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Post Info TOPIC: A few hours of panic


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RE: A few hours of panic
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Hello Malcolm! 

I must say it`s great to see you around again, I`ve just been catching up on your posts, but I`m very sorry to hear about all this new worry that`s cropped up at this point.  I can only imagine your state of panic, not good at all!

Thankfully you`re up to date and knowledgeable enough to make some sense of  these results, and because of your medical past you have access to the latest equipment, but I`m sure it would be extremely confusing for the average non-medical person. 

Wishing you all the best, and I hope in the meantime you`re out there enjoying life with your wonderful family around you. 

Please do keep us updated... smile

 

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Mallani,

So.  Biopsies of segment 8 are not possible?? Can't rightly recall where your last series of biopsies (or any of your biopsies) were taken from, but it was just my dumb faint-hope-clause that something simple and non-dire could explain it, like evidence of a bleed/old bleeds/calcified bleeds, scarring from this (or just other scarring period, aspects of cirrhosis) might present/looking like "lesions". I think most people equate the word "lesion" negatively. Rightly so, as it is the case sometimes, no one wants a lesion, or a tissue "change"/aberration (noted broadly as a lesion), without getting to the bottom of what caused it. Necessary to attribute causation to a change exhibiting itself as a lesion. Not all lesions are dire things.  All I know is that lesion is a broadly used term. All sorts of lesions, I think, are often found at less deep/on more superficial aspects of where they live, and, until a reason for them can be determined, a lesion is just a lesion. A lesion without a reason, just IS. It's a concern necessitating getting to causation, especially so, in the livers of our HCV/cirrhotic population.

So, the 2 lesions in segment 8 are unknowns? And you bring up the historical difficulties in imaging things in general (old/new MRI?s, old/new U/S's), you detailed the difficulty in imaging (over the years) the old hemanginoma you sport in segment 5, so ... what about something as simple as further (more recently developed) hemanginomas in segment 8? Can/does a benign hemanginoma present as a "lesion", looking much like the new lesions you saw? What imaging presentation did your old hemanginoma in seg 5 have in the past (you said the old U/S missed it but the old MRI's caught it). What does your old hemanginoma in 5 look like, now, on MRI/U/S, compared to the "new lesions" in seg 8 seen on recent U/S - any similarity in image presentation - all just look like lesions, any similarities? Could it be possible that your newly imaged lesions in 8 represent more benign hemanginomas?

Knowing the little I do about hemanginomas, I think I would want the reason (as to why I had pictures of liver changes presenting as "lesions") to turn out to be hemanginomas. They are supposed to be a tangle of blood vessels, whether skin or other organ, they are often not too large, or, not enlarging, they can be non-problematic and are generally notoriously benign, are they not? We can pack them from birth or discover them later in life, if ever they get discovered. Can hemanginomas present initially on imaging as lesions, and be loosely referred to, as "lesions"?

Funny, (not) that you and wmlj both own hemanginomas! Found more in HCV cirrhotics, but, maybe found in this population more, just because we are looking at this populations livers more closely to be able to discover them in the first place?

Glad you added about your good AFP, I don't think I saw one in Mike's labs. I hope I am reading his MRI correctly that his lesion in segment 5 has been determined to be a hemanginoma. RC has had a history of fluctuating AFP's. My only other AFP (pre) was 10, just over, (post) it is now 4.  (BTW - how valuable are LDH's?)

Could metformin possibly result in liver lesions? How could metformin possibly aggravate a liver or  cirrhosis so as to effect/explain a rise in the ALT/GGT? Don?t know much about this metformin stuff, but I?m interested in it.

Lots of things can make a GGT increase, including just having diabetes, no?

I hope you and your docs get these lesions figured out, and why your ALT/GGT increased. Please let us know. C.

On edit: Scrub the bit about me questioning the metformin - I just caught your update in the other thread about only being on it for a couple weeks.



-- Edited by Canuck on Saturday 13th of August 2016 08:56:02 AM

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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Good to hear from you Malcolm although I wish the report was a bit better. But it could certainly be worse and I know you are right on top of taking care of it. I just had my 6 month MRI last week that shows a 7mm lesion and I'm scheduled to talk to my hepatologist about it tomorrow. So you are right..."Back to the grind"....



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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Hi guys,

Thanks for all the kind words. Good to see the Forum remains as it was, supportive and caring.

Naturally I'll be getting a followup US in 3 months, using the same machine, Sonographer and probes. BTW, my AFP is 3.

I bought my first Ultrasound machine in 1979. Since then, the improvement in imaging has been dramatic and continues.

The lower the probe frequency, the better the penetration but at the expense of resolution. In me, a 10 mHz probe penetrates about 1cm into the liver- the new 8 mHz penetrates about 5cm, so the lesions seen are fairly superficial. No biopsy gets to segment 8.

In about 2004, Ultrasound failed to detect a 12mm haemangioma I have in segment 5, close to the junction of liver and stomach. It was very clear on CT and MRI, so I had MRI followups for the next 8 years. In about 2012, the new Ultrasound machines showed the haemangioma well, so I went back to just having US. Contrast MRI, particularly with the new contrast Primovist ($400 an ampoule!) is the gold standard for detecting small liver lesions.

Cheers all. Will keep you posted.



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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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Hi Malcom

That must have quickened your pulse.  Must be hard being a doctor, not least a radiologist, and having scans done!

Hope it turns out OK...at least the worse case scenario has been ruled out.

Pablo



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.

Tig


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Hey Malcolm,

Good to hear from you. That must've been a startling result, it was for us to read. I'm glad you've got the resources readily available to get that sorted out and ruled out quickly. Goes to show us all that HCV isn't a disease to be taken lightly at any stage of our recovery. Those of us with advanced fibrosis must continue to have the recommended followups.

It's nice to have you check in. I hope you're finding time to enjoy yourself, in spite of the recent developments. Let us know how things are going and tell Lani hello from all of us. Good luck!



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64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 7+ years!

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Very odd indeed and we know you will get to the bottom of it! Keeping you in my prayers. 



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Hi Malcolm,

Always great to hear from you, sorry to hear of this latest though, very upsetting to say the least.

The viral load is huge relief, no doubt I hope they figure out what the nodules are and that they are benign.

Sorry to hear of this latest, we all send best wishes your way.

Please do keep us posted on anything that you find out.

 

Dave



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63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 



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Greetings,

While literally too busy to post here lately, I am not too busy to take the time to send a prayer your way for continued good health and progress.

God Bless.

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

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Glad to see you back but not under these circumstances. Please keep us posted as you know you have many friends here.

Take good care.

SF



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65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *



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Mallani, so sorry you are having to go thru more drama and worry.  RC and I definitely know what that is like.  Your post just proves that those of us that have had HCV 40 + years still are at risk for things as we get older and that all of us MUST be proactive with follow up imaging.  I for one have never had an MRI as they said fibroscan good and  U/S said not cirrhotic....but makes me wonder now.   That is now  at the top of my list to ask about.  Thanks for sharing and please keep us all posted.   Have missed you and send Blessings your way.   Chris



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F 63,  1b  1974, no cirrhosis, fibro scan 5.8 F0-F1,fibro test .37 ,V/L 702987, ALT 90, AST 75.  ABBVIE Topaz II on 10-30-14 Viekira Pak no RIBA , EOT 1-22-15 SVR, ALT 37, AST 29, 4-15-15 SVR12 - fibro test .22,  1-21-16 SVR 52 ,  1-21-17 SVR 104! 1-21-18 SVR 3 years ,2020 5 years



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WOW. Mallani- What a shock!  All the positive results you have had in the last year or so, dashed by one U/S?  They are pretty small at this point, watch them closely as you know, and biopsy before they hit 1.5 cm.   I have had several MRI"s and lesions seem to come and go in my liver, well I dont think the just disappear, small leasions in a cirrhotic liver are well hidden by the cirrhosis. Your in my thoughts, take care!!  RC



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 M-64) 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   



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Lovely to see a post from you - BUT not like this!

Horrors - I'll say!

Nice you have fast access to these diagnostic tools, at least a better chance to deduce and unravel the likely's/unlikelies as quickly as possible as to what is going on. At least you had some verifications within hours/the same day.

Very shocking, unexpected, and alarming it must have been. And still, an unnerving, really unwanted mystery.

You WOULD be the very best person I could think of to objectively consider all the imaging, labs and new meds/conditions, to formulate the most accurate guess. It's just harder, when it yourself (I think). I think you and your doc are already bumping heads in the right direction(s).

Metformin eh? Been wondering about that stuff. So, 2 "new" things you mention, metformin AND the "new" U/S, hmm.

Wondering about the "new" U/S, only because it is "new", did your hep doc have an opinion on what the "new" U/S could have been showing? (if tumour was ruled out by the subsequent MRI? Did you two discount the initial fearful impression the U/S might have been indicating, by the added info of the MRI? Echolucent areas - light/dark, what did SHE think (your repeat U/S lady with her "new" machine), and what did HER U/S interpreter write on your report for suggested interpretations??

How superficial or deep can these U/S show things??? The "larger" dimensions you mentioned did not really jive to a relatively short 6 month timeline growth span for "lesions"/ tumours, did they? Had they been HCC (of those dimensions now), would we have not expected a smaller version of it to have shown itself 6 months ago, at the last/prior imaging?

Just wee, old, fatty, kinda hard livers (like mine), showed steatosis with areas of sparing in light and dark, difuse and not so difuse (echolucent), so, are not especially dense, cirrhotic, fibrotic, scarred/sclerosed bridged areas also going to be showing up especially light/dark (echolucent). You know these things, I do not. U/S's can "suggest" limited indications of all kinds of "this and that" can they not? Do they really show depths or superficials? U/S's can "possibly" indicate many things from lesions, cysts, tumours, scarring, atrophy, hypertrophy, strange effects of vasculation, no? But if U/S's are a limited look, so too must be their interpretations? Thus the good idea of the additional info a contrast MRI can offer when coupled to an U/S? How often do you have (or have had) the MRI's?? If all your prior MRI's were timed, in tandem, coupled with your prior U/S's, and nothing like this showed in prior, then the odd man out is the "new" U/S - it doesn't exactly add up - why i question what the "new" U/S sees. Same MRI machine as priors?

Was section 8 where any of your prior biopsies were? What about something as simple as some biopsy bleeds/damage? Tig's an U/S man isn;t he?

No other labs out of wack?, other than what you stated, and that reference to diabetes for which we might assume the metformin was about? Will really appreciate knowing what you and your docs figure out. Sorry that worry landed on your plate. C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Geez Mallani.  This is a mystery.  I wish I could solve it, but it sounds like your determination will. I'm sure you will hear from others here who know more about this than I do.  

I just wanted to say that I'm sure glad you are undetected anyway, no longer cirrhotic and taking action. How are you feeling?

Best wishes to you on this.

Cheddy



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GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



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Hi guys,

It's been a while since I posted.

I had my 6 month F/U Ultrasound for HCC last week. I've had the same Sonographer for 10 years so she knows my liver well!

Using the latest GE machine and a new 8mHz probe, I was horrified to see 2 lesions in segment 8. One measured 13mm and the other, 8mm. Both were oval, well-defined and rather echolucent (just like HCC's).

Standard ultrasounds are done using a 3.5 and 5 mHz probe, with a 10 mHz probe for the liver surface. The 'lesions' couldn't be seen using these probes.

Luckily, this was my old practice so I had an MRI done in 3 hours, by shuffling some poor souls. I also had the post-contrast scans done using PrimoVist, a new and very expensive contrast agent for MRI's.

The segment 8 lesions could not be seen. No evidence of HCC. Review of my previous MRI's didn't show anything odd in this segment.

So, my panic was over, but what are they? They can only be nodules with an odd blood supply.

However a liver biopsy 4 months ago didn't show any nodules, so I was called 'no longer cirrhotic'. I'm now starting to doubt my non-cirrhotic status.

So, off to my Hepatologist for his thoughts. He did some bloods, and to my horror, the ALT had doubled to 80 and my GGT was 120. Viral load was done to pacify me, and the results came back today, still Undetected.

He can offer no explanation, other than I had just started Metformin for my Diabetes. (that's another story).

So, back to the grind. Cheers all.



-- Edited by mallani on Wednesday 10th of August 2016 12:23:47 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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