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MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: My Journey So Far

Postby MSH » Tue Apr 15, 2014 1:08 pm

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?_o ... xcerpt.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
Posts: 284
Joined: Tue Aug 14, 2012 3:29 pm

Re: My Journey So Far

Postby PCUK Nurse Dianne » Tue Apr 15, 2014 1:25 pm

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
Posts: 1038
Joined: Thu Oct 31, 2013 5:38 pm

Re: My Journey So Far

Postby sandraW » Tue Apr 15, 2014 1:57 pm

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
Posts: 50
Joined: Thu Dec 13, 2012 9:19 pm

Re: My Journey So Far

Postby Carole McGregor » Tue Apr 15, 2014 5:50 pm

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
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: My Journey So Far

Postby Slewis7313 » Tue Apr 15, 2014 6:29 pm

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
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: My Journey So Far

Postby J_T » Tue Apr 15, 2014 8:01 pm

Fabulous Mark, confess to a little tear.

Well done you!

Julia x

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: My Journey So Far

Postby EmmaR » Tue Apr 15, 2014 10:57 pm

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

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: My Journey So Far

Postby belgrade » Wed Apr 16, 2014 12:07 am

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

Hilary

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: My Journey So Far

Postby Cathy » Wed Apr 16, 2014 11:10 pm

Aw, a lovely positive story.

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

Cathy xxx

LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: My Journey So Far

Postby LMD » Wed May 07, 2014 1:43 pm

Happy (belated) 60th Birthday Mark!
Thank you for sharing your experiences. Very inspirational, it must be said.

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: My Journey So Far

Postby MSH » Sat May 17, 2014 7:21 pm

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.

Fifi

Re: My Journey So Far

Postby Fifi » Sat May 17, 2014 7:42 pm

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
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: My Journey So Far

Postby EmmaR » Sat May 17, 2014 10:23 pm

Long my your journey continue and hope it goes far because your granddaughter needs you .
Best Wishes
EmmaR x

sandraW
Posts: 1038
Joined: Thu Oct 31, 2013 5:38 pm

Re: My Journey So Far

Postby sandraW » Sun May 18, 2014 12:30 am

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
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: My Journey So Far

Postby Slewis7313 » Sun May 18, 2014 2:59 am

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
X