Ash, you have been and are going through such an ordeal. I am in awe of your forbearance. I can't imagine having to deal with all you are dealing with. You know yourself well; and as far as wallowing in self-pity, it sure doesn't look like that from my end. Please give yourself some grace. I am grateful you have little ones in your life to bring some light and joy into your circumstances. And you brought a big smile to my face with the image of you on that bed, writing furiously. Sure would be nice to sit down and have tea with you or even second breakfast  to get to know you in person. 

Hey,

Tell your editor that I really DID enjoy your unrevised verbose edition! : )

Albumin, can be tested for in both urine and blood. In urine, re: kidney function (they can look for too much albumin/blood/proteins which might indicate stressed kidneys), and sometimes they might look for too little albumin in blood/serum in regard to ascites. They know what to look for and what it all could mean. If I were you I would try not to scare myself reading into labs too much, as long as the labs are showing up mostly within normal limits and that they ARE doing the repeat testing is the main thing. You just need to be watched well and with TLC.  : )

As far as your new concerns re: kidney function and ascites, ALL those things you have been looking at in your old labs (GFR/creatinine/clearance/electrolytes, etc) ARE ALL the correct items that you and your docs can continue repeat testing of (and if any of those labs were not within limits), those would be the things you could/should discuss with your docs - BUT ... being that they ALL seem to be within normal limits (from your account), then things sound pretty good or OK I am guessing. I am relieved to know those labs (GFR's, etc) you looked up have been within normal limits, and that they have been doing quite a few repeats of them as you go along. We are just going to have to see if these oddities are passing fancies. There may be other tests they know to do (I would not know which other ones to do) but they do seem have to done the majority of the ones I can think of on you, so i find that somewhat reassuring.

Re: "clearance" - it is my understanding that if your GFR is getting too low (indicating a lowering of your kidney function), you may have a decreasing ability to "clear" your creatinine, thus higher blood levels of creatinine may be seen in people with less kidney function - as far as I know that is the basic jist of it - happily your GFR has been good all along. I am just trying to answer your prior query on what "clearance" is, that is, IF I am close to explaining it correctly!

Maybe these ARE just passing oddities (one view of a pudgy lookin kidney) and some thought-ascites - were both of these determinations made just based on your one last imaging?

Where are your hepc EOT LFT and VL results?

This friend of mine (years ago), was quite ill, had a sarcoma, was on all kinds of treatment drugs, she did well in the end - while in hospital for one of her first stints (they actually kept you in the hospital back then in the old days to take care of you for days and weeks at a time!), she was so hyped up on steroids, she would sneak out of the hospital at night and going running/jogging! Of course this was an absolute no-no in her condition, but she said she could not resist and had to burn it off somehow.

Later, C.

Hey Ash, send me the edited version by private message and I’ll place it in the original location. Together, we’ll get things fixed up!

Thank you Tig and Canuck -

Tig, 24 hrs is a generous margin, I just need to be more disciplined and avoid leaving things overnight in future.  If this is not too much trouble, shall I just send you an edited version (just removing or shortening off-topic bits, not affecting people's replies, a bit of reordering of points, a few typos). Unfortunately, I am one of those people who think through writing/speaking, rather than think-formulate-write. Then the steroids exacerbate my usual wordiness and the chaotic flittering of mind from one thought to another.    I will try writing in Word first, then sleep on it, shorten / edit and paste.  (Actually doing this now, hope the fonts etc do not get messed up!)

Canuck thank you for the encouragement, and yes, still on half dose steroids. Seems to be enough to keep sickness at bay.  I did lose energy and appetite though (but still manage to eat enough thanks to my vigilant husband, when he is at work, he comes back to me still finishing breakfast, but he is only working part-time at the moment, so keeps an eye on me).

The only annoying thing with reduced steroids is that they still give me hype without the benefit of energy. You know when you are really overtired, and can neither sleep nor do anything productive?  Like mentally cannot stop, but physically cannot start?  Its like this now. 

Whereas the full dose gave me physical energy to clean house, garden, jog, whatever.  But it also made me over-eat (and crave for salt, sugar etc), plus stomach pains, and huge mood and energy spikes, swings and crashes. Now its more like meh, cant be bothered with anything, and falling asleep in the middle of conversation.  I think I will stick to half dose though, if nothing else, it is less of a burden on my body.    

Kidney records yes, a good point, Canuck, I do have some of this data. I have been so preoccupied with the elevated AST/ALT and with my ever-decreasing white cells / platelets, that I ignored the rest, just glanced at them briefly to see if within the norm.  Looking now at the spreadsheet started on 20 August (first pre-chemo test) and updated fortnightly, all looks normal so far - although this is probably not the full kidney test you meant, but still a good indication?  Here are those bits of data I have -

Serum creatinine - lab normal range 44-80 - fortnightly tests between 52-55.  Then down to 49 in the week of my highest AST/ALT spike, and up to 62 last week.  Seems pretty stable and within the norm.  Not sure if it needs a separate test for clearance, or if clearance is implied in the serum data here. I guess if serum content within the norm, this suggests it is clearing OK?

Albumin - lab normal range 35-50 - fortnightly tests all 42-43 last weeks missing.   I guess for kidney it should be urine test rather than blood test though? Will ask.

GFR -   what I have on my paperwork is eGFR EPI rather than GFR have just googled it, seems to be some sort of adjusted GFR, mathematically derived from various things rather than actually measured, not sure if I understood correctly.  In any case, different websites suggest that normal GFR is >60 and eGFR should be >90.  My eGFR shows as >90 every time.

Sodium, potassium, urea, total protein - all within the normal ranges, sodium a bit closer to the high end, perhaps, but still within. 

I will press for those kidney tests next time.  Thanks for drawing my attention to it, this has put my mind at rest for now, and perhaps explains why the doctors / nurses are not too worried, and just waiting for the next CT scan. 

Hi Ash,

There is a 24 hour limit on editing and deleting. Anytime there is a desire to change or edit after that period, it can still be done with the assistance of a Moderator. It prevents the edits that change the conversation, after the fact. It keeps things honest, when honesty is ever questioned. We don't have that problem here thankfully, but there are people that have tried and failed to do exactly that. Forums have a way of getting a bit contentious at times and we have found it better to prevent that whenever possible.

Tell me here or by PM, what you'd like to remove or change and I'll take care of it for you.

(I tried to send this yesterday and the hard drive on my laptop failed. That kinda goofed up my reply timeline. Sorry for the delay)

Ash,

Tig and Cheddy and others will know - I don't - there ARE limits on how much time you have to get an edit done (easily). Lot of times i have tried to go back the next day and fix spelling or grammar or something so my ignorance does not show, but I have waited too long and the error is permanent! You are a good writer/communicator - so i would not fret if you find you can not go back and correct. 

I hope things are going as OK (as can be), considering ALL you are having to do.

Noting your comments about ascites and kidney function, if i were you (and they have not already been monitoring you with kidney function tests), i would definitely request that some good kidney function tests be done (and that they discuss all of these old/new lab results with you!).  Albumin, creatinine and clearance, GFR - all things like that. Your docs know what to test for - if they have not been testing you, i wonder why - I would be surprised if they had not already been doing "some" of these tests on you to monitor some of these things. You could check to see if there are any old (older) baseline kidney function/albumin/GFR etc. results in your file, to compare against any sets of current testing.

You have multiple health issues going on, and from your chemo to your hep c and b drugs, you have had (and are having) a lot of different drugs go through your systems, so (IMO) I think they should be keeping an eye on your kidney function, with labs. It certainly cannot hurt to do so (well, 'cept for the extra vials they draw from you)! It is good to know how your kidneys are doing and how well they are keeping up with everything. Kidneys can put up with a lot!

I very much enjoy reading what you write (all of it) - you are a good thinker - but I will focus in on only a few items - YOU ARE VERY CORRECT to drink what your body is telling you to drink (until it is officially proven to you, shown to you, in NO uncertain terms, that you CAN NOT drink a certain amount of water!) Ask for the labs, so you can have that feedback, so you and your doc can check on these things, and demand some conversations with your docs about your kidney function and all possible reasons for a little ascites - so that you all have better guessing and clarity. Without the lab tests and their known results and comparables, there is simply less info to guess about. Get some more clarity and guessing out of your docs and labs and use that to help guage things. 

You are correct in figuring out (objectively) why you have had more visits to wallowing and self-pity - (I would not call it that) but you did, so those are the terms I refer to - you have a hellish pile on your plate. Anyone would be overwhelmed trying to deal with all of your adversities. Cut yourself some slack - you are entitled to wallow, pity and do anything possible to help get you to a place where you feel better.

I am NOT enjoying your nurse who rained on your parade about your early crashing UND and LFT's - I think she is wrong! Early crashes stick! The early UND's and early crashing LFT's ARE very telling and very important. They herald the inevitable outcome. We have seen it here time and time again, and it has been shown in the stats time and time again. That is the way of the new DAA's and of the Epclusa world - no one is allowed to officially celebrate until they are SVR12, but hell, the stats show how good early UND's stick. With epclusa you have whipped this hep c easy. 

I hope you are managing everything somehow, that you have been able to control the nausea? Are you still taking the 'reduced' amount of steroids that you discussed with the doc? 

Don't fret about keeping us up to date on everything - just simply do what you feel like doing, write what you feel like writing, and when you feel like it. We will still be here, whenever you show up. Just concentrate on trying to get the rest and nutrition and doing anything that might make you feel one iota better. 

Balance the sweet wee chillins and their lovely restoring love pheromones to their un-cute organisms. 

Hey, nice your man can cook.  ; ) C.

Yes, absolutely Tig!  Wise moderation is key to striking a good balance, keeping garbage at bay, organising what needs to be organised - and still encouraging a natural and free-flowing discussion.  It is harder than it looks, because good moderation often looks invisible :) 

From my past experience of forums, many years ago, among unruly gamers constantly complaining about mods and admins - then realising what they have lost when it was too late, the mods could not take it any more, downed their tools and left, and the community disintegrated into holy wars and spam.  There is no danger of that here for sure, different kind of people, different purpose  and dynamic, but still a huge invisible work must have gone into it to make it what it is!

(This was actually a longer post comparing this forum with the cancer forums I am reading, and weaving in some of my struggles with the twin-headed dragon.   I took so long editing it that my IE crashed and ate all the edits.  The original version is too long, unstructured and full of typos - I am going to remove it into Word, then look at it with fresh eyes once the steroids wear off and see if it's even worth editing and reposting.   Steroids make everything look great to the author, but not so much to the reader haha we'll see).

PS. Is there a time limit on editing the posts Tig? I wanted to shorten the one started last night and finished this morning, that's the one under your reply Tig.  It's very long with a couple of irrelevant and repetitive paragraphs, I made several attempts to edit which show in preview, but when I submit it's still the original bulky version from this morning. 

-- Edited by Ashenvale on Monday 25th of March 2019 02:10:47 PM

-- Edited by Ashenvale on Monday 25th of March 2019 02:31:06 PM

Hi Ash,

I have dealt with so many medical professionals that have rolled their eyes after hearing something that originated on a forum, ours included. That’s one reason we have been so diligent on the information shared here. We will always allow people to share their thoughts and ideas, but when they become false or misleading, we squash it. I’ve always been very strict on what is shared here and that has always been the mindset of my predecessors. Garbage in, gets garbage out and we can’t allow that. So, if your nurse cares to get involved, share our address and let s/he see for themself. They soon discover that what we know, share and discuss is true and honest. No smoke allowed... 

Thank you everyone for all the responses and good wishes and concerns - I must admit that the last fortnight can be summed up as 'wallowing in self-pity', which does not happen too often.  

So I finally got out of it and started this update last night in hospital, just as I was being released after the weekend chemo - not a brilliant timing, but this time I was released earlier than expected as there were no short-staffing and no usual delays.   Usually as soon as the last drop of IV flush is done, I am out in 10 minutes.  But here I was 20 min after being disconnected, and still sitting on my bed typing away, my husband already had packed the bags, and nurses were looking in every 5 minutes, like 'oh you still here? no rush, no rush', and I am like 'sorry! must quickly finish this, I will be out of your hair in a moment'.  This morning I am at home and just tidying up the rough draft into a proper post.  I can't look up the previous replies, and I left it too long - hence more of a collective 'thank you' this time!
  
The snippets below relate to a conversation in Tanner's thread, starting off as discussions about water but the real underlying issue is the lack of joined-up thinking between specialist providers (although that in itself is a symptom of an even broader and more complex social issues but that would be a way, way off topic,  never-ending, possibly contentious 'chicken-and-egg' discussion about 'knowledge-power-social stratification-grassroots-professionals-generalist vs specialist-dominant vs alternative' etc).   So I thought I'd try and keep to disjointed anecdotes / snippets grounded in immediate experience.

Wallowing in self-pity and a knee-jerk water advice from providers.  This overlaps with what I said in Tanner's thread re water advice I received, but explains in a bit more detail, as well as updating on my situation.

So I have been googling frantically this last fortnight, scaring myself to bits and then wallowing in self-pity.  The fatigue was so bad that I have not left the house for 10 days (from end of last chemo until the pre-chemo visit).  That's really bad, as usually I have at least 3 decent days before the next chemo, which we try and spend outdoors walking. But this time, I just did not have those 3 good days, the fist day I felt normal was the day of my next pre-chemo visit, so no time to recover energy.  All this was due to discovering ascites and very possibly not drinking enough water, setting off an unhealthy dynamic.

A little diversion on the 'grandchildren cure'. The only good thing was, that once I realised I am not going to do anything useful this time round, I offered to baby-sit my grandchildren. It did not do anything in terms of exercise, because all I was able to do is sit with them playing Lego / watching cartoons / changing an occasional nappy, that sort of thing.  My husband did all the running around.  But it was nice, I do not see them often nowadays, I am scared of toxic chemo traces in the house, so the first 3 days are out of bounds for visitors, then we thoroughly clean the surfaces, change all the covers etc.  Then there may be a window when I am feeling OK but they might be busy.  And towards the start of new chemo I am prone to infection, and need to walk and recover some activity.  So this time having them for two days was tiring but lovely.  On the first day I had the three of them (5 yo, 3 yo and 1 yo), only for the afternoon, but oh boy, that was lively.  On the second day I had just the 1 yo, but for the whole day.  Haha, all my sleep problems disappeared, I slept like a log after those two days! I did struggle with the 3 of them, but only because they have different needs due to different ages, the baby wants to run around exploring, the 3 yo to cuddle up and watch a cartoon, and the 5 yo wants to talk to me, and all at the same time  - whilst my husband speedily retreated to the kitchen to make us all food (again different for all, me with cancer, him with diabetes, the kids likes and dislikes etc).  But it was really nice, they are very good kids, and it did take my mind off the illness.

Back to the water and mindless googling. So what was all the self-pity about?  The  main reason was that the last scan mentioned ascites along with mild hydronephrosis.   Hydronephrosis I had already looked up at the time, and was already told to perhaps cut down on water, so it wasn't as scary.  It is potentially bad, if it is due to a met growing, but I had previously decided to put it on the back-burner until the end of chemo, because chemo may well shrink it anyway, so no point worrying about it now.  (And if the chemo does not work, it will be a different picture all round anyway).

But for some reason ascites had escaped my attention until now. I have only properly googled it last week, and omg it does not look pretty.  As you can imagine, the images on google tend to focus on extreme late-stage cases, right in your face (even without looking for images), and main write-ups too.  I have found a couple of posts / threads on this forum about ascites, but in my case it is not clear at all whether it is cancer-related or liver-related.  If liver, it can be stopped, but if cancer it's bad news. They have different origins and different repercussions, I will try and post in the knowledge section some links and summaries on that specific angle.

As mentioned earlier, I was advised by cancer staff to lay off water when they discovered hydro-nephrosis (swollen kidney).  But then during last chemo I was told to drink, drink, drink due to BP dropping down fast and low.  Plus the 'death by IV fluids' (haha Canuck, that was a good one, I never heard of this before, but oh boy so true!).   When I asked about ascites, it was the same advice again.  So my last fortnight was spent - not drinking enough water, looking at scary images, and reading the info which mainly pertains to the late stage / extreme ascites.  All this has freaked me out no end, even if my rational side was saying 'hold on, there can be any number of things under the casual mention of 'some ascites'.  I think I ended up in a vicious circle - not drinking enough has affected toxicity and energy levels, lack of energy resulted in not enough fresh air and movement.  This probably led to having a foggier brain than usual - I was definitely not up to reading serious articles, so got more and more caught up in mindless stuff, like short pieces all repeating the same superficial info.  This fortnight was also bad for watching the news, what with Brexit, the talk of possibly shortages and stockpiling of meds and fresh produce - and like 'omg, will they run out of chemo? what will I do for juicing' etc.   

However, since those two days with the grandchildren, I regained some perspective.  I have now looked through a ton of proper authoritative articles, and did not find any advise to reduce water - at least not as an immediate measure with mild cases (obviously, it might be different  in extreme conditions / later stages).  Even those who do mention the fluid intake, do it in passing, and focus more on salt consumption and the importance of dealing with the underlying reason. 

Interestingly, neither salt, nor the difference between liver and cancer ascites have been mentioned by my providers. The whole conversation was like 30 seconds, just a kind of a 'common-sense, top-of-the-head, knee-jerk reaction' to me saying that I had to drink more than usual due to Epclusa -  like ' ah well, perhaps that's why, better stop it' (not in the same words, just kind of imagining what sort of a thought process can be managed in those seconds of time).  I wish I ignored it at the time, and having had such a crap fortnight recently, I am definitely increasing my water again, not a gallon perhaps - but at least 2.5-3 litres.  Even though I am no longer taking Epclusa, there are still too many meds for my body to deal with and flush out.  Just based on how I have been feeling, with and without water, on balance, it was better with. I am hoping for more energy and clearer brain, if nothing else.

On old toothbrushes and glazed eyes  I was reading one of the old threads (a diary of someone who did a drug trial), and he said that during the trial the participants were told to change toothbrushes after a few days. At that point I was (I think) past week 8 of treatment, had negative result already, and yet still using my old toothbrush. So when I read this post,  I was like - "doh, why have I never thought of it - of course, it's a no brainer - every leaflet says you can pick up C from sharing razor or toothbrush, so OBVIOUSLY much easier to reinfect from your OWN old toothbrush which you use repeatedly. And not one person - liver consultant, liver nurse, or any treatment leaflet I was given, even mentioned the possibility of reinfection through your own razors / toothbrushes.     

So, I was bursting to share this and at my next visit to hep nurse, mentioned it to her.  I am always humble with doctors-nurses, in that I do not want to appear a 'know it all' or infringe on their time -  so I presented it very carefully as one of a concerns rather than trying to 'educate'.  Like - "Oh, I hope my bloods are still negative, I know they were negative at wk 4, but I didn't think of changing my toothbrush,  I read on one of the forums that during the trials it was recommended to change to avoid the risk of reinfection".   

I expected some sort of polite 'oh yeah ... that's a good point' (not expecting any commitment to mention to future patients, but just at least a nod?) - but her eyes just glazed.  I guess the minute she heard 'I read on a forum' it was like 'oh well. what do they know'.  This was very disappointing and just highlighted the overall lack of interest. 

A little diversion.  I teach at Uni (sadly not science  arts and humanities, a dying breed no longer required) - and there are plenty of occasions when a student says something, perhaps not very well formulated or even that well informed, but there is something in it, just some detail that kind of makes you prick your ears, like 'oh yeah, interesting I haven't thought about it in that way'.  Often nothing comes out of it, but sometimes it introduces a fresh angle, and just keeps you alert to other possibilities.  It is becoming more and more difficult to maintain in the current education climate (yet another complicated issue) but we try and keep it up as much as we can, partly to encourage the students, but more importantly for ourselves, so as to remain open-minded and not stagnate.  And even if the idea is not worth it, or there is no time, we try to acknowledge the student's view, even if there is no time for anything more than 'well that's interesting - perhaps we'll try and pick up on this next time'.   

Coming  to medical establishments as a 'humble patient'  was an eye-opener.  Of course this comparison is not quite fair, at the Uni it is our job to help students develop themselves (as well as providing education) and we have more time for each student than NHS has per patient.  But I think it also depends on individual practitioners and the culture in different departments.  For example, I found cancer staff much more genuinely supportive (even if not always informed about things beyond their specialism) and caring than hep nurses.  I wonder if this is to do with stigma, eg cancer may be seen as 'bad luck' whilst  hep as 'your own fault'.  Or maybe specialist cancer nurses have compassionate behaviour as part of training, or maybe it takes a particular kind of person to specialise in cancer. Or maybe just a coincidence.  Whatever the reason, there is definitely a different culture even within the same NHS system. But in terms of knowledge and keeping up with areas outside the immediate specialism, that's a problem across the board.  Once you are in the system, you are more or less 'processed' according to generic procedures and policies already in place. I guess this keeps the system working efficiently, but the onus is then on us to educate ourselves and assume a degree of control of the process (as many have posted here already).  

The last snippet picking up on the conversation with Tanner, was about comparing this forum to the multitude of other social media spaces, we used different ones but seemed to have agreed that they are less organised and more confusing than this one.  I have seen both unmoderated spaces and too heavily moderated spaces, and this forum here strikes a great balance.  Also a good balance between solid evidence / scientific publications and people's own experiences.   It took me a while to register and participate, maybe 2-3 months, when my first liver problems started late October, before they even thought about Hep, I already googled it and saw Hep coming up as a major contributor and first call test for those AST/ALT numbers.  So by the time I actually went for that hep test, I had already been reading about the treatments here, and weeks later, the liver consultant said 'Epclusa' and I was like 'yeah!'  The hep diagnosis was still a huge shock, but it would have been much worse had I not prepared myself already.  I guess the major difference was also the positive vibe from this forum, like ' these drugs are amazing, so many have got great results' - and also seeing how many people have been as completely unsuspecting and discovering it late in life.  It's a good place, I will never tire of repeating it :)   My only worry is that as hep is disappearing into the background, my posts will inevitably becomes less and less relevant and more and more about cancer, as that one is not going away.

Having said this, the hep nurse at EoT appointment poured cold water on my 'undetected' parade.  She said  - "it will still show negative right now - I can tell you this without even taking a test, because the drugs are still working  but with chemo it may well come back due to the compromised immune system".  Of course they are right to warn you, but I kind of not thought of it in that way, thinking that will be it now.  This added a bit to the overall depression and lack of motivation, because I can't cross this one off the list until the further tests in a month  and then I think 3 months, and 6 months.  I am sure I'll be OK, but it would have felt so much better to clear at least one problem off completely, as my 'list' seems to be increasing exponentially.  But I guess that's life in general, need to deal with it better.  More water, more air, more family -  less mindless googling!

How are you, Ash? I’m sending healing vibes and the hope that things are getting easier for you. 

Good to hear from you, Ash.

I agree.  That is a very comprehensive explanation.  Thanks for that as I can't even imagine what you are going through. I'm glad you are letting you medical team know you want to be in the process.  You're in the driver's seat and they are in a traffic jam.

Sorry about the fatigue, but I'm not surprised.  Look at all the work your body is doing.  It's not uncommon to feel fatigue with any of these treatments and you are doing plenty.  Just let your body have the time it needs.  Don't fret, just rest.  Everybody here knows how very very much you are actually doing.

Please add me to the pile of group huggers.  It's true, you are amazing.

All the best,

Cheddy

Ash,

Thank goodness epclusa EOT soon happens, one less thing.

The rest of it is SO much.

Man, are you ever good at relaying info! - I am amazed at how clear and clear-headed you are, never-mind doing so through the drugs and side-effects and logistics that wear on a person but just the stress of all that you are dealing with from day to day would be enough to not be clear. Pretty impressive how thorough and methodically complete you are in your ongoing work and communications. We certainly appreciate that talent around here!

Now, back to my dreaded "rule of one", where there is an immediate 50/50 risk of things going awry, mistakes being made, just as soon as one single other person get involved in your business! - goodness, the "rule of one" applies to you in spades when it comes to this ongoing steroid error! Good thing you obviously possess a lot of patient perseverance, "self" defense/preservation and common sense.

I am hoping it WAS a bit of the epclusa, that you are feeling the fatigue more - that IS possible, if so, then with epclusa EOT coming up, perhaps you might be able to discern less of any fatigue "sides" from the epclusa. Hard to say, and it might be hard to feel/judge, as you got so many mega drugs and variables to deal with. But I still hope that this COULD be true, that that epclusa added to feelings of fatigue, because even in a perfect world, this CAN happen, epclusa can make one feel fatigued at least at some periods.

There IS a doc/nurse/hospital inside joke about killing patients with IV fluids - I read a series of insider jokes about pts. surviving insults that hospitals (not the disease processes) throw at us - such as being overloaded with IV fluids - duh, they are supposed to "add" up how much IV is going into you, therefore deduce "how much" oral fluids you need. In and out, it's supposed to be simple math. But for many patients IV fluid intake and what a body can withstand can become the basis of "trial of life" jokes. I am sure they are keeping a close watch on many of your labs to make sure all is coping - creatinine and clearance, your electrolytes, etc.

I used to have very low blood pressure, after my hep c was cured - miracle - as far as I know I seem to NOT have low blood pressure any more! Maybe the same might happen for you - ya never know!

Sure is nice you share all this with us - learn so much from you. 

Don't fret about keeping us informed - even tho we hang on your every word!, just post only if and when you are wanting to, and are able to and have the spare time/strength to expend on it. 

Later, C.

and to only a few pills left .

oh ash, you are amazing

i'm with tanner on the group hug thing, and we all look forward to your labs with you

Hello Ash,

My Lord, you’re going through it! You have my support, whatever it takes! I would be nosy about my labs, too. I’d be sneaking a look in that record, every chance I got! I’m with you, I want to know what’s going on. Always let your healthcare team know, you want to be included in the process. Then you tend to get better updates, because they know you’re waiting. It does sound like you are on top of this and won’t let anything slip. Once the Hep treatment is successfully behind you, you’ll notice improvements. Sometimes great and some subtle, but I guarantee you, being HCV free brings better health, a stronger immune system and hope! 

I changed the name for you and will move this to the On Treatment section, as well. That way all of our conversations will be in one place for you. I know there will be plenty of discussion ahead! Keep us informed when you have time. Good luck this weekend!

Oh, Ashenvale. I am just blown away with all that you Are going through. It must have been exhausting just to write out that whole post. Seeing as we cant hug you in person, our little community can still  put our arms around you.

Hello everyone, thank you and apologies for being so slow in responding.  Chemo has been very tough on energy since the restart, the fatigue is much worse than I've had before - but otherwise nothing dramatic to report.  A few irritating niggling aches here and there, but no serious pain, nor sickness.  Compared to many others I am really lucky, or perhaps the dose is not aggressive enough.   I am back to normal today - but going to next chemo on Friday, so this is a good window to catch up with the thread.

Steroid saga.  See below (towards the end of this post, where I reply to Canuck and Cheddy)

Bloods. Still waiting for the promised printouts of recent bloods (they keep having 'problems with a printer'), but have been told today that the cancer markers are still going up.  For my type of cancer the norm is below 6.  I had it about 60 when I got diagnosed last May.  Then after surgery and the first chemo it went down to 18, which was really good news.  It then went up to mid-30s during Nov-Dec whilst I was off chemo sorting out hep.  Then two weeks ago the markers got all the way back up to 68.  Cancer markers should not be a cause for panic, as they can fluctuate anyway, and can be due to a number of things - they are used simply as one extra piece of data among others, to indicate the overall trend, that is the chemo working or not.  But in conjunction with the increased number of mets it is of course a bit worrying.  However, today they took new bloods, as I am about to go for my third chemo this weekend.  So I will take a sneak peak when I am in hospital, they always leave the folder lying around.  Hopefully the markers will have come down again.

Hep.  Tomorrow I am going for my usual monthly appointment with the liver nurse.  Epclusa is about to finish (I think I have just 4 or 5 tablets left - trying to look at my signature for the EOT date but can't see the sig for some reason, perhaps it doesn't show in drafts).  No idea if I will be seeing the consultant at all, unless there is a cause for concern.  I think they will take the last hep bloods and give me the next supply of Entecavir  (that's preventative for B reactivation, I will be continuing it for ages yet).   The ALT/AST are still fine, both fluctuate a bit but keeping around 20.  I am hoping that my fatigue will lessen once I finish Epclusa, but then again the chemo will take its toll. 

Water.  Drinking enough has been a real challenge in the recent weeks.  I think this may be another reason for increased fatigue.  Obviously a gallon is a challenge in itself, as we all know.  But with chemo there are additional problems, for example being sick (which should be avoided - as I said, I am lucky and do not tend to be sick, but it is always on the verge).  Another thing is that my last CT scan found mild Hydronephrosis (the swelling of a kidney), usually due to urine not draining through fast enough, or not coping with processing all the water.  This is a completely new development, they are not sure what caused it, the doctor suspects there might be a new met somewhere that is pressing on my waterworks, although nothing is showing at the moment - but in any case, I was advised to be careful to not over-drink for the time being. 

Also, during chemo I am pumped with all sort of liquids, not just chemo itself but also saline flushes, basically bags and bags of liquid going into the system over my 48 hr stay.  And I am connected to the drip at all times, so each visit to the toilet is a protracted affair, get off the bed carefully, disconnect the chemo stand from the wall socket, then shuffle along to the loo pushing the chemo stand in front of me, then kind of manage everything you need with one hand (especially bad luck if they have to use my right arm for the drip).  Then shuffle back, spend some time untangling all the tubes and wires (no matter how careful I am, they always manage to wrap around the stand in the most obnoxious ways), then get back under the blankets only to realise that I have forgotten to reconnect it to the socket, so trying not to curse and swear getting out of bed again, reaching for the socket to re-connect it.  Then finally lie down and relax, only to need the toilet again like 20-30 min after, what with all the drinking and extra fluids going in through the drip.  It is such a nuisance, and combined with the fear of being sick, it was just all too easy to slip out of habit.  I do need to drink, not just for Epclusa but also low blood pressure,  usually my BP is normal, but always low when I am in hospital on chemo, it goes down to as low as 86/55, and the nurses insist that I drink a lot of water to get it at least to 95.  It's like every 30-40 min 'Hi - I need to measure your BP again' - 'OK' - 'still low, can you drink another glass? I will be back in half an hour'.   So it's really hard to balance with the advice to not over-drink and the whole hydronephrosis thing.

Now for the replies.

Tig -  sorry for being so slow, I saw your post (and others) very shortly after, and came back a few times intending to respond, but it just seemed impossible.  Probably should have just done a one-liner like 'everything OK, just tired' but it felt kind of lame after such a long absence.   And back to what we discussed earlier at some point - moving and renaming the thread - yes please, can you rename it when you have the time - the new title 'Ash and the twin-headed dragon'.   In terms of moving - where to?  You were saying earlier 'On treatment', but my Epclusa treatment is now coming to an end? Does it matter?  Can I leave it to you to decide whether to move it, and where would be appropriate, or leave it here or whatever?  But a new title would be good. 

SeeTheLight, 5-1-18 and Tanner, thank you very much for your  support and well wishes, hope you are doing well yourselves, I have not had the chance to check all the threads yet, but will do after a bit of rest and see how you are getting on. I remember there were a few people starting treatment around the time when I went back on chemo, will be good to catch up.

Cheddy, Canuck - the miscommunication  between different providers is still going on, as is my steroid saga.  So my last update from the first chemo session (four weeks ago) was that they still gave me double amount.  I told the oncology consultant again, and she issued a prescription reiterating once again 'twice a day, 8.00 and 12.00 - starting on the second day of treatment, for three days only'.  So I went to my second chemo two weeks ago - and this time it was even crazier.  I got steroids on the first day through the drip at 5 pm (way too late, so have not slept at all that night).  The following morning, Saturday, they came to dispense everyone's medicine but nothing for me. About 9.00 I asked where is my 8.00 dose of steroids as I am supposed to start on the second day of treatment.  The nurse said 'there is nothing on today's prescription, it stars tomorrow'.  I said 'but tomorrow is the third day? the prescription clearly says 'starting on second day'?  The nurse went to check.  She was looking at the screen for quite a while, then making phone calls, then going to the screen again.  Then about 10.00 she brought me the dose and said 'there was a mix-up, sorry, we could not find your prescription, so I had to call the doctor to make out a new one'.  I asked my oncologist today why this is going on, what might be the problem. She said this was due to the system.  Like you and others have already said, different parts of the system do not communicate well enough.

So now I have some clarity about the prescription process, here it is.  The process starts on Wednesday with my oncologist making out a prescription for the actual chemo and all those extra things including steroids.  This is sent to the hospital pharmacy.  The pharmacy prepares the drugs and sends them to the ward by Friday morning.  The ward 'doctor on duty' is then supposed to locate the original prescription online in my records, check it against what has been sent by the pharmacy, and write out a 'drug card' for the nurses, basically reiterating what needs to be dispensed to me and in what pattern.  Sometimes the pharmacy encloses a copy of the original prescription with the drugs, and then the doctor on duty takes it from there.  But the pharmacy does not always do this, I guess they really do not have to, as the original prescription is supposed to be on the system anyway.  So sometimes they will enclose a copy and sometimes they won't, but rely on the 'doctor on duty' to check it themselves.  The doctors on duty are always different, often trainees (I am admitted on Friday afternoons, and after 5 pm they all go home except the nurses if there is an emergency, they call a 'night shift' doctor from a large hospital next door,  but they are not necessarily cancer specialists).  So anyway, with it being Friday afternoon, if it happens to be very busy or short-staffed, or the doctor is not very experienced in the procedures, the drug card might not be written out.  And if the pharmacy has not included a copy either, then the poor nurses are really stuck, especially if it's a junior or a member of 'support staff' who is only allowed to dispense what is directly written out for them by their own ward doctor, rather than chasing up and second-guessing the prescriptions from other providers, and checking whether there is a new order superseding the old one (like Tig said earlier).   I can see from many other posts that this situation is not entirely unfamiliar, despite our different countries and health systems.

Finally, this steroid saga reminds me why I was so fatigued this time around.  By the time the nurse has got the prescription, it was getting too late for the second dose.  I mean, I was taking the 8.00 dose after 10.00, and this means I couldn't take the next one at 12 as intended, but should have given it a couple of hours delay. But then it would be pushing into the afternoon,  and I did not want another sleepless night, so I just ended up only taking one dose that day.   Since there were no side effects, I did the same on the remaining two days, Sunday and Monday, just took one dose instead of two.  That's why my fatigue was so awful probably - in the past all those extra steroids were keeping me pumped up, but now I cut to half a daily dose.  It was a bit naughty but I did tell my oncologist today and she agreed that this was fine.  She has now issued a new prescription based on half the dose (still taking twice a day but half strength) and we'll see how it goes this time. 

Just realised my phone was beeping 'message!' for a long time now, I was supposed to have a phone catch-up with work, so I'd better go and check it before anything else.  I will try and be back sooner this time. Sorry if I left something unanswered - will catch up with everyone's news later as well.  All the best to everyone in the meantime!

Hi Ash,

I‘m here to check up on you. How are you progressing with your chemo and Epclusa treatments? I’m sure you’re exhausted. When you have time and the strength to send us an update, please do. We’re pulling for you! 

Wow Ash you are doing amazingly. Rest all you need and let us know how its going when your up for it. I can understand you are not up for a lot, with all thats going on in your body at the moment. Take Care. At least your enzymes have lowered so well, so hope you are able to keep it up with the full chemo.

Wow, Ash, so glad those numbers are going down. You are certainly on a crazy ride, with the chemo and the mess with steroids; as if the Hep C wasn't enough. I am in awe of your attitude and perseverance. When you husband sneaks you that pill, tell him to give you a big hug from me. 

Rest easy, Ash. I can’t imagine the stress all of your treatments are placing on you mentally and physically. You’re a Warrior on many fronts! It’s too bad you‘re having to deal with and second guess the steroid orders and whom should have control over the various medications. You’ve got enough to work on, without doing some of the legwork the doctors should be paying better attention to. I’m in full agreement, keep your mitts wrapped tightly around the magic Dragon beans and grab the doctor that wrote the steroid orders and ask why. A new order supersedes the old one and some of these hospitals don’t bother to update. My father’s last two hospitalizations, still had medication orders from previous admissions and they tried to administer them! It’s very important to be part of your health care team, not just the subject of it.

Take good care and check in when you’re up to it. We’ll be here waiting! 

Yes, Ash.  

Make sure your providers talk to each other.  You probably know, they are not automatically linked.  You really have to be the common thread, lest they cross wires.

As for unwritten rules: great things happen all of they time.  Stay strong. Rest well. 

Thanks for letting us know what's up.

Cheddy

Hey Ash,

Nice you checked in - been wondering how things were.

Just concentrate on you, all else should wait. Great they have started with the cautious re-start of the chemo.

I would NEVER criticise you for NOT letting them take your epclusa away from you (considering all)!

Brother - about the ongoing steroid weirdness - it is always amazing how wrong communication can go! Unwritten rules and bad communication can kill us! Hate those unwritten rules ... "what can screw-up will" ... Murphies law ... and, my most hateful favourite .... "the rule of one". The way the rule of one works for me, is, as soon as one other person is involved there is an immediate 50/50 chance they could make an error and get things screwed up for me.

Thank goodness you are on it and them.

Yep, 5 is right - you are forced to bring the steroid matter to the attention of ALL your docs and the hospital, again. Sigh. 

Keep going. I hope you are feeling as good as is possible considering all the chemo/steroid and HBV and HCV meds you have to be doing. Labs are good, that's one very big good thing! C.

ash, you are doing so good

have you talked to the doctor or tech who recommended your dosage? they need to talk with each other on your behalf

i love your avatar

lots of rest and water for you

praying for you, 5.

Quick note - sorry for lack of replies - have resumed chemo, very tired, and had a few deadlines /errands to manage before that. Got my last lot of Epclusa last week, AST/ALT still going down, this week's pre-chemo test shows 18 and 25. They are giving me reduced chemo at the moment just to see if any interactions - not so much with Epclusa but with Entecavir, if I am OK this time, they will resume normal chemo dose next cycle in two weeks.

And I don't know whether to laugh or cry they STILL give me double dose of steroids even though my file now clearly states, and the consultant oncologist writes every time - 'TO be taken twice daily, for 3 days only, starting on the second day of treatment'.  (So 6 doses in total).  And once again they gave me 6 tablets to take home for after chemo, plus brought me the same every day in hospital. (10 doses in total). 

They are also aware that I am now supposed to be taking 'other meds' (that's Epclusa and Entecavir), and on the day of admission asked me to give the meds to them and they will dispense for me.  That's quite normal to ensure the patient doesn't forget / gets mixed up etc.  But I was so freaked out about the ongoing mess with steroids, that I decided not to trust them with my precious Epclusa, and blatantly lied that I forgot to bring my meds (no way was I letting it out of my hands!), and that my husband will bring me a tablet every morning. The nurses are actually very lovely on the ward, and really look after me and other patients - I just can't figure out why this is going on with meds.

Anyway - quick update turned out longer than intended - need rest, will reply properly to older posts as soon as I can! Hope everyone is doing well in the meantime.

-- Edited by Ashenvale on Sunday 10th of February 2019 05:05:20 PM

-- Edited by Ashenvale on Sunday 10th of February 2019 05:07:55 PM

Hey Ash,

Thanks so much for being so informative and thorough and sharing. I hope i am not wearing you out with subjects and queries, but you have been doing such a good job with explaining where you are at and what has happened, I consider you and your ability to convey this an extremely valuable education, for anyone, to be able to know these ins and outs - any of us could be in your shoes and have a need to know or a least have some familiarity with what you have and are going through. You do us a great service in your sharing. Thank you. I only hope we at times can be helpful to you. 

Over in this thread Healio/HCV Updates i stuck a couple articles (in a lull when you have nothing better to do than read) as they have to do with assessing Ca pt's for hep prior to Ca treatment (only because we were touching on this topic a bit ago).

Since you told me the name of your chemo drugs I did read up on that particular therapy a bit, and got myself sorta familiarized with it - and your regime (although it is distinctly of it's own) it rings similar to other folk i know who got "series" or twice a month "rounds" of chemo, including like-delivery methods, PIC drips/central-lines etc. But YOUR explanation was really excellent and gelled it very clearly.

So true, the simplest things that can dictate when chemo can take place (all that is required and what has to be in place to orchestrate it) - from the critical timing of labs, to the the logistics and risks of exposure with presenting your body into the public.

I am gobsmacked at the good long results people are getting from the investment in and doing the work of chemo! It is actually quite mind-boggling to see these folk still carrying on living their lives years even decades after their dx, all because of the ever-evolving chemo treatments. Chemo can buy some people quite a bit of benefit.

What color(s) and shape(s) were your steroid pills? - the ones they told you to take in error on your first three days at home? We could prolly guess at how much steroids you ended up getting (all in all) during those 2 chemo rounds, if you wanted to figure it out! I agree, that dispensing/instruction error should have NEVER happened. 

You are smart and brave I am very glad you have come to this site to teach us. C.  : ) 

Ash,

Just so you know, I can rename and relocate this thread, at the request and direction of the original post owner (you). If you want to make some changes, let me know. If that’s what you would like for a title, we can do that. 

Thank you for all the congrats, 1-5-18, Annie and Observer! Yes indeed a happy dance is in order, that's exactly what I feel :)    Since reading on this forum, I did expect it to come down significantly, but thought it will be more gradual. I could not believe my eyes when I saw 25 in those tests.

Tig, thank you for clarifying those lines in the blood test. Also, about the thread - do you mean that you can move this entire thread to 'On treatment' and change the title at the same time? If so, could the new title be 'Ash and the twin-headed dragon' or something along those lines, to indicate that my updates are likely to be hep+cancer related?

Or do you mean I should close this one and start a new one? In this case let's leave it for a bit. I can do it when on chemo (that is, copy over info from here to there, including some valuable tips from all the responses). Those weekends under a drip in hospital tend to drag so this will be a good distraction too. But it is probably makes more sense to just move the thread instead of 'multiplying entities' (unless it is a headache for technical reasons?)

Canuck, to answer your question re: date of chemo restart - yes, of course the sooner the better, but there were some logistical problems. I must explain how it works with chemo, then it will be clearer.

There is a very set schedule, basically they do it over the weekend, starting on Friday. Two days before, on Wednesday, they do all the pre-chemo tests, and if the results are OK, only then prescribe the chemo and book the bed (depending on the time of the appointment, this happens some time on Thursday). The patient then turns up to hospital ward on Friday pm, the chemo arrives from pharmacy same time or shortly after, and then the drip for 48 hrs and if all is well, go home Sunday evening. The first couple of days at home are usually OK as the steroids they give you at the hospital are still working and keeping the sides at bay. Then the steroids wear off and the sides kick in for about 3 days (this of course differs from person to person, but for me the worst days tend to be Wednesday-Thursday-Friday of that first post-chemo week). By the weekend I am usually better, but then it's the worst time for infection risks as the immune system is at its lowest, so the remainder of that week I must avoid any crowds, children with runny noses and such like. Then it's back to the clinic the following Wednesday, do bloods, see consultant, pray not to have temperature etc, and if all is well, then go for the next chemo round on Friday.

So this weekend would not have been possible for chemo restart anyway, because the pre-chemo blood tests were not even ordered yet (she has just about received my liver tests from 10 Jan, but they need the full blood count and more recent than that). The first possibility would have been next weekend, Friday 1 Feb. But this was not ideal, as I have my next liver appointment on Thursday 7th, to get my next batch of Epclusa and to do 8 weeks bloods. As I have just explained, the Thursday after chemo is a 'bad day', so if I went for chemo next weekend, then that liver appt on the 7th would be quite risky. Firstly, possibly catching flu in the hospital waiting room (which would then result in yet another chemo interruption, which I can't afford), and secondly, there would be a risk of being too sick to travel to the appointment, and running out of Epclusa.

Because of that, it was my choice to go for 8 Feb, rather than 1 Feb (and these were the only opportunities due to the routine). My oncologist is pretty relaxed about it, because my cancer is so advanced that they do not aim to cure it, the chemo is palliative, to keep it under control and 'delay the inevitable' for as long as pos. Some people in similar condition (that is, pain-free but terminal with widespread mets) decide not to go for chemo at all, as they figure it is better to enjoy what is left of life, instead of being constantly ill from chemo and die a bit later. So it's left pretty much to the patient, obviously they do express their opinion but she didn't seem to think one week will do much difference. I am just keeping fingers crossed that nothing else happens in the meantime!

About the "lovely labs I now own" ah I wish No, I just asked my oncologist to let me have the print-outs. I also had some printouts from previous tests, again by asking the oncologist (or my care nurse who is really nice). But it's still something they do as a favour/courtesy kind of thing, not as a matter of course. Sometimes during chemo they would leave the folder lying around near my bed, and then I'd just take a photo, then put it into a spreadsheet. That's how I knew that my ALT/AST deteriorated, even whilst the chemo was going on, before it got so high that they had to stop it. Looking at my spreadsheet, it's like this (ALT first) -

22 Aug 96/83, 26 Sept 134/92, 7 Nov 190/146, 14 Nov 199/177, 21 Nov 234/238. All other things (like bilirubin) are within the norm, except platelets and white blood cells decreasing each time, and hitting the lower limit (but that was obviously due to chemo).

7 November was when I was due to go in for my 4th chemo, but they decided not to proceed because of the elevated enzymes, and referred me to the hepatology. The hepatology consultant said something along the lines of there being no point in referring me to him, without testing for Hep first, so 14 Nov was when they tested for Hep and repeated on 21 Nov. The only other papers I have are CT and MRI printouts, but they focus on cancer rather than liver. I will be asking for the printouts each time I go now.

About the steroids - it isn't so much the dose that they overprescribed, as the duration. So I was only supposed to take it for three days (of which two in hospital and the first day at home after). They give you the exact amount to take when you leave hospital, so it can be two tablets or four tablets (depending on tablet strength), let's say it was the stronger ones, so just two tablets, to take on the Monday after hospital.

Now I must deviate again and explain a bit more of the system. Most people here take their chemo as day patient, so only stay half a day on Friday, then go home and administer chemo themselves over the weekend. They have a PICC line fitted into the vein in the arm, a bit like a port but different, it goes through the whole vein into the chest, and stays there permanently until the chemo is completely over. SO for them, the steroids would have been given just once in hospital, and then three days' supply to take home. But for me it should have been two and a half days in hospital and then only one day's supply to take home.

But the hospital doctor on duty confused me with day patients, and prescribed the same amount. I was given a three-day supply and instructions to take it twice daily for three days. But of course by then I would have already had the two full days worth of steroids whilst in hospital (actually, 2 and a half days). So instead of taking steroids for 3 days, I took them for 6 days, which was far too much. I even asked when I was leaving - "Do I have to take all of these, or just in the needs basis, if I feel sick?" and I was told "Absolutely, have them all as prescribed".

So it was only when I casually mentioned to my own oncologist that I have not slept for almost a week, that she asked "wait a minute, how much have you been taking? that's WAY too much" - and then she checked the records and realised what happened. I am not sure about the exact dosage, they come in different strengths, and they just gave me x number of tablets. We found out after two chemos, so hopefully not too much harm done, but it is still worrying that things like this can happen and no one picks up on this.

Sorry about such a long post - just difficult to answer those questions without explaining the background, otherwise it might not make sense!

-- Edited by Ashenvale on Thursday 24th of January 2019 02:27:40 PM

Awesome ALT and AST numbers Ash.... 

 youve got that nasty virus on the run! 

Thanks for sharing your good news  

Ash,

Now that's more like it! I am so relieved to see your ALT/AST down now, they have really crashed quite beautifully (right along with your VL) . A very satisfying event when the ALT/AST (and VL) go happy. Your ALT/AST got high, so, this is a very nice dramatic crash then. It is an important improvement period, and it is also a telling improvement that your ALT/AST are at a mere 25 each now and this soon!  - your nice low ALT/AST are your treasured pearls to be stoked about, as well as being UND at 4 weeks. Proof your epclusa is working super-well for you. Gilead has produced some very good drugs and regimes, but especially grateful are us GT3's (all GT's really) for Gileads R&D, for epclusa, and for vosevi in general for those in need of re-treatment! I am glad they chose epclusa for you. Looks like you can take hep c off your worry list.

Theoretically, this whole thread is excellent and is already an "on-treatment" thread, as you had already been "on-treatment" with epclusa for quite some time before your first post to this site! You have amassed a very good amount of detailed hx and info right here, hard to switch away now from the thorough and complete story here thus far.

I know how anxious you must be and will be to get going back on your chemo, their plan (your plan) is to re-commence it Feb 8?, before you are finished your 12 weeks of epclusa in March. The tentative re-commencement of the chemo would start happening at aprox week 8 of your epclusa. Even though we cannot know for sure that you have had ANY true "re-activation" of hep b, that perhaps they elected to give the hep b med in an abundance of caution (that they put you on and are keeping you on the hep b med prophylactically/preventatively as you had suggested), we know from your info they plan on keeping you on the hep b med even when you are off epclusa, and back on chemo again. I have no idea HOW they decide WHEN is the best time to put you back on chemo, why at epclusa week 8?, did they tell you HOW they decide what exact date to restart chemo? If it were me I would probably be asking if i could start back on chemo asap or do I have to wait until epclusa week 8.

So, these lovely labs you now own, did they just tell you what your ALT/AST and VL was, or did you get actual copies of ALL the labs they had done on you ... were there any other lab results? Like LFT's/liver related labs, or whatever?

I might be away for a couple days soon, so I am VERY glad to get your news in case I am out of communications for a bit.

Hang in there, i am very glad for the good bits of news you relay today.

Oh, forgot to ask ... HOW much steroids had they been giving you when you were on the chemo?? I assume you got the steroids starting right from the first round of chemo? So, how much (mg's), and how often, and how long did they have you on the steroids? You had mentioned it was a large dose?

Later, C.

One other thing, Ash. I can change the title using my admin magic, if you want to. Since you are now On Treatment, it’s better to start a new thread in that section. It keeps the New Member section geared toward introduction and not the actual treatment aspects.

Hi Ash,

That’s great news indeed! Fast results are always nice to see and tells me you’re responding as well as could be asked for. Epclusa and all of these new drugs are a blessing.

Your test interpretation is correct, but let me explain the last one. The Lowest Level of Detection, is often referred to as the LLOQ or Lowest Level of Quantification. It pertains to the equipment used to quantify the actual viral load (count). Backup a decade and that number was 500, then 100, 50 and many labs now can quantify down to 7. Regardless of the LLOQ, if the test is below that number, to be clear, it must include the term Undetected or Not Detected to be considered such. We sometimes see the LLOQ below the threshold, but the test is still Detected. That indicates the patient is almost there, but has a few stragglers hanging on. The next test often comes back undetected. You have obtained proof that you are below the LLOQ and are RNA undetected. Time to celebrate that!

woohoo ash! such awesome and comforting results  UND.

5

Ash, that is such good news!  I'm doing the happy dance for you and praying for good results with the chemo.

Ash, 

I never answered you about a thread for others who have had Ca (and HCV) and/or HBV, at the same time - no, there does not seem to be an exclusive Ca thread solely dedicated to an overall Ca group of people who also happen to have HCV/HBV at the same or near the same time as their Ca. Although we HAVE had many here (like i said before) who HAVE had a lot of experience with dealing with a Ca treatment or dx at or near or before the time their HCV was treated. There seems to be no handy one-stop shopping thread that has been created as a category for this. Some have come on relaying their hx of Ca and then morph into the HCV journey.

There is a thread for liver transplant recipients here, some who have had Ca prior to transplant, some who had liver tumours treated in the past. Others who have had liver tumours treated prior to or after their HCV was treated. Others with breast Ca's getting treated prior to their HCV treatments. There was that fellow I mentioned before with lymphoma. But there seems to be no "one" catch-all/all-in-one thread. 

Also, you asked about how to change the title of this thread? I don't know if that can be done. Maybe it can be? I will ask one of the moderators if the words of the title of your thread here can be changed for you, but I am thinking that perhaps it is that you are wanting to make the whole of this thread to be an "on treatment" thread versus "a new members" thread? I don't know how either of those things can be done (re-threading or re-titling). 

How are you making out?/feeling? You spoke of fatigue, how is that going? You spoke of prior wgt loss, what is happening on that front? Are you having any problems with eating or lack of appetite? Hope you are not feeling too badly.

Funny you mention that you are "off" drinking cold water - me too, for quite some time now, i nuke my big glass of water everytime to warm it up a bit, even room temperature is not that appealing to me, it doesn't have to be boiling hot, but it just seems to go down waaaay more pleasurably if it is hot/warm and NOT cold. Funny us eh? I seem to prefer hot water to my morning coffee as well! I find myself drinking my morning hot water and i am heading for a refill, while my coffee is still sitting there getting cold. So I have been kinda "off" coffee as well for some weird reason. Warm and hot water has been my mainstay for quite some time now.

Later, C.

Ash, the water thing CAN be a challenge lol.  I found the gallon jug to be a bit intimidating for me, so i used my Nalgene bottles,  a pretty glass and a timer.  Goofy I know, but it works for me!  Also I saw that fizzy water can be absorbed just as well so I am going to add some to my day, in a pretty wine glass with fruit garnish.  Whatever works I guess!  Upside, my skin has never looked better!

Cheering you on in spirit

Sounds like you've got this, Ash.  A tip for downing the necessary water is to add a little flavor.  I used lemon, small amounts of powdered electrolytes in various flavors (to replenish what I was flushing), or any other flavorful add in.  You just don't want to turn it into a gallon of pop! Nothing better than good clean water.

 I also went the extra step to run the water through a purifier.  Whatever works for you, you will find that it helps.

Thank you Tig! I have found out with some relief that US gallon (under 4 litres) is smaller than UK gallon (4.5 litres), so I am not too far off the aim of 1 gallon per day after all!  I have a large mug measuring 370 ml so the aim was to drink 15 of those per day to reach one gallon, but of course I never managed this.  I manage 8 of those 370 ml mugs, so just under 3 litres.  If I can get to 10 if these I will be up to the US gallon I think.

Canuck - thank you for all the info - the appointment was with a liver nurse who gave me the meds for my second month, and booked appt for the final lot, this will be on 7 Feb.  The appointment with liver consultant on 5 Feb was cancelled, as it was apparently 'not needed' until I finish the treatment.  They took blood (three different bottles so I guess three different tests). I also had a CT scan on the same morning, which was ordered by my oncologist, rather than the liver specialist - this  was for both chest and abdomen. They said the results will be ready in a couple of weeks, hopefully in time for my oncology appointment on the 23rd January. 

I will ask for the printouts of all results then, also for the printouts of hep tests.  From what I remember seeing on the doctor's screen back in December, it said Hep A - negative,  Hep B -surface antigens negative, antibodies positive, and Hep C positive for all.  I will write an update when I get hold of those printouts.  In the meantime concentrating on getting that gallon down! 

Hi Ash,

Since Canuck brought up the 4 letter word, “Hydration”, I wanted to share one of our go-to pics. We make sure everyone gets the idea! Strive for that gallon per day, health permitting, of course. 

Here‘s your guide    

Ash,

Further to you being on the hepb therapy - the info you shared was interesting to me (but I am sorry that this hepb concern even exists that you are forced to attend to with yet another drug therapy)!

They must have done a hepb DNA VL testing on you - even if the VL count showed up nothing (no load), and likely they will do repeat hepb DNA VL testing on you, I am just not sure how often they might do this testing, I might guess as often as every 4 weeks, (I have NO idea really). You could ask them to verify all this for you, to share with you your records of any hepbDNA VL testing they have done, or will do on you, as you go along.

Good to know they started you off on the Hepc treatment at exactly the same time they instituted the hepb therapy, and that they will continue the b therapy when you have finished the epclusa, and when you get back on your Ca chemo.

So, at anytime in your life did you think (even in retrospect) that you may have experienced some jaundice?, even slight, or (in retrospect) experienced some subtle liver infection signs? Anytime in your past, had you ever had any routine hep a or hep b vaccinations?? 

When they finally got around to doing the bloodtests to check your hep a/b immunity levels, and thus also discovered your hep c, it would be interesting to know what they found with your initial hep a/b immunity status(s). For hep b - you can be "surface antigen" positive or negative, and be hep b "core" positive or negative. There are more testing parameters than these, but these would be fairly informative as to further reasons why they might decide to start you on hepb therapy when you do not have a B VL.

You have some fatigue ... is it possible to guess if there is current drug culprit behind the fatigue (the epclusa, the entecavir, or is it just you and everything)?, or maybe all of the above??, do drink lots of water to see if this assists with the fatigue, but it is never a mistake to keep very well-hydrated when on these drugs period. 

You had a Thursday (yesterday) appointment? How did it all go? C.

 Ash,

You were saying to Tig ... "Thank you for the fibroscan info. I got quite a bit of contradictory info so far, the charts suggest 12 or sometimes 14 as the cut-off line between fibrosis and cirrhosis, but I was definitely told at our hospital that it was 9.  Perhaps I misunderstood, and she meant it as something along the lines of '9 is when you start to worry about it'.  At the same time I was told by another that MRI is the best way to establish the level of damage, and so the 'multiple regenerative nodules' is a bad indicator associated with cirrhosis. Either way, it looks like my 7.9 score is good news then!"... 

You are right, there HAVE been different Fibroscan Fscore scale cut-offs used that say ... "over 12.5" kPa's AND "over 14" kPa's equals an F4. Even within this site you will find threads and info containing both the scale cut-offs you mentioned.

When I had my fibroscan done in 2015 by my Canadian specialist, who was under strict guidance of USA Gilead for administering my trial ... their upper limit for the "cut-off" (in order to be classed F3) ended at 12.5 kP'as, when my kPa's reached 12.6, then that technically put me into the F4 class. My providers remained to use that same scale with me until quite recently, when i found out they have made some changes to upper/lower cut-off limits in the F2 and F3 class range - i have yet to find a postable copy of my providers new scale reflecting their small changes (the explanation of the recent changes they adopted was only verbally outlined to me). But, both the one Tig showed here on your thread and the one they used for me from 2015 to 2018, these parameters can still be found referenced on this site and elsewhere.

Yes, dif countries/docs using dif Fibroscan scales does make it confusing!

But the more reading you do, you can see that some people have far firmer livers than just 12.6 or 14 kPa's (F4) - the kPa measurements can go much higher, stiffness measurements go up past 70 kPa's!, so, VERY good you are only (likely) measuring up at 7.9! An averaged fibroscan kPa measurement score is (merely) just a very good tool, ALL other factors, combined (blood tests, all forms of imagings from U/S's, to MRI's, to CATs, to PETs, and a doc with good experience in interpreting everything), paints you the best "guess". I like it when they use all the testing tools available, repeatedly. If not all the tools are used, if they are not combined, if each one is only looked at in isolation, then the data might be more approximate and limited. Chances are your 7.9 may be close, it would take more varied assessments and perhaps more repeat assessments to form a "more certain" guess at how firm, fibrotic, or sclerosed/cirrhotic your liver might be. But it does not sound (by your kPa number alone) to be high enough to be classed F4. So, yes a good thing.

The data of a single fibroscan shouldn't really be looked at alone (in isolation). The info might be too skinny or it could be skewed. Quite a few things can make the results somewhat over or under-accurate (to degrees) - influences and variables such as also having a fatty liver, ascites, tumours, simply being obese, or operator error!

BTW - since cure, my liver has made a remarkable recovery from F4 (12.6) to be within perfectly normal limits, with stupendously low Fscores now. There have been others like me too, one lady said her doc said he has been seeing this kind of recovery post-cure.

If they did not keep you in the dark so much, if you had access to copies of all your own "written" imaging reports (aside from fibroscan results), for U/S's, CAT's or MRI's, you could be reading for yourself what the radiologists report is, what his actual words are, when he describes what he sees on ANY of your imagings, what his "interpretations" are on each one of your imaging sessions you have had done thus far. I am sure you have probably had a fair bit of imaging done thus far, so there would no doubt be written descriptions on anything they have seen via imaging, any tumours, nodules, indications of cirrhosis, enlarged spleen, any abnomalities they might see. You can request a copy of any written radiologists report they store in their imaging records dept, for you to have for your own records at home, you can request copies of any of your radiologists reports usually right at the dept where the imaging was done. Where someone had indicated "regenerative noduales", reading these reports yourself (and the prior and later ones as well) pertaining to changes in the liver nodules, those might be more revealing if you were suspecting you were more fibrotic/cirrhotic than they have indicated to you.

That's all I can think of for now. C.

3-4 liters worked for me; no worries. you will drink more if your body tells you it needs more

Canuck, I don't think they found any VL with B, they found Hep B antibodies indicating that I had it in the past and it must have cleared up by itself.  But they are worried that it can reactivate either due to Epclusa or chemo, so I will be taking Entecavir even after the end of Epclusa.  I will be taking it alongside chemo and up to 6 months after end of chemo. Apparently reactivation of B on chemo is very acute and can be fatal due to low immune system (which makes it even more surprising that they have not tested for it at the start of chemo).

(I haven't read all the old threads yet, but if there isn't already a thread dedicated to info about cancer and hep, perhaps I might start one, as I have accumulated quite a few articles and links about it. But I don't want to duplicate what's already in existence, so if anyone remembers such a thread, please let me know, I will look for it and add to it instead.)

(also - have been trying to rename the old 'hello, new here' thread into something like 'Ash and a twin-headed dragon', instead of opening another thread - but doesn't look possible, should I just start a new one and copy some of the info from here to over there?)

-- Edited by Ashenvale on Monday 7th of January 2019 04:25:13 AM

-- Edited by Ashenvale on Wednesday 9th of January 2019 06:15:22 AM

Tig, hope your Dad gets better soon, I am wishing all the best to both of you.  Thank you for the fibroscan info. I got quite a bit of contradictory info so far, the charts suggest 12 or sometimes 14 as the cut-off line between fibrosis and cirrhosis, but I was definitely told at our hospital that it was 9.  Perhaps I misunderstood, and she meant it as something along the lines of '9 is when you start to worry about it'.  At the same time I was told by another that MRI is the best way to establish the level of damage, and so the 'multiple regenerative nodules' is a bad indicator associated with cirrhosis. Either way, it looks like my 7.9 score is good news then! 

Cheddy - indeed, and it feels so good to talk to people who 'get it' (as you said earlier)!

5-1-18 - trying to get that gallon in, really difficult. I just about manage 3 litres.  For some reason I have gone off cold water, just can;t take in more than a few sips.  Hot or warm I can down a large mug at a time.  So I only drink warm now which makes it more difficult to organise.  I try to get extra in by having soups and smoothies instead of normal food, nit sure if it's cheating or still counts!

LilB - thank you, and I saw in your thread that you have started your treatment too, well done and good luck!

Canuck wrote:

I am surprized or at least confused as to WHY someone like you who was obviously quite ill to begin with (needing bowel surgery for bowel Ca) and then requiring chemo and heavy duty steroid therapy for same, WHY (by the time of the chemo and steroid use decision) they had not already known about your hep b, WHY they had not already made hep b assessments prior to starting chemo and steroids, WHY they had not checked for hep b first/

---

 My thoughts exactly Canuck.  I am guessing it's cost-cutting and general lack of joined up thinking.  Our NHS has to follow policy, which works well if the policy in question is useful or even in place. Checking for Hep isn't routine here, just a recommendation, based on whether or not they perceive you as belonging to a risk group.  The 'risk group' is interpreted quite narrowly, although a few articles suggested that our whole generation should be considered a risk group where hep is concerned. But here it's like sitting there with a 20-year-old nurse asking you 'any history of drug use'? That's how the risk group is established - which is back to the 'stigma / perceptions' issue mentioned in tanner's thread. 

My consultant oncologist almost apologized for sending me for hep test - "oh it's only to rule it out, you are obviously not a risk group, very unlikely you'll have it'. This made it much harder psychologically when the results came through and she had to break the news. The liver consultant had a much more pragmatic attitude, he was also surprised that hep was not tested immediately, as my enzymes were elevated even before the surgery. I guess other specialists are simply not as up-to-date about hep. 

It was the same with cancer, I was fobbed off for weeks (mid March to late May) with 'oh it's probably just a bit if constipation, take some painkillers and laxatives' - even though I was telling them I am not eating, I lost 20 kilos in three  months since Christmas without trying (couldn't get rid of excess weight for years, but now it just fell off).  I had a lump which was easy to feel and I was telling them that it had not changed in shape or size for months - but still same answer 'well try these other laxatives'.  Whilst all this was going on the cancer was pushing into other organs and spreading into the lymph system.  They did take various other tests, but it was 2-3 weeks between each step if you know what I mean (rather than fast track, as you would have with cancer suspicions).  Anyway, once I got into the hands of specialists, things moved fast and the care was excellent.  The problem is usually getting there, a lot of time is wasted at the GP level, or when you are treated by one specialist team, but your condition requires another specialism.  Right now it is OK, as my care team officially includes both oncology and hepatology staff but unfortunately it took time getting to this point, and time is not on my side cancer-wise. 

It's one of those things - you can't have something for nothing, always trade-offs. You can have free universal care, which is great - but then it still requires resource (and time for the doctors to read up beyond their specialism and to see patients properly -  they have like 5 min per patient, then go home to their own daily problems).  I am just grateful that things are moving, that on balance the care has been very good and that I haven't had to worry about being able to afford it.  I should probably go post in Iris's 'grateful' thread ;)

Ash,

This gal, Canuck knows a lot!!

Canuck, As usual, good work!  You are so very well informed.

Ash,

 Thankyou for providing very clear and thorough info. You are a good, methodical writer and historian (and speller!)

Yes, it was the chemo drugs that I was wondering what you had been on, and if other than the original bowel surgery, whether chemo was going to be the only other therapy for the Ca. Thanks for sharing all that. You have a lot of drugs and the conditions that go with them to be familiar with! You need to be a doc to be a patient nowadays. You got me well straightened away.

Great sig line - you should also add into your sig. line - "Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019".

Yes, you and Obs said it, everything goes better without the hepc, and thankfully hepc WILL be easy to cure for you. You are right, you are fortunate to get epclusa, goodstuff. And I am right, that the Ca has no bearing on how potent epclusa is. Epclusa has an astounding cure track record. 

Yes, do keep on them to provide you with important and frequent testing and feedback. Attempt to gain the best cooperation you can out of them. I had to spell it out for my doc once, that being tested, repeating the testing and having copies of all of it, was very reassuring to me. Lab results actually belong to YOU anyway, and you do have a right to have copies of them and to know every nuance of them. Having accurate lab detail comparisons at a glance and meaningful communications/interpretations from them is important, if you are like me, I need and want to know everything!, I find it helps me. You ARE having a LOT you are having to going through, they should certainly be understanding of your need to know and to be well informed/apprised. Many folk (over on this side of the pond), can sign-on to receive most copies of their own labs via an on-line computer route. You might consider seeing if that option could work for you, if you cannot enlist their better aid in keeping you well-informed and less in the dark.

It sounds like maybe they ARE giving you your 4 week hepc labs, I suspect there may be many OTHER labs they are drawing too. Aside from your LFT's and VL's for hepc, you are going to want to know what blood tests they are using to follow your hepb and entecavir therapy, AND aside from the many other bloods will likely be dong on you all along, just make sure another frequent one, that they should be doing is to watch your kidney function. You and Obs are right about your liver having to do work to deal with all drugs, but many drugs are also dealt with by kidneys. So, both of these workhorses liver and kidneys need to be watched. When taking entecavir (or sof for that matter!) kidney function is watched. They should be telling you what your first hepb DNA VL count was, and what all subsequent B VL counts are, and how often they will be doing B VL's and what labs they will be using to follow your B. Obs is also right about drinking lots of water for all the reasons she mentioned but I would beg to differ only in that it just MAY help with fatigue feelings (sometimes)!

Yes, many things can insult your liver and your ALT can be a useful indicator of this (from hep c, to hep b, any kind of hepatitis, to tylenol overdoses to alcohol abuse to oh quite a lot of things!) - specifically you had mentioned chemo and it's potential to upset the liver applecart. I am no doc, but the steroid therapy you were on could have well played a big part in sending your hepb and ALT to spinning (JMunprofessionalopinon). In fact I am surprized or at least confused as to WHY someone like you who was obviously quite ill to begin with (needing bowel surgery for bowel Ca) and then requiring chemo and heavy duty steroid therapy for same, WHY (by the time of the chemo and steroid use decision) they had not already known about your hep b, WHY they had not already made hep b assessments prior to starting chemo and steroids, WHY they had not checked for hep b first/and thereby likely discovering the hepc back then as well!! I read some articles that said that Ca docs do check their patients for B and C and other liver issues as well checking for kidney function, and other organ issues, they look for a multitude of conditions of which they should know about, prior to chemo/and systemic steroid use. I wonder why they did not/could not have known about your B and C prior to the Ca chemo and steroid use! Now, saying all that (out of my medical ignorance), I am also guessing that had your B & C been discovered right away, or at least say at the time of your bowel surgery, that perhaps you would have still had all these treatments, just in what order and with how much delay between them might have been the questions, perhaps you may have had the B and C drug therapies started first and the Ca chemo and steroids later.

We have had others here with Ca conditons that were going to require various therapies, including various chemo therapies, TACEs/ablations, to steroid use, and people with other conditions that were probably going to require steroid use, and of our people who had liver Ca, many had their liver tumour treatment completed prior to their hepc treatment, others had certain Ca treatments/or conditions put on the backburner until they had finished their hepc treatment (with that "treat the hep c first" while the other condition(s) can "wait" scenario - a fellow with a B lymphoma comes to mind) -  and BTW the lymphoma guy had his lymphoma resolve post hep cure (and last i heard he never did have to have any further treatment for his lymphoma, as they no longer found any evidence of the lymphomas existence)! We had a vasculitis guy who was just about to do steroid therapy for his vasculitis, until they thought better of it, and postponed all that until after he completed his hep c treatment instead. 

Well, that is all i can think of at the moment to bombard you with!, drinks lots, rest, do you have good support at home? C.

Welcome Ash,

I'm glad you are here.  You've found a really knowledgeable group of people who have been through HCV treatment or a on it.  I found that nobody else really "got it" including my medical team.  Why would they, really, it's so personal.  This team saved my sanity and pulled me along when I was on one of the older (but not really old) treatments.  Things are better these days, with new DAAs.

Speaking of things being better these days.  I had a remarkable recovery.  I hadn't felt so well or optimistic in a long time.  I got rid of more side effects than I knew I had.  

You've been given a lot of terrific advice below so I will leave it at this.

Keep us up to date and add any new info to your profile and/or signature line.

You're a tough cookie, Ash.  Hang in there!

Cheddy

ash's thread

yes , water, water ,water we all swear by a gallon a day