A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: My Journey So Far

Postby InfoForMum » Mon Dec 16, 2013 9:02 pm

Fantastic news the good doctor has you on board Mark. Really pleased. As a surprising co-incidence my Mum's nanoknife procedure has been rescheduled and is now due to go ahead the same day as yours. Perhaps we will bump into each other while there. Will certainly be happy to share notes as to plans and outcomes if you so wish.

It's good to hear you have a supportive team. If you visit my thread mentionning nanoknife you will see the battle had with her consultants.

In case we don't cross paths have a fabulous Christmas and good luck with everything following.

Sarah

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

Re: My Journey So Far

Postby MSH » Tue Dec 17, 2013 9:57 am

Thanks Sarah, our paths may indeed cross, XXX isn't that big. The good professor told me he had done 26 procedures on the pancreas, and that he had 2 booked for the 8th January but could do 3(not necessarily all pancreatic). At that rate he'll have done many more than 26 by the end of 2014.

Mark

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: My Journey So Far

Postby cestrian » Fri Dec 20, 2013 9:17 am

Hi All

A productive and positive meeting with my specialist on Wednesday.

Whilst he. and his colleagues do not really endorse nano-knife because it is relatively new and in their eyes unproven there was certainly no animosity towards it. I got the impression that their reluctance was enhanced by the treatment only being available privately, not wishing to be seen to encourage patients to spend large amounts of money on treatment that may or may not help. Anyway it's down to me apparently and they are perfectly happy to provide any scan results, reports or whatever is needed.

I am minded to take things gently ( not one of Steve's stormtroops). We are awaiting results of my Braca genetic tests which may open up another line of attack and, of course, at present I am feeling very well, still gaining weight and apart from the little rogue lesion in my lung all the other growths including the main bugger in my pancreas are all stabilised. I do intend to contact Prof soon after Christmas to see how he feels about the fact that the Cancer has spread to lung and liver and if this will prevent treatment.

In my terms I am on month two of my "second life" and I and my family are grateful for every single day we have together but are all determined to do everything reasonably possible to keep going. In the meantime I am just continuing on the Gemcitabine chemo at the excellent xxxx Cancer Centre where nothing is ever too much trouble for any of the nursing staff. Although I'm no longer on the clinical trial I am still monitored as I'm apparently part of the statistical data!! It does mean that the trial nursing team see me quite regularly as well as the ward staff who now actually administer my chemo.

Good luck to Mark and to Sarah's Mum - we'll all be cheering for you on 8 January!!

Love and Peace

Mike

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

Re: My Journey So Far

Postby J_T » Fri Dec 20, 2013 10:51 am

Great stuff Mike, positive as ever and all sounds good.

Keep the faith!

Good luck to Mark and Sarah's mum in January.

xxx

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: My Journey So Far

Postby InfoForMum » Fri Dec 20, 2013 9:19 pm

Thanks J and having just unwittingly posted something obscene on a new users thread, a fact Mark helpfully pointed out, I'm wondering if he did make it as far as the real dictionary definition, but called the urban dictionary one out for chucks (oh for a raised eyebrows, pursed lips and hands on hips emoticon). Either way made me laugh once I'd got over the absolute mortification and shock. My whole family take the rip roaring mickey whenever possible, so if it was a wind up watch out Mark I've had practice and will get my revenge!

On a more serious note, hope you're continuing to do well and feel well and are looking forward to Christmas.

Sarah
XXX

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

Re: My Journey So Far

Postby J_T » Fri Dec 20, 2013 10:55 pm

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

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

Re: My Journey So Far

Postby MSH » Sat Dec 21, 2013 12:32 am

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

Re: My Journey So Far

Postby Slewis7313 » Sat Dec 21, 2013 10:44 am

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

Merr Xmas

Steve
X

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

Re: My Journey So Far

Postby MSH » Wed Feb 12, 2014 3:33 pm

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
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: My Journey So Far

Postby Didge » Wed Feb 12, 2014 3:53 pm

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

Re: My Journey So Far

Postby J_T » Wed Feb 12, 2014 4:19 pm

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
Posts: 1085
Joined: Mon Jun 14, 2010 1:30 pm

Re: My Journey So Far

Postby PCUK Nurse Jeni » Wed Feb 12, 2014 4:51 pm

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

Re: My Journey So Far

Postby Cathy » Wed Feb 12, 2014 5:33 pm

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
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: My Journey So Far

Postby nikkis » Wed Feb 12, 2014 6:35 pm

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
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: My Journey So Far

Postby Bee » Wed Feb 12, 2014 10:20 pm

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

Bee x