Journal of Jonathan's hepatocellular carcinoma

On another hub, I am writing a journal about Jonathan's cancer and how it is affecting our family. 

This blog is to help friends and family who want to keep up to abreast of any development in Jonathan's health. It will be as factual as I can make it and I shall endeavour to update it every time we learn something new. 

This blog is not meant to avoid face chats and texts. Feel free to call. It's meant to answer questions.

Because of diabetes and slight abnormalities in his liver function and mild cirrhosis, J has been monitored for several years. 

About a year ago, an MRI scan detected slight abnormalities in J's liver, which, after further tests, were deemed to be tissue regeneration.

Mid-November, after further tests, the abnormalities had grown and there were more of them. It was decided they were cancerous. There is a node of about 5cm and a few small ones. They appear to be in both lobes of the liver. The consultant booked J into hospital for an MRI and a series of tests to see whether King's would put him on the transplant list. He mentioned different forms of chemo related treatments which might be tried otherwise and Sorafenib which is a drug NICE does not pay for.

The tests were carried out on the 9th and 10th December, the immediate feedback seemed positive. Eventually King's indicated that they needed the MRI scan to reach a conclusion. 

The MRI happened on for Christmas eve. Jonathan then had an appointment to see the consultant on January 6th.

We both went to that appointment. King's, it turned out, have not come to a decision. They should decide on January 13th and we should hear on the evening of the 14th.

The consultant made it clear that as things stand a transplant offers the only likely cure and by far the best chances of survival. He was careful not to raise our hopes too high. Recently criteria for accepting recipients have altered, but J wouldn't have been offered one by the old criteria. This is because of the number and the size of the nodes.

He described what treatment would be followed if the answer was no. The most likely option seems to be a drug called Sorafenib/ Nevaxar, which has recently featured on the news because NICE will not approve it. There is funding which can pay for such drugs, but it takes time to access and cannot be applied for until the question of a transplant is answered. 

Another form of treatment, chemoembolization, will be considered but might prove to be too dangerous to try as J's hepatic portal vein has some narrowing caused by a thrombus.

It may well be worth volunteering for experimental drugs as this field has a fair amount of research being carried out now.

I shall update this on Friday January 14th or when we have news.

The nodes are too small to cause any problems at present. They will not make themselves felt in the near future.

Jonathan is carrying on life as normal. He does not feel ill, just as if he has a sword hanging over him.

On Friday, Jonathan had a hasty call with his consultant in which he learnt that he had not been accepted onto the transplant register. Chemoembilization, earlier discounted due to thrombus in the hepatic portal vein, had been selected as the optimum form of treatment. This should start in a couple of weeks. It involves putting a catheter through the artery directly into the liver, sending the chemotherapy drug through it and closing off the blood supply to the tumor. 

This treatment is described as palliative: it cannot provide a cure, but will hopefully shrink the tumours. Contrary to what we were told originally, there is a possibility that the transplant team will reconsider their decision if it does.

There is another very slight possibility:a  domino transplant. Only 3 of these were carried out in the UK in 2009. This is where a person suffering from a rare disease in which their liver starts producing a lethal protein have a transplant, donating their liver which is presumed to behave in the recipient for many years.

Jonathan should be going into hospital overnight on the 27th January for his first chemoembolization. He then has a follow up appointment on the 10th February. It's an overnight stay and it's not supposed to be overly painful or debilitating.

Today, Tuesday 25th January, Jonathan got a phone call from the hospital to say that his treatment has been put back from the day after tomorrow until February 8th so that it can be done by their top man.

Two and a half months after the original diagnosis, treatment has begun. This morning, Jonathan went into Derriford. He was given his chemoembolization sometime after twelve and then some platelets as his count was low. Apparently, because of this, he was given half a dose. The consultant said the procedure was straightforward. He wasn't in any pain or discomfort an hour afterwards.

Jonathan came home feeling fine today, which is the next day). The only after-effect he has described is a strange taste.

After the first treatment , there was really nothing more to report. Jonathan had blood tests done on the Friday and Monday after the treatment and as we never heard anything more about them, we presume they were acceptable, whatever that means.

Jonathan was duly booked in for and underwent the second of three chemoembolizations.  This time, they took him in the night before so as to get blood results early and pump him full of platelets, which he did need again, early on the morning of the procedure. Everything was pretty much the same. Instead of having a top radiologist carrying out the TACE, this time he had the director of surgery. It gave him the opportunity to ask about the "Milan Criteria". That is the criteria on which decisions about a person's appropriateness for a transplant is decided. Jonathan had it confirmed to him that using the size of tumours is only vaguely rational, in that the more aggressive the illness, the higher the chance of reoccurence after transplant; what it does supply is an accepted way of rationing because there are just not enough donor livers to go round.

Immediately after the treatment, Jonathan is supposed to remain supine and still for about 6 hours, to make sure the wound where the artery is entered heals nicely. 

The day after the treatment, Jonathan came home and slept for England. Apparently, one of his room-mates was a massive snorer and so he didn't get much rest in hospital. Once again, he has a vile taste in his mouth and is probably a bit fatigued, but otherwise has breezed through the treatment yet again. The next treatment is scheduled for April 7th, after which the efficiency of this course of treatment will be reviewed and decisions will be taken on what to do next.