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

Moderator: volmod

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

Re: Welcome to this new sub forum

Postby J_T » Fri Jun 14, 2013 1:35 pm

Hi Mike, all sounding very positive for you. It does make you feel so much better when the wheels start turning!

Good luck for Monday and let us know how you get on.

Julia x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Welcome to this new sub forum

Postby Cathy » Fri Jun 14, 2013 2:27 pm

Hi Mike

That sounds really excellent. It's great to have an advocate to take some of the frustration away with needing to talk to various people to get the care you need.

Everyone - just a general question.. do any of you NOT use Creon? I ask as we haven't been prescribed Creon. Jonathan hasn't lost much weight nor does he have issues with going to the loo. I was wondering if this was something we ought to be asking for anyway.....?

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Welcome to this new sub forum

Postby KATB » Fri Jun 14, 2013 2:57 pm

Cathy, dad doesn't have Creon. The onc says if he doesn't have diarrhea he doesn't need it but Jeni says this isn't true. Dad has lost a lot of weight but he's not continuing to lose it, just struggling to put any back on. I think he should have it but his oncologist is really reluctant. We had to push for him to do the test but we are still awaiting the results from that.

K
x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Welcome to this new sub forum

Postby Cathy » Fri Jun 14, 2013 4:14 pm

Hiya Kate

I've seen your posts about you needing to push for it. That must be very frustrating when you know that others don't have to.

I'll make a note to ask at our next oncologist's appointment. Jonathan has lost weight but we think only as he has had such a reduced appetite more recently when he was a bit poorly. Now he's getting better his appetite has improved no end and his legs (which were affected by the steroids) are starting to build up again (it's either that or he is determined never to need me wheel him in a wheelchair again LOL)

xx

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Welcome to this new sub forum

Postby cestrian » Thu Jun 20, 2013 11:26 am

hi All

A busy week with my first appointment with my oncologist on Monday followed by an appointment with the surgeon who does key-hole pain relief procedure,

Things are moving apace and I am booked in for the key-hole surgery next Tuesday and having the pre-assessment this afternoon. Mr {name removed - moderator}, the surgeon seemed very confident that the procedure will provide a high level of pain relief for me and whilst I know there are no guarantees this is excellent news,

The prognosis as far as my actual cancer is concerned was much as expected and it looks as if I will be involved in a clinical trial [Names removed - moderator] at {hospital names removed - moderator} probably in 2 to 3 weeks once a biopsy has been done. A slightly unfortunate result of this meeting was that my wife was quite upset as the penny dropped that we are talking about when not if. However she has my wonderful son and daughter to support her and after some close discussions has reverted to her "cock-eyed optimist" approach which does help me to stay 100% positive.

I am really pleased with the way my case is being handled and am so grateful to everyone involved and just hope the pain relief procedure works out well.

Best wishes to all - love and peace

Mike

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Welcome to this new sub forum

Postby KATB » Thu Jun 20, 2013 12:38 pm

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

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Welcome to this new sub forum

Postby Cathy » Thu Jun 20, 2013 1:05 pm

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

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

Re: Welcome to this new sub forum

Postby J_T » Thu Jun 20, 2013 2:01 pm

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

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Welcome to this new sub forum

Postby Bee » Thu Jun 20, 2013 6:33 pm

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

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Welcome to this new sub forum

Postby cestrian » Fri Jun 21, 2013 12:02 pm

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

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

Re: Welcome to this new sub forum

Postby J_T » Fri Jun 21, 2013 3:04 pm

back atcha! x

PCUK Nurse Jeni
Posts: 1015
Joined: Mon Jun 14, 2010 1:30 pm

Re: Welcome to this new sub forum

Postby PCUK Nurse Jeni » Mon Jun 24, 2013 1:20 pm

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.

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Welcome to this new sub forum

Postby cestrian » Wed Jun 26, 2013 8:15 am

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

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

Re: Welcome to this new sub forum

Postby J_T » Wed Jun 26, 2013 9:07 am

: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

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Welcome to this new sub forum

Postby Cathy » Wed Jun 26, 2013 10:38 am

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.