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

Moderator: volmod

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: My Journey So Far

Postby Sueoliver » Sat Nov 14, 2015 8:53 am

Hi Mark,
I love reading your posts you are inspirational! I am happy you had such a good trip and I hope you have many more. I hope your stent is sorted soon and is uncomplicated.
Very best wishes to you,
Love Sue x

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: My Journey So Far

Postby sandraW » Mon Nov 16, 2015 1:22 pm

Hi Mark,
Thanks for letting us know how you are doing, what a wonderful achievement your holiday was, glad you managed that central line, sound scary, and good in one way you are now rid of it.
Hopefully the Abraxane will do the job for you now, and get those pesky CA19's back down, and that you get the stent issue sorted soon.
Lets hope we don't hear from you until the next 3 monthly update, take care love sandrax

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

Re: My Journey So Far

Postby Didge » Mon Nov 16, 2015 9:44 pm

Good luck with the new treatment Mark and hats off to you for completing such a tough adventure! Didge x

PCUK Nurse Jeni
Posts: 1078
Joined: Mon Jun 14, 2010 1:30 pm

Re: My Journey So Far

Postby PCUK Nurse Jeni » Tue Nov 17, 2015 3:42 pm

Thanks as ever for the great update Mark, interspersed with your usual good humour - I giggled when you mentioned about finding the alcohol!

Sorry to hear that Folfirinox is not now working but Gemcitabine is a good drug, and was our only drug up until a few years ago, per say. Well, the main drug anyhow - pre-folfirinox days.

Hopefully, you will respond as favourably to this as you did to Folfirinox.

Kind regards,

Jeni.

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: My Journey So Far

Postby Ruthus » Wed Jan 13, 2016 4:13 pm

I have read your story and have found it incredibly inspirational that you are now in your 4th year living what appears to be a reasonable quality of life with inoperable PC. Is there anything specific with regards to treatment or your lifestyle/fitness which you believe has enabled this? How is your current state of health on the new chemo regime? Best Wishes for the New Year.

Ruth

Ant11
Posts: 125
Joined: Sun Dec 01, 2013 8:43 pm

Re: My Journey So Far

Postby Ant11 » Wed Jan 20, 2016 8:53 am

Hi Mark, Just checking in to see how the new regime is going. Tough journey this PC but hope you are keeping that wonderful fighting spirit. x

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

Re: My Journey So Far

Postby MSH » Thu Feb 04, 2016 3:55 pm

I was brought up on a small farm and one of my abiding memories is the sheer bliss of merely being able to stand up after a period of back-breaking work. The lesson I took from this is that all things are relative. This was brought to mind last night because there are parallels with my current state. After some months of varying difficulties I feel pretty normal, and it's great. I'm not quite normal, I still have a little neuropathy though this is hardly troublesome and does seem to be improving. Also I am anaemic though this is only apparent if I exert myself and again seems to be getting better. The main problem of late has been an uncomfortable abdominal bloating and this has eased considerably after starting activated charcoal. I had decided to go skiing and if that goes ok we'll book the plane for California again in April. When I booked the place last May I never really thought we'd get back but I feel pretty confident now. It will be my 4th year of skiing post diagnosis, which must be some kind of record at least for someone who is and was inoperable.

My current treatment is Gemcitabine alone, which is a breeze after the Folfirinox. It's run through in 30 minutes and I'm able to have it at my local hospital which makes things much easier. I had hoped to use it combined with Capecitabine but my oncologists were reluctant to use this arguing that it was too closely related to the 5FU in Folfirinox. The good news is that I appear to be responding, my CA19-9 is down from 2200+ to 1357 and my bone marrow is managing to function tolerably well. It is now over 2 years since I had the Nano-knife. I have written before about being told that whilst it wasn't a cure it might give me 2 years. I e-mailed Professor to appraise him of my progress and to ask whether or not the procedure could be repeated. He affirmed that this was possible and asked to see my scan results. I don't think the last one was too bad, but will forward the forthcoming CT scan later this month. I also learned that there is a possibility that a tumour previously resistent to chemotherapy can become responsive again after a washout period. This might be grasping at straws but is better than nothing.

I am sorry not to get back to you earlier Ruth, I have been pondering on your question. When I saw my oncologist last May after returning from a protracted trip to North America I had asked her to keep me alive so I could return this year. When I saw her recently I thanked her for doing just that. She was kind enough to say that it had more to do with me than her. I am sure that a positive attitude and a good level of fitness helps though I doubt I am exceptional with regard to these. I am an atheist though wouldn't discount the value of a Buddhist friend who chants for me, nor that of a Catholic who lights candles. In truth I just seem to have been very fortunate in responding well to all the treatment regimes I've had. Long may it continue.

My best wishes to all.

Mark

PCUK Nurse Jeni
Posts: 1078
Joined: Mon Jun 14, 2010 1:30 pm

Re: My Journey So Far

Postby PCUK Nurse Jeni » Thu Feb 04, 2016 4:04 pm

Mark,

Unbelievable!

No other words really!

You ARE amazing, and what a great response to the chemo with the ca 19.9!

Enjoy your skiing, and yes, pretty sure you are setting many records Mark!

Please DO set a few more longer ones!

With all our best,

Jeni, and everyone else at PCUK.

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

Re: My Journey So Far

Postby J_T » Thu Feb 04, 2016 8:42 pm

Yes Mark, what Jeni said! A-MAZING!

I have already pointed a new member in the direction of your thread as it's so positive. Keep us up to speed with the possibility of a second zapping of Nanoknife, that would be brilliant.

Have a fabulous holiday.

Very best wishes to you and your family.

Julia x

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: My Journey So Far

Postby sandraW » Fri Feb 05, 2016 10:18 am

Mark,
What truly wonderful news, I hope you enjoy your skiing and getting back to California even more.
Great news on the CA 19 markers too take care Sandrax x

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

Re: My Journey So Far

Postby Didge » Fri Feb 05, 2016 1:10 pm

Mark that is wonderful news. I felt my spirits lifting as I read it. I also feel that the longer you can keep going the more things might turn up to keep it at bay. Didge x

PCUK Nurse Jeni
Posts: 1078
Joined: Mon Jun 14, 2010 1:30 pm

Re: My Journey So Far

Postby PCUK Nurse Jeni » Fri Feb 05, 2016 1:30 pm

Exactly Didge - thats what I said to the other nurses.

Jeni.

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

Re: My Journey So Far

Postby LMD » Fri Feb 05, 2016 10:14 pm

Dear Mark
Wishing you a fabulous skiing holiday! Good to read things are going well.. Long may it continue!
All the best
LMD

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

Re: My Journey So Far

Postby EmmaR » Fri Feb 05, 2016 10:55 pm

Yes Long may it continue !!
Best Wishes
EmmaR x

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: My Journey So Far

Postby Sueoliver » Sat Feb 06, 2016 8:06 am

Mark this is wonderful news and it made me smile. Have a great holiday and long may it all continue.
Very best wishes to you and your family.
Sue x