Topic: Update from Ron Smith

It has been a little while since I posted about my condition, so this is a bit of an update.  But first, a potted history.

Diagnosed with intra-hepatic cc in July 2006, I had a partial resection in August 2006.  The cancer returned in February and the full right lobe was removed in March.  Started a chemo trial in April (Capecitabine given as adjuvant chemotherapy) but within 4 days was in hospital with severe chest pains, later diagnosed as angina.  Underwent angioplasty and the insertion of 2 metal stents into coronary artery in August.  CT scans in July showed 3 minute marks on the liver and it was decided to have more scans after 8 weeks to see if there were any changes over that period.

The CT scans in October now showed 10 lesions so there is no doubt that the cancer has returned.  Mr Powell, my surgeon is not convinced that the cancer is so aggresive that it has increased so dramatically in such a short time but, rather, suspects that there were more tumours in July but they just could not be seen.  Anyway, the bottom line is that neither surgery nor RFA is an option this time.  The lesions are too spread out that he could not get them all.  Mr Powell did, by agreement, refer my case to Professor Peter Lodge at Leeds and he has now written back agreeing with this prognosis and recommending chemotherapy.  This course of action had already been advanced and I have met with Professor Evans at the Beatson Oncology Centre in Glasgow.  His recommendation is palliative chemotherapy and it is my choice whether to start it just now or wait until I have symtoms.  Rightly or wrongly my simplistic view was that it must be better to start it sooner rather than later, so giving the drug the chance to act on smaller tumours.  The down side, of course, is that just now I am feeling very fit and well and the drug could affect me badly,  all without any actual benefit.  The plan was to start a course of Gemcitabine in early December but my wife has now learned that she is to undergo surgery to remove her gall bladder on 10 December.  Even with laparoscopic surgery she will be laid up for some weeks so the start of the chemo has been postponed until January.

The return of the cancer was not unexpected but is still very disappointing.  As I have already written, I am feeling very fit and well, in fact have never really had any symptoms so it is difficult to envisage what lies ahead.  I have been told that the end will come sooner rather than later but no one will/can put a timescale on it.  However, the medical reports have succeeded in getting me various financial Social Security benefits in advance of the usual waiting periods.  So the government department has been persuaded that my condition is terminal.  Now there is a Catch 22 definition if one was ever needed.  You can get the benefits early but you have to prove you are going to die soon!

A bit of a ramble but one final thought.  We often read about the poor state of the National Health Service in the UK  and how it compares with other countries.  I have had 2 liver and 1 coronary surgeries.  I have had and will continue to have a wide assortment of drugs and medications.  I have regular CT scans and have had a PET scan.  In all my visits and stays in hospitals and other health centres I have received, in my opinion, very professional, personal and friendly care.  The total cost to me is my transport costs (say

Re: Update from Ron Smith

Ron,

I sorry to hear that the tumors have shown up again -- but that seems to happen to most of us, and dealing with it is very stressful.  Keep positive, and don't loose your Scottish humour.

When my tumors seem to have gone away, only to reappear in a few months more or less, the doctors say also that they were probably there all along but too small to be seen on a scan.  Personally I would opt for treatment while they are small.  Even though your tumors may be slow growing, I think treating larger spots or more of them would be difficult.  The chemos/procedures, following liver resection, which worked for me were:  (Mostly clinical trials) Tarceva, Oxaliplatin with capecitabine , chryoablation, and, last Nov., SIRS Spheres (Y-90 beads) which still have the tumors stabilized.  Unfortunately some bad effects on the liver of six years of treatments are now showing liver damage.  I met with the oncologist today and he is setting up an appointment next week with a stomach specialist next week to see if the liver damage can be slowed down or reversed.

In general your comments on the U.S. vs U.K. medical plans agree with my impressions.  As I may have told you, our daughter lives in Windsor, UK, and has had similar experiences to yours, and I have had a terrible time with Medicare in the U.S., although my secondary insurance has been quite good -- but I think I just lucked out to get a good carrier.  Actually the carrier is in the state of Wisconsin, and there have been other advantages to Wisconsin medical benefits which other states don't provide.   Medicare representives, especially,  have been very unhelpful, and confusing.  At one point, one Medicare representative told me that colangiocarcinoma was not an approved illness for Medicare to cover.  (I felt it was illegal to have colangiocarcinoma in the U.S.!)

Best of luck on whatever you decide, and it was nice to hear from you again.

Regards,

Jerry Daniels

Re: Update from Ron Smith

Hi Jerry

Thanks for your words of encouragement.  We have discussed before the benefits of having a positive attitude; you bear that out and I do my best.  Sorry to hear about the liver damage and hope it doesn't prove to be too much of a problem.  It is good news about the SIRS Spheres (Y-90 beads).  I have had informal  type chats about this with my oncologist but, at present, he wants to try the gemcitabine first then look at trying other things if it is not successful.  He tells me he is on the Board of several clinical trials so this could be a route in the future.

I hope I have not upset people by drawing comparisons between the health systems in the UK and US.  It is so easy to slam the NHS in the UK, but in most cases it does provide free healthcare when it is needed.  It is not perfect and you will always be able to find cases where it has not performed well.  But at a time when you are probably under the greatest stress it is reassuring to know that you will receive the care without having to worry about the cost or fight with your insurer.

Humour is a bit thin on the ground in Scotland, just now,  following the recent defeat of the national football (soccer) team by Italy in the final European Championships group game.  The cry "we wuz robbed" could be heard on the mountains, through the glens and in most of the local hostelries up and down the nation, as an outrageously  incompetent decision by the referee, one minute from the end, resulted in Italy scoring the winner.  Worse, it allowed France, who we had already beaten home and away, to steal our place in the finals next year.  Another glorious defeat in the long history of glorious sporting defeats!  Never mind, The World Cup 2010 campaign will be starting shortly and the dream will be revived again.  I just hope we are all still going about then and I can regale you about a glorious victory.

All the best
Ron

Re: Update from Ron Smith

Hi Ron,
Just had to say - sorry the football team wuz robbed! I was in Edinburgh a few years ago at the same time as a big match, and I know how proud you are of your football teams in Scotland. You'll just have to whip them again next time.

As for your comparison of health care systems, that's been discussed a lot in the States lately, with ignorant politicians pulling statistics out of their butts to make it seem like Europe has a worse health care system (they want to find a reason to deny univeral coverage). Many wonderful commentators and journalists have come forward to point out that Europe, and the UK specifically, have a much better system in many ways: the infant mortality rate in the US is one of the highest in the developed world, for instance. I think there are pros and cons to both systems, but money gets you a lot more here, so if you're poor and you don't know how to work the system, you're in big trouble.  So no offense was taken by ME, anyway, due to your comments.

I'm very glad you've received such good care and I hope you continue to fight the battle and keep your Scots humor!
Joyce

Re: Update from Ron Smith

Hello Ron. So sorry to hear that things have gone pear-shaped for you all over again. I refer to the CC of course, not the footie!! smile
Just want you to know that down here in Sussex, I am thinking of you and wishing you well. Much love.

Re: Update from Ron Smith

Joyce and Kate

Many thanks for your kind thoughts.  With Margaret's surgery coming up and the delay in the start of my chemo we decided to have a holiday, so tomorrow we set off for two weeks in Florida.  Keeping our fingers crossed that the sun keeps shining, even though everyone in the South seems to be praying for rain.  Travel insurance was interesting.   We have had "free" annual worldwide policy through our bank for several years but had to advise them of my current medical condition.  I felt sorry for the chap on the other end of the 'phone when I told him about my cancer and my angina and that we were going to the USA.  I am sure I heard the Thump! as his jaw hit his desk.  The result was that they would not cover me for anything directly or indirectly related to my condition,  which did not leave much to cover.  I then went to a specialist insurer and, for me only, I obtained cover for the two weeks at a cost of

Re: Update from Ron Smith

Ron,
    I'm sorry to hear of your recent bad news.I  wish you the best of luck with the chemo and hope you enjoy your vacation. As far as our health care situation you are right. More than 15% are without insurance and probably half of those insured are under insured to the point that they still face bankruptcy if they become ill. They also do not receive adequate preventive care because they have to pay for it out of pocket and can't afford it. It is a HUGE problem that will become even worse before it gets better I am afraid.Our politicians really don't have a clue because they have never faced the possibility of losing everything you have worked your entire life for because you are unfortunate to have become seriously ill before you were eligible for Medicare.Any way I am a tree hugging liberal who NEVER watches Fox(FAUX) news and I believe we would be much better off with universal healthcare. It would not cost any more than what we are spending on healthcare now in this country because it would eliminate the obscene waste that is happening now.
   Sorry for the rant! This just happens to be one of my big issues along with the Iraq. I just hope people wake up!  Take care and best wishes!! Mary

Re: Update from Ron Smith

Yay, Marylloyd! I'm behind you all the way!

Yep, Ron, don't pay any mind to Faux News.
-Joyce

Re: Update from Ron Smith

i am so sorry Ron that things have taken such a turn. I had my surgery in the same department you  had yours (I remember Mr.  well) and have been wondering how you  were doing.

I have had experience with American, British, and Swedish medical systems and have
nothing bad to say about any. I feel blessed that I received my surgery in
Edinburgh under Professor Garden and I equally like my lead doctor in Sweden. I could have had chemo in Scotland, but decided to go to Sweden where I was denied it because of statistical (not financial) reasons. I think the special interests have really scared people into fearing socialised medicine instead of seeing it as it can be. Now, off my soap box!

I hope that things improve for you. Will you be going to Leeds often or will it be only records and tests being evaluated and treatment and exams actually being performed in Scotland? I am sure you will make the right decision for you regarding chemo.

I am completely missing my former life in Glasgow and the Glaswegian accent and humor. If you are getting your treatments at the Western Infirmary, hit Little Italy on Byers Road for the best and thickest Italian hot chocolate you can imagine then report back just to make me envious.

Take care, you are in my thoughts.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Update from Ron Smith

Hi Ron- my Dave was on Gemzar initially for his many liver tumors and it did shink them and he was off chemo for 5 months. they are now growing again and we are off to the Cancer Treatment Center of America to see what they have to offer.
Best to you on this go-round. You will be in our thoughts.
Patrice

Re: Update from Ron Smith

Just returned from a wonderful holiday in Florida.  The weather was gorgeous and the whole experience was very relaxing.  Just what the doctor ordered!  Left Florida on Friday with temps in the mid 80's; arrived in Edinburgh on Saturday afternoon and it was 40.  Just got in the front door of the house when a snow blizzard started.  It's all gone now but it sure is cold.  One thing about Scotland - if you don't like the weather in the morning just hang around as it will have changed by the afternoon.  Just ask any first time golfer on the links.

Kris, I remember learning that you had your surgery at Edinburgh Royal.  They have a great team.  I started under Mr Hidalgo but it was Mr Powell who performed the surgery and who has been seeing me since.  He is a really nice guy but so young looking.  (I keep looking for his school bag when I go into his office).  I won't actually be going to Leeds.  Mr Powell sent my notes and CD of my scans to Prof Lodge who has agreed with him that surgery would not be helpful and the best course is to start chemo.  I was given a copy of his letter and he said that while he thought he could remove the tumours it would not do any good, presumably because they will just keep coming back.  So I will be having chemo at the Beatson, but not at the Western as they are now in a brand new, state of the art, super-duper facilty at Garnavel.  The nearest place to there will be One Devonshire Gardens, but I don't think I could afford to buy a hot chocolate there!

Sorry to hear things have not been so good for you either.  Just keep plugging away and "langmayyerlumreek"

All the best
Ron

Re: Update from Ron Smith

No, One Devonshire Gardens is a little expensive. I hope you have a good experience at Garnavel. I spent time in 3 hospitals in Scotland during my first stint with cc. Western Infirmary, Edinburgh Royal and Garnavel. The Royal was the newest and nicest by far, but the nurses and doctors at Garnavel ROCK-Big time. To be frank-it was hard to go to the Royal after Garnavel because the staff was too wonderful there. I hope you have the same experience there as I did.

Your trip to Florida sounded great. I too went to the the southeastern States for a couple of weeks. I was hanging out in sleeveless shirts thinking how every "winter" should be like this, then returning to a cold, dark climate. Maybe we should just go back?

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope