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

Moderator: volmod

PCUK Nurse Jeni
Posts: 1002
Joined: Mon Jun 14, 2010 12:30 pm

Re: Welcome to this new sub forum

Postby PCUK Nurse Jeni » Wed Jun 26, 2013 9:49 am

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.

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 11:20 am

Re: Welcome to this new sub forum

Postby cestrian » Thu Jun 27, 2013 9:18 am

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

MSH
Posts: 228
Joined: Tue Apr 30, 2013 10:03 pm

Re: Welcome to this new sub forum

Postby MSH » Thu Jun 27, 2013 10:18 am

Think that would be Bilateral Thoracoscopic Splanchnicectomy, and good to hear it's stopped the pain.

http://www.surgerysymposium.org/abstrac ... _6-09.html

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

Re: Welcome to this new sub forum

Postby J_T » Thu Jun 27, 2013 10:20 am

Thanks Mike and Mark :bookmarks link:

Mike, I'll bet the dogs take YOU for a walk, lol.

Best wishes
Julia

PCUK Nurse Jeni
Posts: 1002
Joined: Mon Jun 14, 2010 12:30 pm

Re: Welcome to this new sub forum

Postby PCUK Nurse Jeni » Thu Jun 27, 2013 10:29 am

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.

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 11:20 am

Re: Welcome to this new sub forum

Postby cestrian » Mon Jul 08, 2013 9:50 pm

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

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Welcome to this new sub forum

Postby LindaH » Tue Jul 09, 2013 8:43 am

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

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 11:20 am

Re: Welcome to this new sub forum

Postby cestrian » Tue Jul 09, 2013 8:47 pm

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

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 11:20 am

Re: Welcome to this new sub forum

Postby cestrian » Fri Jul 12, 2013 6:52 am

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

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Welcome to this new sub forum

Postby Slewis7313 » Fri Jul 12, 2013 7:00 am

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

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Welcome to this new sub forum

Postby Slewis7313 » Fri Jul 12, 2013 5:33 pm

Mike, just out of interst what is the trial called?

Steve

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

Re: Welcome to this new sub forum

Postby J_T » Fri Jul 12, 2013 6:02 pm

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

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 11:20 am

Re: Welcome to this new sub forum

Postby cestrian » Sat Jul 13, 2013 1:21 pm

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

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 11:20 am

Re: Welcome to this new sub forum

Postby cestrian » Mon Jul 22, 2013 8:12 am

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

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

Re: Welcome to this new sub forum

Postby J_T » Mon Jul 22, 2013 8:55 am

Great to hear treatment is imminent, very best of luck Mike x