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Hi Mike,


Sounds like things are moving forward which is great! I do hope the pain procedure works out.


Interesting that you are going to be treated in a trial! Were you not offered any of the standard treatment regimens? Do you know what the trial is?


K

x

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  • PCUK Nurse Jeni

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Hi


It's great that you are so happy with the service you have been having and the very best of luck for your procedure.


It would be really interesting to know that the trial is if you know?


xx

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Mike, so pleased for you. Things all sounding positive, apart from your wife's understandable blip. It IS comforting when you feel you are getting the best treatment.


Like the others, interested to know about the trial. Did you get offered Folirinox or Gemcap or did they offer the trial right away. (I'm nosey by nature lol!)


Julia

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Mike, glad you have some answers and sounds like a plan is formulating, great. I too am wondering what the trial is all about, nosey bunch aren't we!

Sounds like you have a supportive family around you, no doubt you will all have good and bad days along the way but at least you can help one another.

And have a good offload on here !!

Bee

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Thanks all but I'm afraid I've no information about the actual treatment the trial will involve. Having Biopsy next Friday prior to getting underway. I guess my feeling is that there is nothing to lose and as long as the side effects are not too dire then I am happy to give it a whirl. Even if I only get some minor benefit or even none at all maybe I Will play a very small part in helping someone else who is affected.


I cannot speak highly enough of "my team" - everyone involved has been wonderful and the sister who did my pre-assessment at [Hospital name removed - moderator] yesterday was care personified. Having 100% confidence in the care I am receiving is such a help as of course is the love and support of family and friends - not to mention the nosey, or should that be caring, bunch on this forum.


Love and Peace


Mike

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PCUK Nurse Jeni

Hi All,


Just to clarify a little bit about the clinical trial v's standard treatment. Sometimes, if a person is eligible for a clinical trial in the first instance, they can be offered this , usually as well as options for the standard chemotherapy. Not everyone will meet the inclusion criteria for a clinical trial, so it might just be that in Mike's case, he is suitable for a clinical trial straight up. Whatever, he should be offered options anyhow, and it is up to him to decide then, based on all the information he has been provided with, what he wants to do.


The government want us to offer clinical trials to at least 20% of people diagnosed with cancer. This is the way forward in terms of deciding future treatments, ways of giving treatment etc...They are voluntary, and a person should never be coerced or pressurised into going in, but be happy with their decision. In pancreatic cancer, there are not too many trials for us to choose from, unfortunately, compared to some other cancers where there will be a huge array.


Whatever you choose Mike, I hope it is very successful.


Kind regards,


Jeni.

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Hi All


I cannot begin to express my thanks to Mr {name removed - moderator} and his team at [hospital name removed - moderator] who yesterday carried out the key-hole surgery to relieve my pain. Worked like a dream and I could tell how effective it had been as soon as I'd regained consciousness. In fact I assumed that the anaesthetic and relief they'd given me for the op were still working but after a day in bed still pain free without taking any drugs I realised it had been 100% successful. At lunchtime I ate far more than usual, demolishing a very good chicken and leek pie and veg followed by pears and cream!


Discharged early evening and I have not long woken up from my first full night's sleep for months. Taking it easy today as I am in for my Biopsy on Friday - a stark reminder that yesterday 's operation although important to me is just a side show.


I'll report back to base as soon as I learn more about the trial.


As a little aside I must just mention the kind act of one of my neighbours who I do not really know well as they are a little way away from us. While I was in hospital he came round and mowed both front and back lawns, the latter twice as "it didn't look right" after the first cut!! How kind and thoughtful people are! My son will be delighted as this is usually one of the chores he does on his weekend visits from London. Mind you by Saturday they will need doing again.


Best wishes to all - Peace and Love


Mike

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:does happy dance: Mike, this is excellent news! So, so pleased for you. Good luck with the next stage.


The story of your neighbour's kind gesture had me filling up! High five that guy!


Love and peace


Julia x

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Hi Mike


Fantastic news! I am really really happy for you - what a relief!



My partner was also offered a clinical trial when first diagnosed but unfortunately, for that trial, we discovered he didn't fulfill all the criteria (he has an irregular heartbeat). So keep posing us your updates and details of yours


Cathy xx.

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PCUK Nurse Jeni

Hi Mike,


This is fantastic news! Very good, and so pleased to hear that you are still pain free - long may it last. Are you able to find out the exact name of the keyhole procedure, so that we might be able to direct others to be able to ask for this, should they have a lot of pain? Do you know if it was a nerve block? If you are able to, please do post it on here, just so that others might benefit too.


Such a lovely story about your neighbours mowing the lawns. That is so lovely of them, and really shows how human kindness can bring a smile and some hope into some of the situations which are hard to bear otherwise. Perhaps you might become more acquainted now!


Take care Mike,


Jeni.

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Hi All


Firstly apologies to mods for naming names in the rush of euphoria at being pain free for the first time in a couple of months!


I'm afraid I can't decipher the technical name of the key-hole procedure beyond the following attempt. "Bilateral Horacosopic Splandnicectomy". Described to me in layman's terms as a nerve separation procedure to relieve the pancreatic pain which it has certainly achieved in spades!


My GP has told me that my team have developed key-hole procedures for a number of other operations that are commonly carried out as open surgery such as cancer of the oesophagus.


Still a bit weary but up for my Biopsy tomorrow - onwards and upwards! Now weaning off the morphine carefully as I no longer need anything but a little paracetamol for the ache from the incisions. Off for a refreshing bath then think I'll give my pack of four Jack Russell's a walk round the village -they've been a bit neglected for a day or two. As I write one of them has invaded the bed so time to rise and shine!


Best wishes Peace and Love


Mike

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PCUK Nurse Jeni

Hi Mike,


Thanks for this, and thanks MSH for the link!


Mike - no problem about the names. We will aim to remove anything like this, so as long as you guys are aware of this, and not "upset" by it. Its just to be careful for the health professionals. No worries at all.


Great to hear that this has worked so well! Just wonder if this might be an option for others also - I will have a good read of MSH's link.


Enjoy your dog walking! They will probably be over protective of you these days - dogs have a real knack of knowing when things are not all "honkey dorey"!!!


Thanks for your posts - keep them coming!


Jeni.

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  • 2 weeks later...

Hi All


Don't think I realised how much the general anaesthetic for key-hole surgery followed only a couple of days later by liver biopsy had taken out of me! Possibly because I usually have high blood pressure but it dropped quite drastically during this time.


In the meantime I've started on high calorie supplement drinks and between these and tempus fugit I've felt felt much better this week. Managed to walk a mile and a Half with son and dogs on Sunday and have generally felt much more energetic and comfortable this week - one day at a time.


Seeing professor on Wednesday re clinical trial on Wednesday as biopsy confirmed cancer. Also meeting dieticians this week along with usual review with GP. Feel up for chemo but only time will tell.


So sad to read Mandy' s experiences of her late husband's treatment - it must be more of a lottery than I ever thought and I just count my blessings that I have such a brilliant team looking after me at the 3 hospitals,GP and now McMillan.


Wonderful surprise last week when totally unannounced my great friend Nick who lives in Lanzarote strolled into the kitchen. Could have knocked me over with a feather - he's visited 3 times but flies home tomorrow after boosting my spirits no end. On the other hand a very tearful phone call as I told another friend but we've met up a couple of times since while Nick has been here and she's now converted to Smiley, positive mode!


Love and Peace


Mike

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Hi Mike,


Please may I ask what the clinical trial is that you are waiting to have?


I also await to hear from a Prof in London who I ask about the possibility of a trial, but I would be very grateful if you were able to tell me about yours?


Thanks

Linda

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Hi Linda


I will post details once I've seen specialist tomorrow. My GP, and of course, Dianne on here have provided information regarding the nature of clinical trials. I have to see the professor, get all the the information I can and then decide if it is right for me though of course I will be guided by the experts. I am keen to try it out but do lean towards the view that quality of life is as important as quantity. I therefore need to be sure that this is right for me. Again I cannot stress how important a part the the support team I am lucky enough to have play in taking such a decision.


Peace and Love


Mike

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Hi All


A very positive meeting with the team involved in the clinical trial. Very impressed with the attention to detail and obvious expertise. Most importantly all very willing to listen and answer any concern and totally committed to patient care and welfare as demonstrated by their relationship with patients already attending for treatment.


The trial is a 50/50 double blind trial using Gemcitabine in combination with MSC 1936369B a MEK inhibitor. I decided on the spot to take part so chemo should start at the end the month when they have done the other tests required. At the very least I will be treated with Gemcitabine and a placebo in the care of these brilliant people.


We all came away feeling very uplifted as they had given a rosier prognosis than I had received previously and whilst I now have to face up to the effects of the chemo I can do so with a lot of confidence in the care and support I know I will receive.


I always take the opportunity to tell all involved how grateful I am to live in a part of the country where the care is so well delivered.


Love and Peace


Mike

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Sounds like you had a really good day Mike. I am sure we will follow your progress with real interest. Hope all goes well and that your up-beat attitude rubs off on all of us!


Enjoy your weekend



Steve

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Nice to hear you sounding so positive Mike.


We too will now be looking to see if Ray is eligible to take part in a clinical trial.


Love and peace, Julia

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Hi Steve


Very imaginative title "Phase II randomised trial of MEK inhibitor MSC1936369B or placebo combined with Gemcitabine in metastatic pancreas cancer subjects".


As I have said at the very least I will be getting the standard Chemo and my main concern is how I will be affected by this but I can only hope that any reaction is not too drastic.


Continue to exercise what I like to call positive realism as I have accepted there is no cure only treatment but I feel more confident that the team can deliver this and maybe give me a few extra months of reasonable quality life.


Peace and Love


Mike

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  • 2 weeks later...

Hi All


Pretty full on week of tests scans and screening to confirm eligibility for inclusion in the MEK inhibitor clinical trial. Hope they go OK if for no other reason than the trial pays travelling expenses as it is commercial!


Whatever the results treatment starts next Wednesday for an initial period of 56 days. May the Lord give me the strength and patience to complete the course!


Peace and Love


Mike

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