ONWARDS AND UPWARDS - a diagnosis and treatment of Hepatocellular carcinoma (primary liver cancer) diagnosed August 2010, presumed caused by 30+ years of chronic hepatitis B. And a search for how to be healthy living with cirrhosis presumed caused by Autoimmune hepatitis (diagnosed April 2011)
Tuesday, 26 April 2011
Thursday, 21 April 2011
AFP time again
Nearly 11 months since the start of this blog. Nearly 3 months since my previous AFP tumour marker test. Where has the time gone?
A little early taking the test this time, but I have my 6 month cancer check-up with the surgical team at the beginning of May. What with Easter and then 'Will 'n Kate's' Bank Holiday I'm allowing plenty of time for these results to come back in time for Mr O'Blimey's appointment.
Hope everyone is enjoying the gorgeous sunshine. I have a bottle of 'Liquid Sunshine' in the fridge with a Vitamin D3 supplement in it. Research suggests that many of us in the northern hemisphere (and those in the southern who apply sunscreen) are deficient in Vitamin D.
I've been taking twice the recommended daily allowance for a while now and got my blood test back today. I'm 'normal', but low normal. Looks like I can up my daily intake again to more like x4 the RDA and still be 'normal'.
Anyone out there feeling a bit tired, or achey, for no particular reason, try taking extra Vit D3 and I'm pretty sure you will feel better.
A little early taking the test this time, but I have my 6 month cancer check-up with the surgical team at the beginning of May. What with Easter and then 'Will 'n Kate's' Bank Holiday I'm allowing plenty of time for these results to come back in time for Mr O'Blimey's appointment.
Hope everyone is enjoying the gorgeous sunshine. I have a bottle of 'Liquid Sunshine' in the fridge with a Vitamin D3 supplement in it. Research suggests that many of us in the northern hemisphere (and those in the southern who apply sunscreen) are deficient in Vitamin D.
I've been taking twice the recommended daily allowance for a while now and got my blood test back today. I'm 'normal', but low normal. Looks like I can up my daily intake again to more like x4 the RDA and still be 'normal'.
Anyone out there feeling a bit tired, or achey, for no particular reason, try taking extra Vit D3 and I'm pretty sure you will feel better.
Tuesday, 19 April 2011
Another scan
I had a Dexa scan today. It looks like this:
Something to do with checking my bone density. The machine is very expensive and is in our private BUPA hospital. A deal is done between the NHS and BUPA to pay for the scan.
After lunch took J for a first appointment to a new homeopath. For his eczema. Which hadn't been too bad for a long time but flared up on his arms and neck when he got taken surprise by sunburn in March. He has 2 pillules and instructions not to use mint toothpaste for a week (mint destroys the delicate balance of the remedy) so it's fennel toothpaste instead - yuk. Also no caffeine.
Something to do with checking my bone density. The machine is very expensive and is in our private BUPA hospital. A deal is done between the NHS and BUPA to pay for the scan.
After lunch took J for a first appointment to a new homeopath. For his eczema. Which hadn't been too bad for a long time but flared up on his arms and neck when he got taken surprise by sunburn in March. He has 2 pillules and instructions not to use mint toothpaste for a week (mint destroys the delicate balance of the remedy) so it's fennel toothpaste instead - yuk. Also no caffeine.
Sunday, 17 April 2011
See saw
This is for my Nomad forum friend Ceesaw. Thanks for bringing some much needed clarity to my state of indecision. You can never been down for long with a see-saw or a Ceesaw.
Thursday, 14 April 2011
Looking for clues
Letter today from Dr Al, the heppy doc at Salford.
Reassuringly long, detailed and thorough.
His conclusion:
"It is difficult to judge exactly what is going on"
"I am a bit reluctant to start treatment at this stage"
"I would like to look again at both biopsies from the cancer resection and the histology from February to look for further clues"
"I don't think we have all the information needed to make a decision and would like to discuss further at our next MDT meeting"
Tuesday, 12 April 2011
My surgery
..... was at the hospital featured in this Channel 4 'Dispatches' programme www.channel4.com/programmes/dispatches/episode-guide/series-88/episode-1
Sunday, 10 April 2011
Ain't no maybe
The more medics that get involved the more opinions there are!
Hep B has a definitive set of blood tests and definite look to tissue cells under a microscope.
There's no doubt that I do have hep B viral cells in my liver.
There's also no doubt that I have white blood cells actively bashing something in my liver.
Where the doubt comes in is what are they bashing?
Are they encircling the remaining hep B viral cells to stop them replicating and escaping back into my blood stream.
Or are they bashing an active autoimmune virus.
Unfortunately there is no definitive blood test for autoimmune. Its a collection of jigsaw pieces and an educated guess!
My GP cousin made an educated guess last November.
So did a British Liver Trust hepatologist.
So at the moment its 3-1 in favour of autoimmune.
4-1 if you count my gut feeling and insistence on the second biopsy.
I found some guidelines on the internet published by the American Association for the Study of Liver Disease and I score 14/17 or a 'Probable' diagnosis of autoimmune.
Having concurrent Hep B is very rare and makes it impossible to make 'Definite' diagnosis of autoimmune.
Should I start lifetime treatment, based on a rare probable?
Whether I do or dont, there will always be some white blood cell activity in my liver encircling the remaining Hep B cells, and slowly slowly progressing the cirrhosis.
Hep B has a definitive set of blood tests and definite look to tissue cells under a microscope.
There's no doubt that I do have hep B viral cells in my liver.
There's also no doubt that I have white blood cells actively bashing something in my liver.
Where the doubt comes in is what are they bashing?
Are they encircling the remaining hep B viral cells to stop them replicating and escaping back into my blood stream.
Or are they bashing an active autoimmune virus.
Unfortunately there is no definitive blood test for autoimmune. Its a collection of jigsaw pieces and an educated guess!
My GP cousin made an educated guess last November.
So did a British Liver Trust hepatologist.
So at the moment its 3-1 in favour of autoimmune.
4-1 if you count my gut feeling and insistence on the second biopsy.
I found some guidelines on the internet published by the American Association for the Study of Liver Disease and I score 14/17 or a 'Probable' diagnosis of autoimmune.
Having concurrent Hep B is very rare and makes it impossible to make 'Definite' diagnosis of autoimmune.
Should I start lifetime treatment, based on a rare probable?
Whether I do or dont, there will always be some white blood cell activity in my liver encircling the remaining Hep B cells, and slowly slowly progressing the cirrhosis.
Saturday, 9 April 2011
Disagreement
Saw Dr S in clinic yesterday.
He disagrees with Dr Al's diagnosis.
Dr S diagnosis is inactive Hep B with active polymyalgia
Dr Al diagnosis is inactive Hep B with active autoimmune hepatitis
Dr S treatment is no treatment for the Hep B and treatment if required for the myalgia
Dr Al treatment is suppress the Hep B while treating the autoimmune.
How do you get two consultants to agree?
Put them in a room with my GP as referee and let them thrash it out til they come to a consensus?
Thursday, 7 April 2011
Fifteen
I've just typed up my scribbled note which listed the tests ordered by Dr Al on Monday. I want to take the list to my clinic appointment with Dr S tomorrow. There are FIFTEEN! No wonder my veins were sore.
For Steve
This is Patterdale in the Lake District last week, in between April showers. I'm putting this on my blog for Steve, one of my followers, who is just over half way through his post surgery chemo for rectal cancer. Now that it's April May won't seem so far away.
Steve this is to cheer you up as I know you like photos of lil ol' England!
T took the photo whilst supervising a group of Undergrads who are there learning practical, in the field, surveying. He's gone back again today, and goes a 3rd time next week. There are so many students they have to do it in shifts
Monday, 4 April 2011
Dr Al drops a bombshell
Those who have followed my blog through 2010 may remember that in November I was asking for help confirming what I thought might be a diagnosis of autoimmune hepatitis. A British Liver Trust hepatologist and my GP cousin came to my aid with a yes, the phrase ’persistent florid activity’ in my first biopsy report could be suggestive of autoimmune. In December I saw Dr S in clinic, and voiced concern over my continuing fatigue, aches, pains and occasional feverishness. I’d made notes about autoimmune and highlighted some of my blood tests. On my blog of 7th Dec I wrote "We went through my Hepatitis blood tests and he looked at the notes I’d made about autoimmune. He still feels that Hep B is the most likely cause of all the problems, including the persistent inflammation".
He ordered a second biopsy, the one I had in February. This was discussed at the medical team meeting on 9th March. I scrounged the report from the GP last Friday and it was the reason for today’s appointment with Dr Al, the new hepatologist at Salford.
He read the reports and underlined bits, so I asked him what he was underlining. He said my history, including the speedy response to steroids plus the biopsy evidence of inflammation in the liver is suggestive of autoimmune hepatitis, and that was why I was there.
That left me speechless! I’d put autoimmune to the back of my mind and had been told by O’Blimey’s secretary that the referral was for cirrhosis.
Dr Al took another bucket load of blood tests – just to be doubly, trebly sure. I’ve had about 8 vials taken today, as I’d been to the GP in the morning to have Vit D and iron levels checked. Sore arms – argh!
It’s back to see him in a month to get the results and confirm treatment.
Co-infection with autoimmune and viral hepatitis is tricky. Standard treatment for autoimmune is immunosuppressants – just the ticket for bringing those pesky little hep B cells trapped in my liver back to life . Dr Al’s method is to give me an anti-viral to keep the hep B down, at the same time giving me immunosuppressants to treat the autoimmune. For life – b**ger.
The good news is, yes there is good news, that Dr Al doesn’t think the liver damage is too bad and that treating the autoimmune will stop its progress. It’s the Hep B, he thinks, that triggered the cancer.
Sunday, 3 April 2011
I'm a 'Silent Witness' fan
I've got as far as I can translating my liver biopsy pathology report. I'm amazed how much information can be got from a tiny sliver about the length of your little fingernail (10mm).
First; what they didn't find. The biopsy ruled out 9 different things. Did that mean 9 tests on this sliver?
It ruled out 'mass cell death' - that's got to be good!
It ruled out in 3 different ways evidence of pre-malignancy or abnormal cells suggestive of HCC cancer.
It ruled out iron overload (common in liver disease)
It ruled out Wilson's disease and primary biliary cirrhosis, 2 other forms of liver disease
It ruled out choleastis which is a blockage of the bile ducts
Second; what it did find.
It found evidence of cirrhosis - no surprises there - and categorised it as 'moderate' disease progression, in most but not all sections.
It went on to stage the cirrhosis by 4 different scores for inflammation.
I won't categorise the types of inflammation as they are gobbledygook, but think of it as 4 exam papers where the marks total 18, but you want a low not high score. I score 2/4; 0/6; 2/4 and 3/4 which totalled 7/18.
My guess is that when you reach 18/18 your liver is a gonner.
It found evidence of bile duct destruction (you need bile to digest food) which is reflected in my 3 out of 4 score, above.
It found evidence that the liver was having trouble digesting fats.
The above 2 findings re-inforce my belief in a healthy, low fat, easy to digest diet.
It found 'patchy positive' evidence of hepatitis surface antigen HBsAg - this is the marker that says 'this person has or had hepatitis B'.
What will be significant, is if the tissue tells whether the hepatitis is ACTIVE or INACTIVE. I've not fully understood this.
The good news is:- there is no evidence of a cell called a 'ground glass' cell (because of the way it looks). The presence of ground glass cells says WARNING: acute infection.
There is 'occasional' or 'patchy' evidence of various white blood cells. White blood cells are part of our immune system, and get busy when there are bugs invading us. Finding white blood cells in my liver might mean they are the remnants of Dads Army (see post 'War is Over') still knocking out any stragglers of hep B. Or it might mean they are attacking a new uprising. I dont know and it's on my list of questions for the hepatologist on Monday.
The good news (I think) is there is no evidence of something called 'granuloma' which is when the immune system encircles its enemy. Think John Wayne and a wagon train being encircled by indians.
Summary: Question to ask hepatologist - is the evidence of hep B in my liver cells suggestive of active or inactive hepatitis.
If the answer is inactive, good, I guess we continue to monitor.
If the answer is active, the next question will be 'what are we going to do about it before it makes the cirrhosis worse'.
First; what they didn't find. The biopsy ruled out 9 different things. Did that mean 9 tests on this sliver?
It ruled out 'mass cell death' - that's got to be good!
It ruled out in 3 different ways evidence of pre-malignancy or abnormal cells suggestive of HCC cancer.
It ruled out iron overload (common in liver disease)
It ruled out Wilson's disease and primary biliary cirrhosis, 2 other forms of liver disease
It ruled out choleastis which is a blockage of the bile ducts
Second; what it did find.
It found evidence of cirrhosis - no surprises there - and categorised it as 'moderate' disease progression, in most but not all sections.
It went on to stage the cirrhosis by 4 different scores for inflammation.
I won't categorise the types of inflammation as they are gobbledygook, but think of it as 4 exam papers where the marks total 18, but you want a low not high score. I score 2/4; 0/6; 2/4 and 3/4 which totalled 7/18.
My guess is that when you reach 18/18 your liver is a gonner.
It found evidence of bile duct destruction (you need bile to digest food) which is reflected in my 3 out of 4 score, above.
It found evidence that the liver was having trouble digesting fats.
The above 2 findings re-inforce my belief in a healthy, low fat, easy to digest diet.
It found 'patchy positive' evidence of hepatitis surface antigen HBsAg - this is the marker that says 'this person has or had hepatitis B'.
What will be significant, is if the tissue tells whether the hepatitis is ACTIVE or INACTIVE. I've not fully understood this.
The good news is:- there is no evidence of a cell called a 'ground glass' cell (because of the way it looks). The presence of ground glass cells says WARNING: acute infection.
There is 'occasional' or 'patchy' evidence of various white blood cells. White blood cells are part of our immune system, and get busy when there are bugs invading us. Finding white blood cells in my liver might mean they are the remnants of Dads Army (see post 'War is Over') still knocking out any stragglers of hep B. Or it might mean they are attacking a new uprising. I dont know and it's on my list of questions for the hepatologist on Monday.
The good news (I think) is there is no evidence of something called 'granuloma' which is when the immune system encircles its enemy. Think John Wayne and a wagon train being encircled by indians.
Summary: Question to ask hepatologist - is the evidence of hep B in my liver cells suggestive of active or inactive hepatitis.
If the answer is inactive, good, I guess we continue to monitor.
If the answer is active, the next question will be 'what are we going to do about it before it makes the cirrhosis worse'.
April Fool was on me
Back in November last year I was hunting a hepatologist. Ended up carrying on with Dr S, my GP and the surgical team.
Now that the February liver biopsy report (more on this in another post) has been looked at by the MultiDisciplinaryTeam responsible for my care, the decision has been made to refer me to a hepatologist - AT LAST.
A new clinic has opened at Salford Royal hospital, which is about 20 miles away.
It's led by a hepatologist transferred from the Freeman Hospital in Newcastle, a specialist liver transplant unit.
I'm hopeful he brings with him expert knowledge and it's a joint post with North Manchester hospital where my surgical team and the MDT team are based.
The appointment came as a shock. The MDT met and made this referral on March 9th, but forgot to tell me. Hey ho, why should I presume I matter!
A Salford hospital appointment lady rang out of the blue on Friday 1st April to check I was available on Monday 4th. April Fool of course.
Me: 'appointment, what appointment? You must have the wrong patient'
Her: 'Can I check your date of birth, yes that's correct'
Me: 'appointment, what for?'
Me: Panic - do I have to go to Salford for the second attempt at the endoscopy? Oh no, I don't want to do that.
Me: 'Who made the appointment?'
Her: 'Mr O'Blimey'
The fog starts to clear and I call his secretary, who explains. Phew.
I still don't have the Biopsy report, or the CT report, and would very much like to be up-to-date with myself (!) before I see this new guy. Hence my rush to the GP and the secretaries, yet again, coming up trumps by printing everything off for me, including a copy of the referral letter I never got.
These ladies are due some Easter egg treats.
Now that the February liver biopsy report (more on this in another post) has been looked at by the MultiDisciplinaryTeam responsible for my care, the decision has been made to refer me to a hepatologist - AT LAST.
A new clinic has opened at Salford Royal hospital, which is about 20 miles away.
It's led by a hepatologist transferred from the Freeman Hospital in Newcastle, a specialist liver transplant unit.
I'm hopeful he brings with him expert knowledge and it's a joint post with North Manchester hospital where my surgical team and the MDT team are based.
The appointment came as a shock. The MDT met and made this referral on March 9th, but forgot to tell me. Hey ho, why should I presume I matter!
A Salford hospital appointment lady rang out of the blue on Friday 1st April to check I was available on Monday 4th. April Fool of course.
Me: 'appointment, what appointment? You must have the wrong patient'
Her: 'Can I check your date of birth, yes that's correct'
Me: 'appointment, what for?'
Me: Panic - do I have to go to Salford for the second attempt at the endoscopy? Oh no, I don't want to do that.
Me: 'Who made the appointment?'
Her: 'Mr O'Blimey'
The fog starts to clear and I call his secretary, who explains. Phew.
I still don't have the Biopsy report, or the CT report, and would very much like to be up-to-date with myself (!) before I see this new guy. Hence my rush to the GP and the secretaries, yet again, coming up trumps by printing everything off for me, including a copy of the referral letter I never got.
These ladies are due some Easter egg treats.
Friday, 1 April 2011
CT result
After 4 weeks of no news I got frustrated with waiting, so got the report from my GP.
"There is no evidence of hepatocellular carcinoma" - Hurray
"Lung bases clear" - Hurray hurray
"No evidence of renal obstruction. Bone review negative" - Hurray hurray hurray
PS I also got the biopsy report, but that is 7 paragraphs of scientific and medical jargon which will take me all weekend to translate. However, the last line says "appearance is not considered diagnostic of autoimmune hepatitis" - cautious hurray.
"There is no evidence of hepatocellular carcinoma" - Hurray
"Lung bases clear" - Hurray hurray
"No evidence of renal obstruction. Bone review negative" - Hurray hurray hurray
PS I also got the biopsy report, but that is 7 paragraphs of scientific and medical jargon which will take me all weekend to translate. However, the last line says "appearance is not considered diagnostic of autoimmune hepatitis" - cautious hurray.
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