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My Journey So Far


MSH
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Hi Mark,

This is really great news and fabulous that you are planning ahead into next year and enjoying life to the full.

I do agree with Didge that the sufferers with private medical care to seem to get a better outcomes as the NHS says one first line drug only.

Trevor never even got a chance at Gemcitabine as they waited too long to put the drain in and his jaundice just overtook his body, still got that one to sort out, but its early days yet to be taking that on. Still at least he didn't suffer for long and that itself is a blessing in disguise, in the nature of the disease. Just so pleased that you are doing so well take care sandrax x

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I always enjoy reading your updates and glad things are doing well for you! You're doing a great job of keeping on top of things though I understand your frustration at the cyber knife issues, nobody seems to do things with any urgency. Enjoy your holidays and I'm jealous of your USA trip, everyone told us not to go there as it's too risky if things take a turn for the worse due to the cost of any treatment there. If things are good for us still in autumn I'm going to suggest it again.

Rob

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  • 2 months later...

Given that we start from a bad place, and there aren't too many places worse than inoperable metastatic pancreatic carcinoma, in many respects I have been very fortunate. The disease has now responded on two occasions to chemotherapy giving me a good quality of life. The only symptom I have had, aside from the initial jaundice has been pain, and as this has cleared quickly with the chemo, I am just left with the side effects from Folfirinox. I am largely unaware of the worst of these which is the effects on bone marrow, making me a little anaemic and depressing my neutrophils making me vulnerable to infection, though this is more cyclical. The other effects are mainly the neuropathy

which I think must now be permanent, though this is much less prominent now then when I finished my first course of Folfirinox, and thinning hair which is minor and in any case temporary.


In particular I have escaped two very common accompaniments of the disease, and treatment, fatigue and poor appetite. I lost about half a stone when I was jaundiced but after that my weight crept slowly up. Things came to head in Canada when I stepped on some scales when leaving a restaurant and read 202lbs. I have never been that heavy and things

weren't helped by the large mirrors found in the bathrooms of our various accommodations. A waitress later told me that the scales weighed about 7lbs too heavy, don't ask me what scales which weigh heavy are doing in a restaurant in the first place. I have some concern about diabetes as I am supposed to have chronic pancreatitis and when a fasting blood sugar came back a little high, I decided action was called for. It hasn't been easy but as of this morning I weigh 164lbs putting my BMI in the normal range at 24.2. I have been helped with my weight loss by returning to an old pastime, for the past three months I have been hiking the Cheviot hills. I live close to a long distance footpath called St Cuthbert's Way, 62.5 miles from Melrose to Holy Island, and after tramping the part which crosses the Cheviots often enough, I have determined to attempt the whole thing next week. As part of my preparation I did a longish walk yesterday of some sixteen miles, not too bad considering it was within a week of having chemo. Let's hope for sunshine next week, or at least an absence of rain.


Despite my current wellbeing I can't forget that I have a disease which though controlled, isn't going away. The CA19-9 reading on my return from America proved to be a lowpoint, and since then the reading has risen at intervals to 298. I had hoped to see a further reduction in this given that I have had four further cycles of Folfirinox, making 25 in total. When I saw my oncologist last week, she was to my mind surprisingly cautious saying that we were now in the realms of maintainance chemotherapy, and that she would like a second opinion from a more specialised oncologist. I actually recognised the name as she had been copied in to my letters when I was with the regional team. Anyway the upshot is that I am on Folfirinox four weekly at the moment, which is what I had in mind at this stage. This also makes things a little easier to plan for, and we intend to take the car to France and Spain next month, followed by a trip to the imperial cities of Morocco in October something Diane and I have talked about for a while. I can't rely on my current health continuing so we must take advantage whilst it remains good.


My best wishes to all affected by this dreadful illness.


Mark

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PCUK Nurse Jeni

Dear Mark,


Thanks so much for sharing this positive and inspiring update.


It really is great to read what has been happening with you, and your escapades on the hills! What an inspiration to walk 16 miles and attempting more - absolutely unbelievable - congrats on this one and I hope the next one is even better and the rain keeps away.


This is very interesting about the 4 weekly Folfirinox - and yes, the realms of maintenance chemo is an interesting debate. I am encouraged to hear about you being switched to a 4 weekly regime - I wonder if this is something which will be adapted into protocol over time, as it would be really good if this happened, and we were seeing more people with metastatic disease able to have disease control while having some quality of life and not having to have chemo every week (as with Gemcitabine) or 2 weeks with folfirinox.


I hope that you continue to do very well Mark, and enjoy your road trips to France and Spain. utterly deserved.


Kind regards,


Jeni, Support Team.

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Hi Mark

I really enjoyed reading your positive update and I truly think you are amazing. Enjoy your road trip to France and Spain and I hope you continue like this for a very long time.


Love Sue x

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  • 2 months later...

After weeks of being careful with my diet it was something of a change to deliberately load up on the calories in a Melrose restaurant prior to my walk. Fortunately the weather was kind and I really enjoyed what was in effect a mini-adventure. Three hard walking days covering something over twenty miles a day with a 28 lb pack and two nights of wild camping felt quite an achievement. The only hitch was on the night before the final day when the cramped space in my tent caused the end of the central line to be detached. Technically this should have been clamped but after thinking of my options for a couple of minutes I decided to wait until the next day and finish my walk. I then enjoyed two good holidays, we got as far south as Toledo just below Madrid. I remember some years ago when I drove to Barcelona, getting into the city was easy, but it took hours to find the right road out. It is so difficult when all the names on the signs are meaningless. This time I had the benefit of a sat nav and even driving through large cities was a breeze. Morocco was a fascinating place, a mix of ancient and modern. Ifran could easily pass as a town in France, whilst the shepherds watching over their flocks has probably not changed from biblical times.


I have been aware of an abdominal sensation for months now. This was for most of that time only a mild background sensation but it has recently become more of a problem. It stopped me sleeping a couple of nights in Morocco, at least until I found where they sold alcohol. It is at its worst first thing on a morning as all my pain has been, I suspect because recumbency exacerbates the swelling. I now take paracetamol regularly and 10 mgs of MST twice daily. This for the moment allows me to forget the pain, but the problem is that whilst most pain will improve over time, this is only likely to get worse. I had a second opinion from another oncologist who wasn't happy with me continuing with Folfirinox and arranged for a CT scan, my first in almost a year. In some respects this was good, the primary tumour had grown slightly and the bony lesions have responded well to the treatment. The upshot is that I am changing chemo to Gemcitabine, and I had the first course this afternoon. I am disappointed that the Folfirinox which has served me so well, no longer seems to be effective, though I suppose it was always going to happen at some stage, and I should be thankful it has lasted so long. I have had 26 courses in all. I had the central line removed yesterday, and not before time. The last time it was flushed was followed by a day of fever with rigors. This settled inside 24 hours but recurred briefly a couple of times the following week.


Apart from the abdominal pain I consider my health to be good. However the bloods done yesterday were a bit alarming. My Ca 19-9 has now risen to 1864, and additionally my LFTs are rising suggesting the jaundice may be returning. I have a very mild skin irritation, and I think I will contact my surgeon, last seen almost three years ago, on Monday. It is likely that I will need a stent refitting, and I don't want to risk the treatment being interrupted. I have to hope that I respond to Gemcitabine and it is good at least to have a plan of action after weeks of being in limbo. I do though have the feeling of a corner turned.


I suspect my next update will be sooner than 3 months.


Best wishes to all.


Mark.

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Hello Mark, your trip sounds amazing!


I know you felt, quite some time ago, that your first stent had 'disappeared' somehow, so time now for refitting! Get it done as soon as, that skin irritation can drive you nuts, it did Ray!


Sounds like on the whole you are still faring quite well. I hope with a new stent, and gemcitabine doing a good job on you, you will have many more adventures around the globe with Diane.


Very best wishes

Julia x

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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

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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

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PCUK Nurse Jeni

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.

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  • 1 month later...

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

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  • 3 weeks later...

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

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PCUK Nurse Jeni

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.

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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

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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

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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

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