TOPIC:

Hi All;

At end of treatment I visited Tassie but while there; was feeling unusually dysfunctional - wondered whether it might be Tx withdrawal or HCV relapse. One night rocketed out of my sleep from a huge death dream. When I returned home my Dr told me that I had HCC tumour. It started to show on MRI about 8 weeks into my HCV Tx and grew to 15mm by 24 weeks. still small.
I thought I had Tx options like Tace or RFA but it seems that my ascites might deem me ineligible for the Tace; and possibly even the RFA (although Im less clear in my grasp of what was said about that). The Specialist is away for another 1-2 weeks and I feel time is running short. . I just want to know where I stand. Im still hoping its a wrong call again - and next MRI dispels the HCC markers by which they generally make these assessments. Its all a bit dodgy without a biopsy at this stage - but they don't do biopsies though to avoid seeding any HCC further.
I wouldn't have shared all this some time ago because late stage news isn't so relevant to early treaters that I thought largely comprised the bulk of forum members. However I see that cirrhotics and F4s comprised a reasonable proportion of Redemption subjects. Im not seeking tea & sympathy - just sharing and any information, advice or ideas from members here.
Woobia is right this HCV is a bastard. You never know what major blow might derail your life and burn up years before you know it. We still don't know the full effects of HCV - until end stage. So Listen - I reckon once this bug has any symptomatic traction - a good policy may be to treat and recover as soon as possible. cheers

Hi Archer,

I hope my little bit may be of some help. It is basically advice my G.P. gave me in 2012 when I found out I had a HCC.

"You (that is me) have to keep on top of this - make calls and follow it up and don't rely on the 'chain' (just making an appointment and waiting) being safe; make sure it is". He also explained how the 'system' works but it only needs one weak link....

Me being here is evidence that the system works, but then again I found it has a lot of moving parts and needs a driver - the only reliable candidate being me. HCC is less of a worry if you act this way I think.

Best wishes for dealing with this.


Yours


Jeff

Thanks Jeff; Very Good advice. The docs do seem to have moved fairly quickly on this, already a Gastro, Interventional radiologist, surgeon and hepatologist consulted since my first appointment when I got back. Also - all the info has gone to a hospital panel whilst the Hepatologist is away briefly. I should soon be informed of any real options. cheers

They move quick!

You involved with the RPA? Once I got there I felt like my backside was spinning with the tests etc. And once there I handed over the 'driver's' keys and things went well.

Hope/know things will do well for you.

Oddly enough, I found that having a HCC for me mainly just added another reason to dislike the virus.

Yours


Jeff

Hi Archer, Sorry to read you now have this to deal with too.

Maybe you could contact LiverMultiScan folk, (non-invasive and no contrast dye needed).

They were running a trial and I know they were coming towards the end of it, but they may be able to advise how you could get one.

perspectum-diagnostics.com

perspectum-diagnostics.com/livermultiscan-study-now-recruiting/

I hope all the help you need is forthcoming soon.

LG

Only just seen this Archer as I haven't been as active as I used to be on these forums. Not sure if events just conspire against you, but somehow or other you always seem to be left 'snookered'. Tea & sympathy ain't gonna be of any use at this stage of the game, but you're still not exactly getting any good cards are you.

No experience of HCC so I'm unable to offer any real input on this, but wise words there from SC who has obviously been there, done it, and is now living proof of how things can be turned around. As Jeff has already said it's important to make sure you keep both hands on the wheel, as it's your bus that's being driven here. It does sound like you've got things moving though, just watch out for snags and try to maintain at least some kind of momentum.

Having said that .......... ! It must be a bloody worry Archer to now have that particularly nasty complication on your plate. Support has and should always be a big word in the forum scene, and I just wanted to chime in and offer mine ...... to a very dear old friend.

Dear Archer I hope you are getting the support you need since your last post.

Hey Skank, my best wishes to you too and ditto the above.

LG

Same here Archer. No tea and sympathy??? Hard not to ... can't help but wish it wasn't happening to ya ... But, just wanted to add my voice to all those who want you to know, we're pulling for you to get through this successfully. Matt

Hello Archer,.... I have read some of of your other posts, and appreciate reading them. I am sorry to hear about your current situation and the HCC. I wish you the best in getting a treatment that will not compromise your situation. Hopefully sooner the better. Sincerely,.. Fara

Hi Archer,

Feeling for you.
About time we talked again soon, can you ring me?

Are you coming back to Sydney?
Love you girl. Be strong.

Hi Skank!! Good to see you here!
How you going my friend?

Love Cindi xo ( My young J doing well, all good with him )

Hi Archer,
I really really hope you are getting lots of good support and are being provided with options for treating your current medical needs. Wishing you all the best Archer. Coral

Sabrecat - thanks - reminders about keeping ourselves informed, in control and in the drivers seat are always welcome.

Hi Archer,

my thoughts are with you too,


Jeff

Hi Archer
I'm sorry for this rotten news you've got going on.
I have also known you from forums since 2012 now and I know you have been fighting hard and now this curve ball. I can't add anything but to wish you strength of mind and hope and trust and to be cured and free
Love from Ariel (who blogged in a different name on peginf on another forum and remembers your story well)

Take care Archer I hope we hear good news from you soon.

Hi everyone -

I want to thank you for your kind words and wishes. Thought I might provide an update. However it is with some reluctance - because I always experience an aversion to sharing poor news - much better, the optimism of SVR, and increasing opportunities for people succesfully finding their way through these challenging times.

* I completed treatment end April/May 2016 - later learned I had SVR'd. Thank You James & Greg for your courage, hard work and humanity.
* diagnosed with HCC tumour mid May 2016
* the MDTeam at my hospital recommended that given the risk (low) of liver decomp (CTP B8) with a TACE (transarterial chemoembolization); an RFA radiofrequency ablation (lower risk of seeding) might be the better intervention. I was comfortable with this option – (RFA) more curative versus palliative (TACE).
* however, the interventional radiologist found the tumour was unfortunately located subcapsular and posterolateral; difficult to see under U.S. (ultrasound)
* decided to do a TACE ie to light up the tumour with Lopiadol for improved visibility under U.S & C.T while doing the RFA. The “partial” TACE was conducted Sept 11 - some doxorubicin (chemo) was also added & PVA particles to slow blood to the tumour.
- the tumour has shrunk to 12.5 mm
* An RFA was scheduled for Oct 11 - which with reasonable optimism - I hoped would fully ablate the tumour.
* However on Sept 24, within 2 wks of the TACE I was admitted with real bad abdomen pain - portal vein thrombosis occluding the blood supply between liver and bowel.
* Given the surgery risks with my overall medical status, and despite the bleeding risks with my varices - Heparin infusion was first trialled for blood flow. Fortunately some improvement - six days close monitoring - had good public hospital care - and since being discharged have been injecting 70mg Clexane ( low molecular Heparin) twice daily - some improvement - risk remains – still continue Clexane.
* RFA previously scheduled for 11 Oct was deferred, I was discharged 29 Sept and next appt 24th November. Was concerned about the RFA delay because successful, complete ablations are more likely with tumours under 3cm.
* By Nov 24 appt, however, the MDTeam had again reviewed my case and decided that with the RFA so close to my lung - radiation might be preferable. (Didn't understand this at first because they were prepared to do it earlier)
*Radiation has never before been mentioned in my entire medical "experience"; nor does it routinely appear in article accounts of HCC treatment progressions
* This did my head in a bit - I spent the next two weeks in a hole.
* Started again, the hard work of researching yet another treatment - but "radiation" is a discipline not readily engaged by a novice to physics, associated technology and medicine.
* “They” are recommending Stereotactic Body Radiation Therapy SBRT - involves intensive planning. The "machine", a linear accelerator beams waves through the liver from various points - intersecting at the tumour thereby "collectively" providing a much higher radiation dose than would ordinarily be given in standard radiation treatment. Dosing and beam trajectories are pre-planned” so lets hope there are automated contingencies for human error in a maths miscalculation or judgment of safe dosage range given a patient's Meld or CTP.
* While scouting - I encountered a radiation treatment known as proton therapy which I find less aversive. It also targets tumours with higher than conventional radiation treatment doses but spills far less into surrounding healthy tissue. Especially good for anatomy like brain, lung, liver.
* (ASIDE) Proton therapy is not available in Aus. but possible in U.S; Europe; India, Korea; Japan; China - which is a travesty when considering paediatric oncology – Aus children with brain tumours have no access to proton radiation which is less likely to impact on their developing brains. Still I don't have to tell the HCV community about the rationalization of our taxation health dollars.
* There seems to be a team of very good people here in Australia whom for some time have been trying to mobilise private, corporate and Govt funds toward the establishment of a prototon therapy facility. It is hellishly expensive – (like trying to buy the Hadron collider) but closer scrutiny of mis-expenditures (like New Year fireworks, ministerial pensions etc) might help.
* I wondered why I hadn't heard of this before - apparently it isn't allowed to be "advertised"
* Costs in Korea, India etc - in even more "affordable" locations treatment costs alone are around $ 40-60,000 without factoring travel, accommodation (treatment is in "fractions" & depending on cancer type/status can require stays up to 2 mths) and some reserve in case of crisis. Too much for many of us.
* I have an SBRT simulation and planning session scheduled for next week – I still feel uncertain . .
* Apparently having still a relatively small tumour - SBRT is ideal treatment (ie difficult location etc). But when weighing up the likelihood of success against risk - I worry about RILD (radiation induced liver decompensation) - radiation toxicity which can emerge immediately or it seems up to months later.
* I have considered cancelling next weeks planning appt ( the treatment from all the medicos throughout this recent journey has been quite good - so I don't wish to waste their valuable resources) until I have had just a little more time to get my head around it. Although I understand I have to treat very soon. On the other hand I don’t want this opportunity to be lost – they may be limited. Indecision is a nightmare.
* Cirrhosis with HCC is an extraordinarily complicated condition - like other illnesses with co-morbidities. Treating the HCC when you have cirrhosis - isnt like treating cancer in an otherwise relatively healthy body. The underlying liver disease has numerous life threatening complications of its own - further and acutely compounded by efforts to treat HCC.

* So -

* this is what happens when availability to medications is too long denied
* It is also what happens to people who become complacent when they have easy HCV treatment access - and delay treating once it is clearly progressing
* or who fail to monitor their livers once they are cirrhotic EVEN after they have successfully treated their HCV.

I feel like the doomsday dealer - but maybe there is the occasional room for a cautionary tale.
NEW YEAR RESOLUTION - LOVE IS ALL. HEALTH CARE IS ESSENTIAL.

Hi Archer
I feel for you being in this position. Wishing you luck in dealing with it. Hugs.