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My Journey So Far


MSH
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PCUK Nurse Jeni

Wonderful news Mark, as Steve said, especially about your granddaughter. How lovely. Hope her and mum are both recovering well now! And great to hear that you are back to such good strength and being able to participate in sport etc...A huge well done.


Yes, you are certainly an inspiration on here, along with your "mate" Steve!


Keep up the good work both of you.


Jeni.

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Mark, congratulations on your beautiful granddaughter and glad you are doing so well. It's really helpful to read about your and others progress as it help us. We were convinced, particularly as the GP, also a friend had told James he won't be around for long to enjoy what life he had left, a bit difficult when told that by an 'expert' and friend!


Anyway you and Steve and others have really helped us not to make final arrangements just yet, but it is still so hard.





Fiona X

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  • 1 month later...

Today marks six months since I had the Nanoknife, and it is almost nine months since I finished my chemotherapy. I was able to persuade my oncologist to give me an appointment for six months arguing that if anything were to develop I could always get an earlier one. My quality of life is excellent and I don't feel restricted at all. The only fly in the ointment is a slight left sided chest discomfort which I've had for a few weeks. This seems muscular and doesn't interfere with my indoor rowing, but if it doesn't settle soon I'll see my GP.


I continue to take Creon before meals but don't seem to miss them if I forget them when eating out for instance. I remember being told I wouldn't be able to stop them because the stent blocked pancreatic secretion, but then remembered being shown the stent as a flexible mesh. Once the jaundice was away I didn't have too much trouble from my tummy, perhaps a bit more wind and a greater sense of urgency. I am happy to report that even these have now settled and I would say I'm back to what I consider normal. It really is hard to believe I have chronic pancreatitis.


The neuropathy continues to improve, and now only affects the extreme ends of my fingers and toes. I no longer have to look in the mirror to fasten shirt buttons I can't see, and was rather proud recently at opening a difficult to reach fire alarm purely guided by touch.



My best wishes to all affected by this dreadful disease.



Mark

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Great news Mark, long may it continue, and thanks for letting us know, it really helps to hear people of doing well take care sandrax

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  • 2 weeks later...

How quickly things change at least at the psychological level. That fly in the ointment has just got somewhat bigger. As soon as I had made an appointment with my GP, I began to have a pain in my back on a morning, remember the secondary in T5. My GP took bloods and arranged a CXR, and phoned later that evening to say that the CA19-9 had risen to 1609. I have e-mailed my oncologist who has arranged a CT and MRI scan and I am reconciled to needing some further treatment.


It's really when I wake up on a morning that I evaluate things. For the past few months I have felt very well with no symptoms at all. Now I have a catch in my left chest when I take a deep breathe and this morning I had a discomfort around my left collar bone rather than my back. Bending down to the left was also a little uncomfortable, at least first thing. I am now taking regular Paracetamol after a gap of over a year.


Writing this I am enjoying a glass of wine, and I had a tough session in the gym tonight so in one sense I am able to function pretty well. I had been saying that the horizon had gradually lifted on the day to day existence I had last year so I was starting to look further ahead. All of a sudden that horizon seems a whole lot cloudier.


We shall see.


Mark

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Hi again Mark and sorry to hear your Gremlin seems to be coming active again. This damned disease seems to allow some of us to believe we are holding it at bay for now, but then reminds us that it is calling the shots and that we can only react to it's repeated onslaught. It is however great to hear that you are still very active and enjoying the occasional glass of wine. I am sure you will deal with any treatment in your usual positive manner and as a result move you into another period of relative 'normality'.


Good luck with the scans and whatever follows.



Steve

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Hi Mark


Ditto from me.


Jonathan used to complain of a pain in his left shoulder - I'm not sure if it is the same thing but it is good that you are on the case so quickly.


Cathy xx

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I'm wishing you all the luck in the world Mark, for continued wellness. I know you will do your utmost to chase those clouds away.


Best wishes

Julia x

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Hi Mark,


I rarely post now but keep an eye on a few folks, including you.

I am sorry there are clouds about, but it sounds like you are on the case and ready for the next phase of battle. I send all good wishes and enjoy that wine !


Bee xx

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It was with some trepidation that I met with my oncologist today. I continue to have pain especially on a morning from my left chest. It's puzzling because it changes sometimes being more in my back, the next day more in the ribs. The slight catch on a deep breathe has actually improved. Anyway we met to discuss my recent CT scan. I had started to think there may be more secondaries to cause the pain. In the event there doesn't seem to be much change on the scan and little to account for the pain. One big difference is that the stent has disappeared. This is quite heartening as my presentation was with obstructive jaundice and the fact that I don't need the stent now suggests the primary tumour has responded well to treatment. I have said before that missing the odd Creon doesn't seem to make a difference, I'm going to stop them completely to see what happens.


The next step is to have an MRI and there were mutterings about a possible PET. I am reconciled to having further chemo, but my oncologist is more reluctant saying she'd like to see some evidence of disease activity, especially as I am so well in myself. It's keeping me that way that might be the tricky bit.

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Well apart from the pain it all sounds to be going well Mark and long may it continue. I assume they have just told you to take paracetamol or similar?


I recall you saying in a much earlier post 'no thanks' to waiting for more disease activity before you started more treatment. Will you press for more treatment sooner rather than later or have you come round to their way of thinking? I guess if you feel very well choosing to go back on chemotherapy would be difficult.


I'm sure, together with your team, you will come to the right decision, you have certainly got it right so far!


Very best wishes


Julia x

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The stent must have passed through the system so to speak, with being metal it would have been picked up easily on the scan of CXR if present. It was there in April, so lost sometime in the last three months. Whether the Nanoknife has loosened it or perhaps my activity on the rowing machine I don't know.

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  • 4 weeks later...

It feels very strange for me at the moment. I feel in limbo waiting for something to happen but on the other hand a great deal has happened since my last update. I went for an MRI scan on the 29th of July and my oncologist phoned the following morning asking if she could see me that lunchtime. We have a cause for the pain in that the bony metastasis which has been indolent in one of my vertebrae for the past year is now growing and is affecting the nerve root, the rib and the adjoining vertebrae. The plan was to have some palliative radiotherapy followed by further Folfirinox.


The problem here is that at some stage this will affect the spinal cord, and I will lose the use of my legs. As the cyberknife is potentially curative I had a trip to London to explore the possibility of having this treatment. This involves an MDT meeting which decided I was suitable, so I went to have preparatory scans, a CT an MRI of the affected area a fortnight ago. Despite this only being ten days after the Newcastle scan there was something on these which the oncologist wasn't happy about and I had another MRI last Friday. This shows that three vertebra are now involved and whilst the cyberknife could treat two bones it can't treat three.


You will understand my disappointment and frustration as I have been pushing for this procedure for over eight months now, and when they finally agree to it, the tumour spreads so quickly it makes it unfeasible. So much to his claim that a week won't make any difference. As well as being disappointed that the cyberknife can't go ahead I have missed my slots for the line insertion and conventional radiotherapy.


I'm not feeling too bad in myself. Except for an hour or two on a morning the pain is well controlled with morphine, supplemented with a little alcohol. I can do most things but am restricting my activities as too much exertion aggravates the pain. With luck the next fortnight should see me treated with radiotherapy which should ease the pain and embark on further treatment with Folfirinox. If I respond well then the cyberknife could again be an option.


I have to remain positive, but this is one hell of a roller-coaster ride.


Mark

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ah Mark sorry to hear about your latest scan but folfirinox should do the trick.

Its now time to ride the high part of the roller coaster.

love Jayne

x

PS- We are based in Newcastle too !

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Dear Mark,

Staying positive is definitely key, but it's blimming hard when sometimes everything seems to be going against you. It sounds like you still have plenty of options so I really hope things are looking better again soon.

Best wishes,

Nikki

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Mark,

no wonder you are frustrated, there just doesn't seem to be any urgency, Trevor should have had his scan first week in August, we have finally got an appointment for 2nd September, I rang the consultant's secretary as asked, to arrange an appointment to see him the following Monday the 8th to be told clinics in September are scaled back and she doesn't know when we will get an appointment but she will be in touch. I asked if she or someone could arrange for Trevor to have a blood test 3-4 days before the appointment, as the professor said that, unusually, he was going to use Trevor'r tumour markers as a guide as they respond to what the tumours are doing. We know they have risen from 220 on the 19th May to 846 on 30th June, but have not seen the consultant since the 30th June before he had the results. She said that wasn't possible, but she would speak to the professor and get back to me, still waiting of course. I just thought that if we had the bloods before the appointment, they would have all the information to hand, and as they seem so busy it would save time having to have another appointment, but then what do I know........

I hope you get the radiotherapy asap and that it sorts out the pain, and the the fox follows soon after, and that the cyber knife is then possible.

I am not surprised you need a "little" alcohol to smooth the way, its a wonder we are all

not raving alcoholics with what this sneaky disease throws at us, and positivity is sometime hard to find but as the saying goes, we must just keep keeping on ! take care sandrax

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Gosh Mark this Must have been a challenging few weeks for you and I can well understand your frustrations. Good grief do they learn nothing with this 'B' disease. Time is of the essence ALWAYS!


I do hope you get the treatment you deserve and it does its thang and you can move on to Cyberknife at some juncture.


Keep well.


Julia x

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Mark, sure sounds like frustration with a capital F! You have always heen so clear in your mind exactly what needs to be done and when, to the point that you probably made the specialist's decisions much easier and still they manage to thwart your well thought out plans. I am really sorry to hear that they have caused this unnecessary deviation from your plan, but pleased that you have redressed the plan based on the recent unwelcome developments.


Good luck with the radiotherapy and subsequent treatments. I am sure we shall all be watching this space with eager anticipation as to how your fight develops.


Take care


Steve

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