My Journey So Far

[J_T]

Well it made me laugh! I have been advised to avoid Urban Dictionary like the plague! lol

[MSH]

Hi Sarah, my first port of call was my usual dictionary .com where I drew a blank hence google. it doesn't appears in my shorter OED (now rather aged) but I see the on-line version has:

Definition of wibble in English

Pronunciation: /ˈwɪb(ə)l/

verb

[no object] British informal

1wobble; quiver.

2speak or write, especially at great length.

Feeling really well at the moment and looking to the New Year with a bit more belief.

My best wishes to you and your family.

Mark

[Slewis7313]

The things we learn on the PCUK forum!!!!

Merr Xmas

Steve

X

[MSH]

February the 12th is a very significant date for me. We by which I mean my wife, son and I were returning from a trip to Niagara Falls when I caught sight of my yellowish tinge in a washroom's mirror. It wasn't definitely pancreatic cancer at that stage but it seemed to me the likliest diagnosis. So here we are one year on, and what a year it has been. I well remember my first meeting with my oncologist. I was under the impression that I had Cholangiocarcinoma which is even less amenable to treatment than PC. I had my funeral planned and thought my prognosis was a matter of weeks. To my eternal gratitude she had reviewed my file and decided that it was more likely to be pancreatic and suggested Folfirinox. I was told I had a one third chance of responding, giving me just short of a year. There is a sense now that I'm on borrowed time.

Be that as it may I have to be thankful for my current state of health. I really have no symptoms I can attribute to my cancer. It is 5 weeks today since I had the Nanoknife, and I still get a little abdominal discomfort, and I have little feeling in the tips of my fingers and toes following the chemotherapy. When I look at my fingernails there is a series of transverse ridges which correspond to the courses of Folfirinox, though two thirds of the nail is now normal. For many weeks the ends of my fingers were a bit wrinkly as if they'd been too long in water, but recently this too has improved. I am fortunate in that my energy levels and appetite have always been good, (though I did lose a bit of weight when I was jaundiced).

I had a very enjoyable week skiing on the French Italian border. I had got clearance from the professor, though as I said to my wife on one of the chair lifts, I don't suppose anyone's been skiing after the Nanoknife before. I did have a little bit of tummy trouble whilst I was away. After the first few months of diagnosis I had had a bit more trouble with wind. This is now pretty much back to normal though was again a problem whilst I was away. I would be fine on a morning but as the days progressed my tummy could be quite painful. I didn't know if it was a change of diet, the chalet hosts take some pride in their meals, more beer with the apres-ski, but I suspect the main culprit was just the altitude. Certainly things were back to normal on my return.

My oncologist had sought an opinion from a colleague in London about my bony metastases. To this end I have now had an MRI scan and am awaiting a plan of treatment. I had thought I was getting some pain from the area which had shown uptake on the PET scan, and was getting a bit anxious about this. But on reviewing the scans I found I had mixed up left and right. It just shows the power of the mind. Anyway whilst waiting on this plan we are having a short break next week in Southern California. A little bit of sunshine and a bit of hiking in the Joshua Tree National Park should do wonders.

My best wishes to all.

Mark.

[Didge]

I hope you have a wonderful break and glad to hear you are doing so well one year on from diagnosis. We won't be able to afford Nanoknife if it comes to it, so any successes must surely put pressure on the NHS to approve it!

[J_T]

This is absolutely wonderful news Mark and I'm so pleased for you and your family as you continue to enjoy life together.

I always followed your story because you were pretty much similar to Ray and started treatment not far apart. I remember wondering if we should have pushed to continue on Folfirinox when Ray was diagnosed with bony mets, as your oncologist had done with you, but I suppose if the guy says 'no' there's not a lot you can do about it. Also I think you were always more physically fit than Ray who once he got jaundiced never recovered any real strength or stamina. Just shows how differently people react to this disease.

I wish you continued good health and further successful treatments. Enjoy the sunshine!

Julia x

[PCUK Nurse Jeni]

Lovely update Mark. What a legend you are with skiing and now the trip to California! Wow!

It is great that you are still well, and managing to get some wonderful, quality time with your family.

I wish you a safe and enjoyable trip, not to mention a relaxing one with some sunshine (what is this?!)

Have a great time,

Kind regards,

Jeni.

[Cathy]

Hi Mark,

I understand your feeling like living on borrowed time.. As we got to a year from diagnosis I felt the same way BUT you sound like you are doing fantastically so I wouldn't think of it as borrowed time but YOUR time and it sounds as if you are making the most of it too!

Good on ya. Have a wonderful holiday

Cathy xxx

[nikkis]

Mark, you are such an inspiration to us. Have a lovely holiday. As I am writing I am trying to imagine the sun on my face, but it's hard. Just make sure and bring it back with you!

Nikki

[Bee]

Hi,

Glad to hear things are going well, have a wonderful holiday!

Bee x

[MSH]

April 15th 2014, another significant date which at one time I never thought to see, my 60th birthday. I have to say I am feeling as well as I ever have. The mild abdominal discomfort which persisted for about 3 months after the nanoknife is finally away, and whilst not back to my previous level of fitness, I've got to remember I'm a bit older. I'm in the gym several times a week and able to walk for miles in my beloved Cheviots. I have told those that matter where I want my ashes scattered, though as my daughter quipped on a particularly windblown walk they'd need to be careful or I would end up in Scotland.

We had a lovely holiday in California after rather an eventful start. Suffice to say I'll never fly US Airways again. We eventually reached Los Angeles and as we were driving to our holiday home noticed a large advertising sign for of all things the Cyberknife. We had several good desert walks limited a little by our water supply. They recommend a quart of water per person per hour. Well my wife had only a small rucksack and our flask carried about a pint. Technically we should have had a gallon and a half. I don't like to think what she would have been like carrying that, she was bad enough as it was with her complaining regularly about how she should be in the mall. It wasn't all toil, there was plenty of just sitting around in the sunshine watching the roadrunners and humming birds, we both want to go back next year.

I was slightly limited in one respect. I wasn't able to accompany Diane when she went swimming. Almost a year ago I had a Groshong line inserted for the chemo. This was fed into the vein under my right collar bone and exited from the centre of my chest. I had left it just in case I needed further chemo, though finally decided to have it removed if my recent scans were OK. In the event my hand was forced. I miscalculated badly and had too much alcohol on an empty stomach. I don't know if you have lacunae in your life where you have no memory of events, I don't recommend it. I woke the next morning with a couple of bruises and the final few inches of the Groshong line lying loose in the bed. It forced my hand and it was removed the next day. I can't say I'm sorry, I had never got used to seeing a tube come out of the centre of my chest.

On to the scans. In my last update I mentioned I was awaiting the results of an MRI scan. This confirmed a secondary deposit in one of the bones in my spine, as shown on the PET scan. The only way of treating this is with radiotherapy and the problem with conventional radiotherapy is that an effective therapeutic dose is likely to damage the spinal cord. Treatment with the Cyberknife gets round this by focussing the radiation more finely. I have found one paper on the internet detailing the problem and anyone wanting further information should visit,

http://www.sciencedirect.com/science?_ob=PdfExcerptURL&_imagekey=1-s2.0-S1042368004000385-main.pdf&_piikey=S1042368004000385&_cdi=273342&_user=12975512&_acct=C000228598&_version=1&_userid=12975512&md5=902ec96f9b57c86e2631fe346f85e72d&ie=/excerpt.pdf

Note that this paper is 10 years old. The wheels of scientific advance turn very slowly sometimes. Talking of slowness, my private oncologist, one of this country's leading cancer doctors working from arguably its leading cancer hospital finally decided that yes it did look suitable for treatment with the Cyberknife, great I e-mailed back, when can we start? I should say that I am fortunate in being able to self fund which in theory should save time. Well Monday morning comes and her secretary phones to say we need an up to date PET scan. I was livid, I was referred to her just after the November PET scan and if it was out of date it was because she had dragged her feet so much. Anyway back to the drawing board and after speaking to the radiographer involved with the Cyberknife at another centre he recommended an oncologist with whom he works. Interestingly I had come across this man in initial fact finding about the Cyberknife and had him in mind as a possible contact before the previous fiasco. Anyway once the scans had reached him he agreed yes I appeared suitable but would need an up to date PET scan. This had grown to include an MRI scan by the time he wrote his letter.

I have now had the PET scan and informally have been told it shows no disease progression, I have an MRI scheduled for tomorrow. I have hassled my liaison nurse, who I have to say has been brilliant in order to get the scans to London and now find my man is out the country until the 25th April. So much for getting treated before Easter as I had hoped. In a way I am pleased to have changed my private oncologists. This man seems so much more proactive. He did say that many oncologists are nihilistic when dealing with pancreatic cancer. That he wasn't like that for which he was sometimes criticised but that he had had some very good results. Oddly enough nihilistic was the word that persisted in my mind after learning of the MDT meetings decision back in early December. Basically wait until the symptoms come back and then try Gemcitabine. It is probably unfair, but sometimes the attitude seems to be well it's pancreatic cancer, it's not worth doing very much.

Still I must count my blessings. I am in a position to afford cutting edge treatments which would be unavailable to me on the NHS. I have no pain which surprises me a little as the spinal metastasis has been there for many months. My fitness is coming back nicely, my main form of exercise in the gym is the rowing machine, and Concept 2 have a website where you can compare times with 46,000 others. I had been steadily improving and should notice a big jump from today when I go up an age category. In fact it is sometimes easy to forget that I have cancer. I must guard against such thoughts as I know it hasn't gone away. Still when I look back to the dark days of a year ago when I thought I only had a few short weeks to live. A year ago to this very day I had had a good walk with my daughter in the upper Coquet valley. I was getting pain from the tumour at that time, but less so when walking. Well I paid for any earlier easement by a particularly nasty episode later that evening. Now I haven't had a pain killer for almost a year, barring the evening after the Nanoknife.

There is always hope.

Mark

[PCUK Nurse Dianne]

Hi Mark,

What an amazing post, very inciteful, and so full of hope and inspiration. Sounds like you had an amazing holiday, and I loved the fact that you have shared your 'challenging moments' with us too. Happy birthday to you, please enjoy this great celebration that is yours and continue with such great work.

Enjoy your day, may there be many more to follow, and we look forward to hearing the update on your next treatment.

Dianne & Jeni

Support Team

[sandraW]

Happy Birthday Mark,

So great to hear your good news,really pleased to hear some, its so important to hear the good news, and that Nanoknife worked well for you, and that you had such a good holiday.

My husband is on the last of 12 chemo's 6 x 5FU followed by 6 Folflorinox? after surgery to remove 2/3rds of his pancreas last September. Half way through his chemo his tumour markers rose, so they added the combination drugs for the last 6 sessions, as a scan showed he had 2 tiny lesions in his liver. He is having a scan on 1st May but we can't see the oncologist until the 19th May for the results due to the 2 bank holidays and Monday is our treatment day, so for us its fingers crossed time. My husband is remarkably well apart from being exhausted from the treatment, wish he was as fit as you lol. take care and keep up the good news sandrax

[Carole McGregor]

This is so inspiring Mark and will give hope to many people. My husband Clive died last October, just a few weeks before his 60th birthday so I understand what a landmark this must be for you. Funnily enough we are off to California in the summer (though with BA fortunately !). Had originally intended to do a Mediterranean villa holiday, our usual thing, but decided that it would be just too hard without Clive. So it's a grand tour of California and a chance for me and the kids to create some new memories together. Not cheap, but I know without a shadow of a doubt, that it is what Clive would want me to do.

Have a wonderful day and thank you for sharing your experience.

Regards

Carole

[Slewis7313]

Thanks for the detailed update Mark. It is great to see you are doing so well and that you remain active. I have 2 months until the big 60, which is fantastic as not so long ago I thought I would not even see my 59th! I am doing the 'sit back and wait' thing for now, but regularly reviewing with my Oncologist and have been given the go ahead for either Nanoknife or Cyberknife if things start flaring up again. I am lucky that mine (as far as we can tell) remains locally advanced. I do need to take your lead and start being more active, though a daily walk with the dog down the hill to the beach is quite a challenge.

Take care and good luck with the treatment.

Steve

[J_T]

Fabulous Mark, confess to a little tear.

Well done you!

Julia x

[EmmaR]

Happy Birthday Mark and long may your Journey So Far continue into the future .

Emma.

[belgrade]

"Penblwydd Hapus" Mark and may you have many more birthdays to celebrate.

Hilary

[Cathy]

Aw, a lovely positive story.

Happy birthday Mark. Onwards and upwards for your 70th!

Cathy xxx

[LMD]

Happy (belated) 60th Birthday Mark!

Thank you for sharing your experiences. Very inspirational, it must be said.

[MSH]

Another post another red letter day. I have just returned from visiting my lovely grand-daughter. She's a bit battered and bruised as she didn't make it easy for her mum but beautiful all the same. I just have to stay around for a while to watch her grow up now.

On that side of things I had some very good news. I mentioned previously that I believed the PET scan showed no progression. Well when I picked up the MRI scan to take down to London, the hospital very helpfully had put both PET scans on a disc, and enclosed the reports. The latest PET scan showed no activity above or below the diaphragm. This is strange because it's over six months since I finished chemo, but something has reduced the activity in the vertebrae. My private oncologist agreed that there was no point in treating what wasn't active, and even went so far as to question the diagnosis this not acting like pancreatic cancer usually does.

Sadly I had to say that although the biopsies were indeterminate the pain I started getting last year eventually convinced me that this was malignant. Additionally my CA19-9 has increased to 230. Be that as it may, it appears that I have a low grade tumour which doesn't seem to be causing any obvious adverse effects. I am back playing my old raquetball opponent and the games are as competitive as ever, and last week as part of a Concept 2 challenge, I rowed a marathon, 42,195 meters.

There really aren't any rules for this situation as far as monitoring goes. I have had more than enough radiation in the last few months, and aren't anxious to receive any more. I will keep an eye on my blood, but am wary of ascribing too much importance to the biomarker. As long as I feel well I'm just going to get on with the rest of my life, for as long as I can.

I can only hope that those currently being treated have as good a response.

Mark.

[Guest]

You seem to be doing very well Mark. You seem strong, and appear to be fighting this, and winning. Having your grand daughter will you give you extra purpose and meaning to continue to fight.

x

[EmmaR]

Long my your journey continue and hope it goes far because your granddaughter needs you .

Best Wishes

EmmaR x

[sandraW]

Hi Mark, that's really great news, I hope you continue to feel well, and so fit! Congratulations on that gorgeous granddaughter, take care sandrax

[Slewis7313]

Excellent news all round Mark, particularly the Granddaughter. As you say, this is a strange old illnesss which seems almost arbritary inthe way it decides to affect individuals. You are obviously still able lo lead a really full life and put the little Gremlin in a corner out of your way for now.

Long may it continue!

Steve

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