later and I thought I'd post an update because I had my annual fibroscan today. My score was 7.4 and my Dr equates that as F1. My 2017 score was 7.9. Hopefully I will continue to drop below a 7 which my Dr say's will be be F-0. It was 18.8 F-4 before TX 3 years ago.

My blood test came back with everything in the normal range and with ALT-21/AST-28 and platelet count of 161.

My ultrasound 2 weeks ago showed a normal size spleen for the first time of 12.50 cm down from 17.2 cm 2 years ago and I now have a homogeneous echotexture with mild nodularity as opposed to the coarse echotexture of previous scans.

I turned 63 on Monday and and have been working out regularly and eating very well ever since I was diagnosed with Hep C 22 years ago so I'm still pretty fit and feel very good...I'd say especially since the last year. It took close to a year and 1/2 after Harvoni to start feeling much better. I had a blast of fatigue right after I finished that lasted for about 6-9 months and then things steadily got better. I must say 5 1/2 years ago I was really down in the dumpers and I am both physically and mentally much much better. I don't worry very much any more and have slowly become the guy with the easy-going mental state I used to be. I don't want to jinx myself but I have been able to put this long chapter behind me and move on.

I hope all of you are doing well. Things seem to be much brighter these days for everyone. Canada recently broaden the coverage for treatment to everyone now. No longer are things prioritized towards those with cirrhosis only. Fortunately now there is coverage for all. New less expensive treatments out there for all genotypes. Hep C is no longer that dreadful incurable disease...just a treatable infection with relatively quick treatment times. How far we have come!

God bless you all.

 

 

 

 

-- Edited by Jaded on Friday 6th of July 2018 03:38:58 AM

Jaded wrote:

---

and there is significant variability in how one radiologist may choose to comment versus the next.

---

 I certainly agree with that statement based on my experience. After starting with US 's, I've been having MRI's done on a regular basis for the past 3 years and have had final reports that have no mention of a lesion, which I do indeed have, and even one that doesn't mention cirrhosis, which I do indeed have which are both evident based on previous and subsequent findings. So unless lesions just disappear, then re-appear, and cirrhosis comes and goes in 3 months time, then that particular radiologist, and his/her point of view for that particular day is the culprit. Go figure...

 Don't feel alone with the spleen and platelets. Mine are 71 this month, down from 81 last month, but that's how it is for me at 32 weeks post EOT with SVR. My doctor also say's "don't worry about it". So I don't, but an increase sure wouldn't hurt my pride.

Tig56 wrote:

---

The previous exams don't mention cirrhosis, you're right. This report is a routine abdominal ultrasound. They aren't an accurate means of diagnosing fibrosis. They can show size,  masses, lesions, blood flow, vessel size and surface contour which may show some nodularity. They can raise questions about it though, which require advanced screening. TE and Fibroscan are designed to stage fibrosis, but have been found to have limitations too. MRI, CT and *biopsy can be used, but aren't, either due to cost or the *invasive nature of it. 

I suggest talking to your doctor about it and see if you should have some follow up tests to confirm the degree of fibrosis you have. Don't overthink it because it doesn't change anything at this point. You have achieved SVR and you're in a much better place, certainly your liver is. You need to get a couple things clarified and continue moving forward. Lots of us have advanced fibrosis or cirrhosis and will require some form of monitoring every six months or annually for the foreseeable future. That doesn't mean we should fear it, just keep an eye on our now virus free liver and let the healing begin.

---

 Thx Tig

I really never paid much attention to my Ultrasound reports before because my Dr never went into much detail and basically tired to assure me that everything was OK. Today I received a few of my previous reports and noticed until my July 2016 report the word cirrhosis was never found. I can't really understand how after SVR and only 6 months later things seem to be reportedly worse...especially after having quite a drop in my AST/ALT and fibroscan scores. I've asked my Dr and I'm waiting to hear what he has to say. This was my July 2015 Ultrasound report.

 

This was Dec 2014...

 

 

 

-- Edited by Jaded on Wednesday 7th of September 2016 11:24:34 PM

-- Edited by Jaded on Wednesday 7th of September 2016 11:25:21 PM

There are so many threads and stickies about HCV inflammation, leading to fibrosis, leading to hardness, leading to cirrhosis, and, many about fibroscan's/biopsies, and the debates, on this website, it is a real valuable wealth of learning. 

But the key (to me) is what you said about "fibroscan measures hardness" period, true, fibroscan is a limited tool, which can discern hardness with some degree of  accuracy, and hardness can be a rough gauge of the likelihood of a persons inflammation/fibrosis/cirrhosis. 

Yet another (not that bad) overview of fibrosis:  http://www.sinomedresearch.org/hcv/articles/c7_fibrosis.htm  Ignore where it came from, it's how they explain and define the actions of fibrosis I focus on.

I am glad you feel some better. Life is good, when you can, without a nap, take the dog to the beach on a nice sunny day. C.

 

 

 

 

 

-- Edited by Canuck on Thursday 18th of August 2016 12:29:48 AM

Canuck wrote:

---

Jaded,

If I was you, I would be celebrating!! Your recent check-up and results show (not only that you are very UND!!!!, that you ARE improving (as nothing was was showing up as worse). I lean to the belief that your hardness IS decreasing, based on your decreasing fibroscan result. Exactly how much is debatable. That's the trouble with science - it's often just good guessing. The tools arrive at likelihoods and combined approximations that we deduce from. I bet your hardness HAS decreased, it's just that it is open to interpretation as to how much of a reduction in hardness you have had, as indicated/suggested by the lower kPa number of your fibroscan. The other good news is that your doc, like mallani said, sounds good, attentive and you will be well followed by him. All very good things. 

I like mallani's take on his modest, cautious, evolving, objective, safe self-assessment (coming from his prior 30.5 kPa score, he who went through hell and back to get und) - he said - 

... I now prefer to think I'm a cirrhotic, who's not getting worse and who may be improving." ...

Keep in mind you have ONLY HAD 2 fibroscans (for comparative purposes 18.8 kPa pre-treat, 2 1/2 years ago, and now, post-treat showing 8.8. Over time, and with more and ALL progressive, accumulating and combined assessments you will continue to be able to see/measure your improvements better. I would celebrate this one!, and every day following, as you improve!

Here is my pen-pal's story of possible marked fibrosis reduction. A GT3a for decades, he desperately had to buy his own Indian generic supply of Dacla (just before dacla came more easily on the market), he did get some help tho obtaining sof through his own country. I admire his bravery and resourcefulness, to get himself treated, it was not easy, nor was treatment as easy for him as it is for others as he did experience some sides, which eventually he got to the bottom of. He chose a 24 week course of sof/dac, as it was the recommendation then, and he was deemed F4. During the 3 years prior to treatment his VL got as high as 14 million. ALTS ranged 90 - 130. 

His fibroscans - about 3 years pre-treatment - in the 7 - 8 range

                      - about 1 1/2 years pre-treat - fluctuated 18, 10, 18

                      - 11.8 about SOT (<15 at 4 weeks, UND at 6 weeks, ALT normal at 6 weeks)

                      - 9.3 at 12 weeks

                      - 4.7 at EOT+24weeks (Still UND and normal bloods)

So you can see, he had a fair number of fibroscans, period, and, how fluctuating they could appear, but there are many variables to be considered that could effect different and differing fibroscan kPa measurements. He too was suprized and happy to get his last 4.7 reading. His doc expressed amazement as well.

But he will be getting more fibroscans and follow-up, as he improves. He is doing very well in all ways BTW. It will be interesting to see if he continues to demonstrate these very much lower (down-trending) fibroscan scores consistently over time now!

I, for one, will look forward to my next fibroscan score! I will take it with a grain of salt, and not in isolation.  C.

 

---

 Thx for your post. Yes indeed everything is improving. I wanted to believe as many people still wrongfully do (in my opinion) that the fibroscan measures fibrosis and can be used to grade fibrosis and determine cirrhosis or not. It doesn't...it measures hardness and cannot distinguish the difference between hardness caused by inflammation which usually does diminish somewhat after SVR...or hardness cause by fibrosis. To the fibroscan machine...hardness is just hardness. My immediate reaction to my 8.8 F2 reading was...'I'm not cirrhotic" and I guess that's what I wanted it to mean. There is and was never any real basis to grade fibrosis with a fibroscan machine and I don't know how that ever came to be. Maybe that is why the cost of the scan is not covered by BC's insurance plan.

The opinion that these fibroscan scores meant anything at all came to me from reading posts on this site. But when I look back now I realize my Dr was trying to make me understand that the score would not really determine cirrhosis or not...I just couldn't understand why at the time and when my score came back as 8.8 I didn't even want to understand. But a few days later it all set in. I also believe that a biopsy has to be pretty hit and miss. Right now I think the biggest indicator...at least for me is my spleen size and blood platelets (or lack of). And with all that being said...I feel better now then at any point in the last few years and I'm undetected for the first time in 20 years or more probably. I'm turning into an old man and feel I will become an older one yet. I will enjoy what I have and we we see what time brings. As of recent I can go with much less sleep than I was needing only a few months ago and things are pretty decent. I'm OK for now...NOBODY knows about the future regardless and I feel reasonably optimistic about it.

 

Yup...it's a sunny warm day. I will go take my dog to the beach for a swim. It's so easy to get lost in hopeful thoughts regarding this fibroscan thing...I been seeing this for some time now on here and began to think it was the ultimate test (or I guess wanted to believe it meant more than it does). There are to many other factors regarding cirrhosis to know what is really going on no matter what you do. I will continue to take the best care of myself as I can and stop thinking about all this for now. My best to you all.

Tig56 wrote:

---

Hi Jaded,

I'm not sure your graph provides the same information that your results indicated. Yours indicated 17.2 cm in it's maximal dimension. Were yours to be smaller than normal as you interpret yours to be, the final report wouldn't indicate splenomegaly or enlargement. Your report does show no additional enlargement from your previous scan, so that's good to see. 

Here's some additional information to review. 

"The normal spleen size on sonography in adults is about 10 to 12 cm in length. However, a spleen size of about 12 cm is considered the edge of normal; thus, it is al- most impossible to image the entire organ with a sector or linear array transducer."

"A spleen weighing up to 500 grams (1.1 pounds) or between 11 to 20 cm (4.3 to 8 inches) in its longest dimension is considered enlarged. Splenomegaly greater than 1000 gm (2 lb 3.3 oz) or longer than 20 cm (8 inches) is considered severe or massive."

Enlarged Spleen Info

verview">Splenomegaly

---

 Thx Tig...I removed that chart because I later noticed it was not in cm's but actually mm's...I had a never mind moment about that. I noticed that comment to about my spleen being the same size also...I guess it's been enlarged for some time which is consistent with cirrhosis and low blood platelets due to.  So...I won't celebrate my F2 score anymore...it was fun while it lasted though (3 DAYS).

mallani wrote:

---

Hi Jaded,

I can understand your confusion.

I now have some reservations about FibroScan. My pre-treatment reading of 30 kPa was very high. A previous biopsy had shown moderate fatty liver. This increases the FibroScan score. Also, my enzymes were pretty high at the time of the FibroScan. Probably I was experiencing an acute flare, as happens in chronic HCV. This would mean increased inflammatory cells which again raises the score. My real FibroScan score was probably closer to 15-20.

3.5 years later, my FibroScan score is 8.6 kPa, and biopsy shows F2-3 with no nodules.

My recent Ultrasound showed mild increased echogenicity, no nodularity, a smooth liver surface , a much smaller liver (now normal) and a normal spleen. To me, this suggests that I still have plenty of liver fibrosis, and think the F2-3 staging is not correct. I now prefer to think I'm a cirrhotic, who's not getting worse and who may be improving.

I will continue to monitor for HCC and urge you to do the same. A contrast MRI is very useful to have on record, so further studies can be compared.

With a spleen as large as yours, I would want an endoscopy to make sure there are no varices.

Your doctor sounds very good. Cheers.

---

 Thank you for your comment...I always feel better when you do so. I had an endoscopy 2 years ago and all was well. I asked my Dr if I needed another one and he said no because all was good with the 1st one and now I'm SVR...now I'm not sure if that was right to have decided by him.  I will be monitored as my Dr suggested every 6 months for the the rest of my life. I didn't know my spleen was large...now that I think about it I asked the technician if it was during the ultrasound and she said for my age it was in range but I see now after searching it should be 12 cm give or take. I believe this why my blood platelets are low (just below normal around 144). I am realizing that the enlarged spleen is an indication of cirrhosis in itself and likely a greater indicator than my new F2 8.8 score. I always felt that liver hardness could be cause by blockages and inflammation that might be resolved to notable degree with SVR...lowering the fibroscan score even with the fibrosis not having changed...I posted this several months ago. I asked my Dr if an improved fibroscan score to F3 or F4 was cause for celebration and he was not reassuring of such. I think I may have wanted to believe the F2 score was a resolution of cirrhosis a little too enthusiastically...now I just look at it as a positive sign but I don't think I will ever know what to think when it comes to being cirrhotic  or not.  As you can see I've edit this post a few times...I am having many different thoughts since my initial post.

 

 

-- Edited by Jaded on Saturday 13th of August 2016 05:45:24 PM

-- Edited by Jaded on Saturday 13th of August 2016 06:04:30 PM

-- Edited by Jaded on Saturday 13th of August 2016 06:09:12 PM

-- Edited by Jaded on Saturday 13th of August 2016 06:16:29 PM

-- Edited by Jaded on Saturday 13th of August 2016 06:46:02 PM

-- Edited by Jaded on Saturday 13th of August 2016 07:43:46 PM

Hey Jaded

Thanks for the post, it's give great encouragement to all us Cirrhotics or should I say previous Cirrhotics.

My take is that the medical world need to create a new classification of previous Hep-C induced Cirrhotics patients that have regerated parts of their liver.

The liver is one of the very few organs in the body that can re-grow or regerated itself Given the right circumstances.

matt 

There aren't any rules, all's fair in love and war (and Dragon killing)...

Speaking of Watermelon

 

Ultra Sound:

Laying in bed in a dark room you glance at the chair in the corner. Clearly there is something there. OMG it looks like a man sitting in the chair just starring at me!

Fibro Scan:

Now I am lying here and the room is no longer dark. I can see the chair in the corner pretty good now. OMG I can't believe I let the laundry pile up like that!

The one tells you it is a good idea to take closer look. The other tends to confirm what you are actually looking at.

 

DISCLAIMER: I am JimmyK and a Biker for crying out loud. Bikers don't do laundry and therefore are not the responsible party in the Fibro Scan example. Clearly that is the job that is.... hold it a minute.

Carolyn did you say something?

Oh ok sure right away.

<sigh> I can't play right now. <sigh>

JimmyK

 

-- Edited by JimmyK on Friday 12th of August 2016 09:40:27 PM

I think Malcolm would be better suited to answer this, hopefully he will check in and shed some light on this. 

Routine ultrasound isn't a good indicator of fibrosis, the Fibroscan ultrasound is more accurate in determining that. The routine ultrasound of the liver will show shape and contour, masses, etc., and as your doctor stated, it's not a good modality in determining fibrosis. The nodular contour can be the result of the cirrhosis and the scarring will take a long time to resolve, if it does. That doesn't mean your liver isn't regenerating and your previous Fibroscan is indicative of that.  

A Fibroscan can also provide various results depending on the area pulsed. A technologist can test multiple sections and depending on that specific region, reach different results. You could also request an MRI or biopsy to determine fibrosis if you are questioning the validity of your Fibroscan score. One thing I have come to see is that fibrosis regression and liver regeneration takes time. Follow your recommended U/S schedule and switch it up with a different testing method. Let your doctor know how you feel and see if you can do that next time. It isn't an unusual request.

I tend to agree with your doctor. The only abnormality seen was the echotexture and contour. In your case, that's not necessarily abnormal and s/he doesn't believe it to be something to worry about. 

So I emailed my Dr and asked...

Can you please clarify something for me? My ultrasound report comment of "the liver has a coarse echotexture and nodular contour in keeping with the clinical history of cirrhosis" has me confused. Does this suggest cirrhosis F4? It seems to contradict my fibroscan reading of 8.8 which you told me was F2...

and he replied...Yes - the US results are consistent with cirrhosis as expected. The nodular contour of your liver and the coarse echotexture may persist for life, even as the liver regenerates. This is typical of what we see, even when liver stiffness improves. I wouldn't call the results contradictory per se, it's just a difference in technique, modality, and interpretation. Everything looks good. US is not the best tool for assessing fibrosis. Nothing to be concerned about.

I then asked...

I see...so is it possible to continue to regress to say an F1 or even F0 and still have nodular contour and the coarse echotexture...and not have cirrhosis? I'm confused because I see on a support forum many people who have regressed to F2 fibroscan from having been F4 and were previously cirrhotic...who say that now at F2 they are no longer cirrhotic.

To which he said...yes.

I'm confused because some people on here who regress from F4 to a fibroscan score of 8.8-F2 say that they are no longer cirrhotic...but he does not see it that way.


**EDIT**

This what I have since been able to find in my search...

a) A nodular contour of the liver indicates the liver is "lumpy"...not really surprising considering I was previously/recently F4 18.8 fibroscan score.

b) "Echotexture of the liver describes the relative level of echogenicity (ability to bounce an echo) of a structure" It goes on to say that a Fatty Liver will bounce more echo's then a healthy one...I believe that the fibroscan of 8.8 suggests that I don't need to worry too much about that because the test is based on echo bounce?

I think everything is pretty good...or minimally much better so I won't worry about this. But I would appreciate feedback from people who have regressed from F4 to whatever stage they are at on the opinion of my Dr who stated that cirrhosis remains a factor regardless of stages of regression...I'm still very confused about that.

 

 

-- Edited by Jaded on Friday 12th of August 2016 05:02:54 PM

Hi jaded,

no sorry I can't shed any light, in an educated medical sense,  but it sounds like absolutely fantastic news - your liver has improved amazingly in only two years time. Surely that's the only thing it can mean. 

My own liver is in a very dodgy state. I am still waiting for post 12 week blood test but stories like yours make all of us happy.

Syd