Topic: Update from Ron Smith

Hello everyone.  I have been fairly quiet over the last few months but now have a new situation to report.  I was persuaded by doctors at the oncology centre that it may not be in my best interests to start chemo at the start of the year as I was not showing any symptoms and it could actually prove to be detrimental.  My last CT scan, in April, indicated that the tumours had become larger and for the first time, I was told there may be "something" on my lung.  Apart from that, however, I was still symptom free, with nothing unusual coming back with my blood tests.

Over the summer I have noticed  changes, ending with my GP confirming that a small lump I could feel in my neck being an enlarged lymph node.  I had also found I was starting to feel a bit bloated and seedy if I ate too much or sat about too long.  The worst time was at the beginning of this week when, in a rare time of weakness, I had a fish supper.  (Kris, if you are reading this you will know what a Scottish fish supper is like - delicious but a killer, especially when served with lashings of salt, vinegar and sauce!).  It took me more than a day to get over it.  What has made things worse is that the summer in Britain, particularly in Scotland, has been dreadful, making it very difficult to get out for walks or spend time in the garden.  So I am definately not as fit as I was earlier in the year.

Anyway, I have now decided to start chemo and on Tuesday next I am due to have my first treatment.  I will be having Gemcitabine on its own, 7 weeks on and 1 week off.  I am a bit nervous about it since my trial with Xeloda only lasted 3 days and brought on my angina.  I have been told Gemcitabine is different and should not have the same outcome.  But I am worried that it will lay me low and will be the start of a quick deterioration.  But there appears to be no obvious alternatives.  Radiation, RFA, cyberknife, theraspheres, or anything of that ilk has been ruled out as unsuitable due to the number and positions of my tumours.  I am told that if the Gemcitabine does not work I will have access to clinical trials.  Well, I'll just have to wait and see how it all pans out.

Ron

Re: Update from Ron Smith

Ron,
It is so good to hear from you...yes I remember those Scottish fish suppers (I always ask for more vinegar and sauce please). I have been hearing my friends complain about the weather there and not being able to get out. I have had the same problems here in Sweden as we get our weather from you.

So, they are starting you on chemo soon. Will you be going to the Beatson or will they be treating you in Dundee (that is right isnt it?). Is your head doctor in Leeds or is it based still at Edinburgh Royal? I have been thinking about you and have been worried since I havent heard from you. I somehow feel linked to Sue because our cases and timeline are so similar and to you because we were treated by the same doctors and that you live where part of my heart does.

I will think the best thoughts and send prayers your way and hope the chemo kicks some bum.
Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Update from Ron Smith

Dear Ron,
Here's hoping the new course of action does you some good and zaps some of those nasty tumors. Let us know how you're feeling - we're all pulling for you!
Joyce M

Re: Update from Ron Smith

Dear Kris and Joyce

Many thanks for your good wishes.

Kris, I will start the chemo on Tuesday and it is all done at the Beatson.  That is now the main cancer centre in Scotland.  Not sure what your reference to Dundee means; my local hospitals would be Falkirk or Stirling.  But it is only the Beatson that gives gemcitabine.  I stopped attending Edinburgh a year ago when it was decided that the only course available would be palliative chemo.  I have an open invitation to contact Mr Powell if I wish to chat but, really, there is no real point.  Everything is done at the Beatson or neighbouring Gartnavel.

I have often been told I need my head examined but, to date, I have resisted the pressure to get a head doctor.  Seriously though, the link with Leeds never happened since Professor Lodge felt he could do nothing for me.


One question Kris - were you a brown or a red girl?

Ron

Re: Update from Ron Smith

Ron, I dont know where I got it but I thought you lived in Dundee. My mind must be playing tricks on me. Of course Stirling is one of your nearest towns as my friend and I decided that in Scotland, all roads lead to Stirling (no really, when you travel you will always see signs to stirling).

Right now, it is at the tale end of summer so I am blond with red highlights, but once the trees turn color, so will my hair to a robust auburn red.

I know Gartnavel well, it was where they were going to remove the horrible gallstones that were causing my jaundice (if only). TBH, although it was the oldest and most run down, it was the cleanest hospital with the most caring staff out of all the hospitals I have been to. I hope the chemo works and that it causes no angina!

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Update from Ron Smith

Kris

You are losing the plot.   I meant the sauce on your fish supper!

Re: Update from Ron Smith

Ron,
I thought you were teasing me like Peter and Jeff used to about my hair color!!!!! I promise I havent been taking anything illegal or legal!

I was always a brown sauce girl! Still am...there is an Irish pub in our town that brings brown sauce with your hamburger and I might go overboard on the sauce just for nostalgia sake.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Update from Ron Smith

Hi Ron and Kris,
Kris, Are you a natural red head?  I don't remember if we ever found out the truth?  My wife is from England and loves her brown sauce.  I still prefer ketchup on every thing.  I was in Scotland once when stationed at RAF Lakenheath.  One of our F-111's blew an engine and I have to take one up to a RAF Station somewhere near the Lock Ness Monster lake. Gosh I can't remember the name, but they put us up and gave us beans and bangers with brown sauce.  Ron have you ever seen the Lock Ness Monster?  I'm bored today .  Just wanted to post something.
Cheerio for Now,
Jeff

Take it to the Limit,One More Time! (Eagles)

9 (edited by Ron Smith Sat, 20 Sep 2008 18:08:32)

Re: Update from Ron Smith

It's uncanny Kris, there's something else we have in common.  But you surprise me as I thought weegies' sauce of choice was tomato.  Must be a case of nurture rather than nature.

Jeff
To be truthful, I think most of the sightings are made after close contact with "uisge-beatha"!  Since I no longer follow that course I am unlikely to catch sight of Nessie.   By the way, it is a dead give-away to all that you are a tourist if you call Loch Ness a Lock or a Lake.  The c and h are softly sounded together from the back of the throat and not given a hard sound as in lock.

I don't know which RAF base it would be but, remember, Scotland is a small country so everywhere is close to Loch Ness or anywhere else.  This link should give you a  list of bases in Scotland, so, if you are really bored, you might be able to find the right one.

http://en.wikipedia.org/wiki/List_of_RA … current.29

Had they given you haggis and neeps then you would really have had a story to tell.

Ron

10 (edited by JeffG Sat, 20 Sep 2008 18:46:15)

Re: Update from Ron Smith

Hey ! Thanks Ron,  Brings back many memories.  RAF Prestwick was the one.
RAF Bentwaters in Suffolk is where I first got stationed.  It is where I got married as well.  Had my Reception at RAF Woodbridge.  Bentwaters now a museum wow! That tells my age.   So don't keep me hanging --- What is haggis and neeps? or should I look it up? Ha!
Thanks Ron for the ride through memory lane,
Jeff
P.S. Pig Intestines uch!  My wife just told me.

Take it to the Limit,One More Time! (Eagles)

Re: Update from Ron Smith

Jeff
Don't knock it till you try it.  It's a pity with you being stationed at RAF bases that you never managed to attend a Burns Supper, then you would know how good it can taste, especially when washed down with a dram.  I am impressed that you knew what "uisge-beatha" means.  You're ovbiously not a lost cause! LOL!!!

Re: Update from Ron Smith

Cheers mate ! One scotch to ya !
Jeff

Take it to the Limit,One More Time! (Eagles)

Re: Update from Ron Smith

Jeff
I don't want to bore you but I was looking at the Prestwick site and thought this reference to the Royal Navy Air Station quite interesting.  Would this have been the one you visited?  I see they had at least one quite well known visitor.

"Prestwick is also home to a Royal Navy Air Station, more popularly known as HMS Gannet, where Sea King search and rescue helicopters are stationed. Although the US Air Force no longer has a base at the airport, Prestwick continues to handle a large number of US military flights. It was at this airport that Elvis Presley set foot in the UK for the only time, when his US Army transport aircraft stopped for refuelling en route from Germany in 1960.".

14 (edited by pauline Sun, 21 Sep 2008 14:54:27)

Re: Update from Ron Smith

Ron,
     I hope your gemcitabine treatment goes well. My husband, Anthony, had it combined with cisplatin and he tolerated it all pretty well - for 6 months in all. You mentioned that a trial might be the next step. I don't know how you would feel about travelling to London for treatment, or, indeed if this trial is also under way in Scotland, but there is a promising trial of a drug called BIBW 2992 at Guy's Hospital led by Dr Spicer. My husband, Anthony, was offered it but, unfortunately his disease progressed too far before he was able to start it. Just something for you to be aware of and to maybe ask about.
        Good luck with the chemo,
                   Pauline

Re: Update from Ron Smith

Ron , Yep thats the one.  The U.S. Was conducting low level radar training and blew out an engine and had to make emergency landing their.  If I remember right, we had one F-111 swing wing fighter jet fly right in to the side of one of your mountains.  Can't remember, I think in the 80'S.
Later,
Jeff

Take it to the Limit,One More Time! (Eagles)

Re: Update from Ron Smith

Jeff
This site gives details of a number of F111, by reference to their tail numbers.  A bit strange but probably interesting if you recognise any of them.
http://www.f-111.net/t_no_F.htm

Pauline
Thanks for your good wishes.  If this chemo doesn't work and there is nothing else available, then Professor Evans has indicated that he will get me into new trials.  I believe he is on the Boards of various trials so he should be well placed.  But I will keep a note of BIBW 2992.

Thanks again
Ron

Re: Update from Ron Smith

Ron....you have a neighbor from Scotland.  How are you feeling?

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update from Ron Smith

Hi Ron,
How is your treatment with Gemcitabine going? My husband Ray bad two month's treatment of this at Leeds and the only side effect he had was that two days after the treatment he felt vey tired and this lasted about 48hrs. No hair loss or nausea, but it did hit his platelets badly and he had to stop treatment. But for the first time in two years the 3 monthly scan showed no growth of his tumours, so it is a pity he had to stop short of the full treatment.
Hope this works for you.
Sue.

19 (edited by JeffG Mon, 06 Oct 2008 09:52:26)

Re: Update from Ron Smith

Ron ----Wow the F-111 site was remarkable.  I actually was in involved with the recovery operations on the RAF Lakenheath ones.  I transported the pilot and navigator to debrief in 83 crash in the North Sea.  I attended the memorial service of the wives, of the one that crashed in the cullin mountains of  Scotland.  It was so sad, One of the pilots wife was 8 months pregnant with their first child.  Thanks for the site link. I better stay on subject now. but will certainly e-mail you direct if I remember any more.
Bless Ya!
Jeff

Take it to the Limit,One More Time! (Eagles)

Re: Update from Ron Smith

Hi Sue

I will be having my third treatment tomorrow.  It hasn't been too bad but I find that Wednesday I feel really rotten all day.  It's a bit like having the flu at the same time as having a really bad hangover (with none of the enjoyment!).  Thursday, I'm feeling a bit better and am pretty well back to normal by Saturday.  Just in time for blood tests on Monday and the next round of chemo on Tuesday.

I will be having a CT scan on Wednesday but this is the first since April.  So this one, although it is well into the treatment, will be the base line.

Re: Update from Ron Smith

Ok, Ron, Good luck, fingers crossed for you! Let me know how you go on.

Re: Update from Ron Smith

Ron,
Thinking good thoughts for you. Hope that ct shows everything and more we want...no growth, shrinkage and all sorts of good things.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope