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 B 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.