Hep C Discussion Forum

Yeah Tig, 

I feel like a Klingon and I just did battle and still waiting for the end results, as we both are suffering battle wounds.  Those damn Klingons don't fight fair.

I feel the same about the Thai docs using a different scale for their fibroscan machine and/or it was a new toy at the hospital and they were using me to learn on. 

Long time no hear from you old friend.  Hope that all's well. 

Meanwhile, a new and frightening twist in my war is that this last Sunday night I couldn't sleep all night because of  terrible 'heartburn'{?} in the same location as my abused liver and after a sleepless night I got out of bed with the same kind of pains that I had post RFA and almost went into emergency, but decided to wait it out because I have an upcoming 'teleconference' with my VA liver specialist on Thursday.  Maybe a bad move on my part because the pain is still with me and hopefully hasn't done any more harm but I just hate drs, hospitals and especially emergency rooms. Hopefully he will have an answer. or at least order imaging done to see if all's OK.

Could it be a recurrence or flareup of my RFA procedure, as the sharp pains radiate from the area that was boiled by RF 2 weeks before.........dead center between my naval and the bottom of my sternum......maybe closer to my sternum. Pains aggravated by simple movements that involve my lower middle torso like bending, lifting, walking etc and very sharp pains when I touch that tender area under my sternum. 

I'll continue to search for the fibroscan doc and post it when I find it.

Makes sense, he planted the tracer at Tace and had you pre-booked for the ablation the following week - as per "plan". 

Ya, when we had been discussing this 3.9kPa number before, I did kind of doubt Thailand had a "dif" scale to use for a standard fibroScan machine - they seemed to develop these fibroscans right from the get-go all manufactured with the same universal scale-use in mind (kPa's that convert into the F0 to F 4 scale).

So, it's hard to say from so long ago, without "paper" what old fibroscan test found then. But good, you were followed with US and other stuff prior to HCV treatment and then after as well.

I am sure your current docs must have, in their files, "blood" fibro-Test type results (or other methods) for deriving your degrees of fibrosis over time. I am sure in their files on you, they typify you as being at a certain Fscore (between F0 to F4). They may have tests in there called acti-test, apri, ELF fibroSure/fibroTest, etc., even your recent liver biopsy should have details on your Fscore/inflammation ratings - it not likely they took that tissue sample and only looked for tumour cells and nothing else, there is likely a F score and inflammation rating and other info derived from that biopsy. Of any of the fibrosis tests that you may find in your docs files, the terms you are looking for will be ....  "F" (0-4) for fibrosis, "A" (0-3) for activity/inflammation, and perhaps "S" (0-3) steatosis/fatty liver. Your imagings, and records associated with your imagings, may also allude to Fscores and other various liver associated conditions.

I suppose really, the most important time period to know about is the NOW/current Fscores (after SVR to present). I think the newer stuff is the most important right now, and then going forward, so you have something to compare back to, not necessarily important to know the really old pre-SVR  stuff right now, as that may be very hard to ascertain now anyway.

When you see your gal for the appointment, ask her to scour your file for you, for her to tell you what all your Fscore levels have been in there, and ask if she can give you copies of all thoses tests (everyone of them, if she will!) that have been determining your fscores. Just tell her you are well aware you had the tumour development, what you have NOT been kept aprised of, is your precise levels of fibrosis (fscores) over the years, and that you would like to know these things for certain. She might make it easier to gain some certainty in how they are typifying you on the fscore scale. 

Fog is awful, I still have some, worse when tired, so, rest/self-TLC IS required, I tried/try to develop alternate tactics to combat it or just to "get around" it.  C.

VetwithC wrote:

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Hey Canuck...........

Wow, you seem to be a walking talking Dr and I appreciate and patience  and your input........ (Ha, ha! Your funny Vet, Ya, ya,  like anyone can't crack mr. google open, I really shouldn't be doing all that mr googling, scary mumbo-jumbo in there - kint hep mysef, I am just very interested in all of these things, so I poke around in areas that i really know nothing about - it is such an interesting study - all of it, from the wonders of the liver to the diseases that befall us, reading about how we work, or don't work!)

 

Clarify for me again please (sorry) - How long ago did you have the Tace (date), and date of RF ablation?

I got the TACE on 09/13/17 and the RF ablation on 09/22/17 Wow - now that's interesting (to me)! Between Sept 13 and Sep 22, that was only about 10 days! Hm, THAT must have been VERY on purpose, both procedures beng so close together! Not likely they did any let's-lookie-see how-have-we-done imaging (post-Tace), between the 2 procedures. Perhaps no deliberations were required based on visulaizing (imaging) as to what effect the Tace had, before moving on to ablation - doing both had been the foregone conclusion? - pre-planned, for both procedures to be that close together? Prolly imaging available with your "image-guided" ablation anyway, a mere 10 days later.

the tumor biopsy was done on  06/30/17 and my original HCV biopsy was done about 15 years ago in Thailand, where I was first DXed with HVC.  I only had 1 fibroscan done and that was in Thailand. I'll have to dig deep in my rat's nest to get the results, but if memory serves me right, it was just below cirrhosis and I think it was 4 years ago.  My little island in the Pacific didn't have one until last year and altho I have requested it, they tell me that it's not necessary.........I'll be more demanding if you think it's necessary.  Ya, I seemed to recall we were discussing that from our prior past posts (orginal biopsy and fibroscan in Thailand) and you had been trying to recall the fibroscan Fscore "number" from back then, you thought it might have been 3.9 Kpa's but this was too low to jive with what the Thailand doc was inferring about possible cirrhosis. Old records may never be found or be had, do not bother searching, It was only IF you had a hx of fscores you could easily follow (by bloods or fibroscans) to see/know how the fibrosis levels have been over the years. 

As to my AFP's, they have remained in the normal range since SVR and I'll have to dig deep to get them pre TX. That is good to know, that at least a certain number of AFP's have been done since SVR, and that they were not showing any spiking. Don't dig too much for the pre-SVR AFP's, it is enough to know that they have not been spiking since SVR. From the SVR to now, you must have had a least a few AFP's done? You did say that ALL your bloods were normal, so that is very good that they were. And in my book, AFP's would be included in the good "following" of you, but i cannot assume they were done.

Also can you re-iterate what you have had done for ongoing Fscores, bloods (FibroTests) and the like, and/or FibroScans - what have they been running at? - I forget, I think you did initially have an HCV biopsy way back when? (and then of course this recent more-HCC diagnostic biopsy), but how has the hx of your fibroscores been again?

 

I do have an upcoming appointment with my VA liver lab [nurse practitioner] next week and she is often more revealing than the Dr's. You could always ask her - what exactly IS in my chart - as far a my "official" fscore right now (and all and any of their past recorded fscores for you, over time) and get those copies of those fscore labs (just for your own reference at home), also, ask how many AFP's you have had done in all, and get those dated results too. Good things to know, to review and keep tabs on. Fibroscans are just an "easy" way to help keep tabs on fscores over time - it's a bit of underkill now, with all your more important imagings and current info amassed - but as you get further along out of the "scare-zone", and back to "normal" periodic folllowing (which will no doubt) include imaging, and blood method fibrosis estimations, it does no harm whatsoever to have fibroscans done as well. If it were me, I never like to rely only on only one blood method of guessing at fibrosos levels, multiple methods (all regularly repeated) are good.

Since SVR, with all the "routine" imaging you have had done for "normal following" of a post-HCV person (before the tumour shat hit the fan) - did not any of these "prior" radiology reports express "notations" pertaining to seeing evidence of any fibrosis/cirrhosis or any abnomality seen (other than the recent tumour now)?

 

Thanks again Canuck and sorry for my lack of details. YOU are providing EX-CELL-ENT details!! You should see my house - it is an example of how I have to make "details and recall" work,  I have files and files and piles and piles of health papers, all over the place - if I do not have it sitting in front of me, and force myself to find it and re-read it,  I would not be able to recall my name with any certainty! - thank god for my partner, my human timepiece/calendar who keeps track of pesky time-consuming details such as math, dates, time, what we ate last, appointments, traffic lights, etc.  His list is long.  C.

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Just google up falciform ligament ... 

our falciform ligament basically divides (is located between) the two liver lobes, without further description by the radiologist, i could not pinpoint where (exactly) it is located (anywhere along the ligament structure), but he did note the "left"  lobe location and it being close to the ligment, as well as seeing an increase in size from last imaging - increase in size is commonly what IS seen that prompts them to do further imaging, following and or sussing or treating. Someone may have somewhere, sometime written down the exact liver section to better identify it's exact location - but THEY get to see the actual images and it's location can go without "saying" via an image, as they can see where it is.  This is why I always get copies of my own U/S's, CAT's and imagings (via requested CD's), even if I have no expertise to decipher it properly - I get a better idea (between the written report and seeing the images for myself). I did not look this up ... "[coronal21, axal 9]  " ..., but this could be the better indicator of location. AFP's (as mentioned before) and any other abnormal or elevated bloods are good things to follow as well, all of them to be taken into consideration, what your AFP's were running at prior to HCV treatment and after and then all along. AFP's can (sometimes) elevate with HCC, not always tho. Other bloods may hint at something going on as well. Imaging is number one, AFP's (in my book) pale as a convenient potentially important 2nd clue.

Clarify for me again please (sorry) - How long ago did you have the Tace (date), and date of RF ablation?

Also can you re-iterate what you have had done for ongoing Fscores, bloods (FibroTests) and the like, and/or FibroScans - what have they been running at? - I forget, I think you did initially have an HCV biopsy way back when? (and then of course this recent more-HCC diagnostic biopsy), but how has the hx of your fibroscores been again?

Hey, that is ALWAYS a good thing, to have a radiology friend!! Might come in handy.  .

Slow and steady as she goes bro - just keep treating yourself with TLC, stay on 'em and make sure you get timely follow-up/imagings. I

Like I said, I think you dodged a bullet, and will get the confirmation soon. C.

Not "in limbo" (per say) for a couple more months, know that you have probably just suceeded in dodging a big bullet! (did you see my last post with comments and ques. in it?)

Sorry about the unsatisfactory doc and his appointment with you - you did not get much satisfaction out of your visist with him on any levels. BUT, you did say the ablation WAS only just a couple weeks ago, right? And I still don't know how long ago your Tace was (and I don't know either if you had any imaging after that?) - I still don't have that timeline down straight (how much time elapsed between the Tace and then the ablation) - but, regardless ... some people do not even get the opportunity to be Taced and glean the benefits of same, some go straight to ablation only and have ablation only - you have had the benefit of having both Tace and ablation! Your docs, in their best thinking have really maximized it to your favour - and I have not heard of anyone who got post-ablation imaging done earleir than one month after procedure anyway, some (I think) waited longer! So, know that it well may be just a bit early for the post-ablation MRI to be done and to hear the feedback you are wanting to know right now.

You can "kill time" by following up (repeatedly) with the onc and/or any of your docs to get it confirmed/verify that the that onc HAS filled out and requested your MRI (in an effective timely fashion) for next month (to ensure he gets it done) - once you verify that the MRI request HAS been put in - then you can also follow-up (yourself/directly) with the MRI facility to make sure your date is booked ASAP. This time (between when your ablation was done and when your next MRI is done, and the lag between seeing your onc. again in Dec) is not wasted time either - (1) you are healing up the Tace/ablation area  - (2) you are babysiting the booking of your MRI to ensure it IS done with, NO preventable delays - (3) and while you wait for the MRI, you can contact the MRI facility and learn how to request your own radiology report from the MRI facility (usually the day you are there for your MRI you can fill out and give the appropriate dept your written request for the radiologists interpretive report be sent to you, you just need to know how they tell you to do it - they will have a system and protocol for that, may be complicated, or not!). You will likely be able to read and know the the radiologists report from your next MRI (the radiologists interpretive impressions of what he sees), before you even get to the onc.

I was also asking about labs along this journey - you could also be collecting up (all and any) labs you have not yet been privy to, and seeing what they have been testing you for and comparing all the ongoing results, as far as bloods, LFT's, LDH, AFP - whatever they have been drawing on you, from pre-procdures to post-procedures. These may also provide bits of ongoing info for you, while you are waiting.

Hang in there, they and you are all doing the best you can! I think you will soon get the confirmation you are looking to hear.  C

Hey VwC,

yes, it was funny, after I finished treatment I felt better and a lot of my symptoms lessened drastically but I never felt 100% better. 

It was an elevated blood test AFP that alerted the Drs to order the CT scan that first showed my tumour...

After the tumour got zapped, I really did start to feel better. (It took a few months)

I still deal with other HCV caused issues (crappy immune system and peripheral neuropathy) but i havent had a migraine since, and I definitely have more energy most of the time. After 33 years of debilitating sickness now I feel pretty darn great, and those other issues are more annoying than frightening. I too have cirrhosis , Im really hoping it will reverse somewhat.

As far as communicating with Drs...grrrr thats a pet peeve of mine too.

The way I found out I had a tumour was some gatekeeper calling to set up a time for ablation therapy. 

Can you get your Drs to photocopy the report for you to have a copy?

Thats what Ive started doing with important reports/tests. I get the lab to CC reports to my family Dr and she copies it for me.

Alison

Thanks all for your input............I'm a funny kind of guy that the Drs hate because I just wanna know the mechanics of my physical demons especially since they are invading MY body.  Seems that most of the 'almighty Drs' have a well rehearsed routine just to get you in and out ASAP and on to the next patient or the golf club.

they did check my viral load several times post harvoni and has been consistently down, but I think that my liver was too far gone [into cirrhosis] that I haven't returned to a normal 70 yr old in terms of fatigue, brain fog etc. 

Observer.......

mind you, I think my tumour was smaller than yours.

My tumor was discovered at 15mm, but during the wait for surgery it grew to 25mm[+] and I think that the cut off point for successful TX is 30mm

Do you have marks on your thighs from the grounding pads? I had them for a few months before they faded. The wee stab wound from the microwave catheter thingy healed quickly and didnt cause me much worry.

Didn't notice any battle scars except tor a small needle point with a larger circle around it.  Never thought to check my thighs.  No pain on the skin, but my guts felt like they had been boiled and was painful for a week or more.

Alison, did your fatigue and mind return to normal??

My biggest complaint about the whole procedure was the lack of communication from the Docs on weather it was successful or not. Hopefully tomorrow will tell, but still haven't received any more imaging. Hope to schedule that tomorrow as well.

Hi VWC.  Your learning that you need to be your own advocat. It seems that todays medicine can be more focused on quantity and less on quality.Thats not the case everywhere, but seems to be the trend nowadays. Its good that your catching those HCCs small.The ablation kills the area where the tumor is located and also just a little bit of the tissues around the site. They also ablate as they are withdrawing the instrument so as not to cause seeding as they pull out. The ares where the tumor was is absorbed over a short time. They always did a MRI 30 days post and each time the report came back as a  successful ablation. You said that the tumor was on your liver, is that the case or was it inside your liver. Theres a big difference in regards to its location. Seeing that you called it a HCC, Im thinking it was inside? You will need to have repeat MRIs every 6 months for quite some time. Your 2 years post harvoni treatment and you said (maybe) slayed the dragon? Havent you had any post R/X load counts done?  I dident have too much luck with the TACE procedure, but all My  radio/microwave ablations were successful. Im hoping that your liver is not like mine where as it just kept making new tumors. Keep a close watch on yours in the future. RC

Hey Canuck, 

Great to read your words again.  You are truly dedicated to this forum and us 'victims' who need your reassuring words............Thanks!

Yeah, I hope that this episode will do the trick and be my last, as I'm loosing the urge to 'fight' or to be more precise, I don't want to spend my last years 'chasing doctors'. 

The ablation has good numbers...............in the mid 70%s and hopefully with the TACE [chemo] it will give me better %'s.  Have googled all over trying to get the info, but no luck.  Maybe someone out there knows or has experienced what I went thru??

Thanks again.......