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

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

Re: Good Mid-FOLFIRINOX CT Result

Postby J_T » Thu Nov 14, 2013 9:10 pm

Great news about your mum Sarah, you must be feeling very positive about future treatments. Great work on your part!

Cathy, :( So sorry you have to contact PALs, it seems quite a few of us will be going down that route - not good at all. Glad to hear that Jonathan is generally well though. Hope he's still managing to enjoy his pint!

Love
Julia x

(is anyone else's 'Reply to Post' as sluggish as mine?

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

Re: Good Mid-FOLFIRINOX CT Result

Postby Cathy » Thu Nov 14, 2013 9:30 pm

Hiya Julia

YES! Very sluggish... Thought it might be my wifi..

Jonathan has been looking forward to the weekend, pub tomorrow and curry Saturday all being well. Not sure about a curry with his current tummy troubles but its what he wants and as he reminds me, ad nauseum, "they said to eat and drink whatever I want".

He's not been sooo great today but hopefully will perk up again tomorrow. In fact, he seems perkier even as I write now.

Tomorrow my PALs campaign starts proper.

Hope you are doing ok?

Loads of love

Cathy xxx

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

Re: Good Mid-FOLFIRINOX CT Result

Postby J_T » Thu Nov 14, 2013 9:58 pm

I hate curry lol. All power to Jonathan's elbow though! :D

I'm not bad, thanks Cathy. Our Macmillan nurse came to see me and Kate today. We had a long chat, and she is so good and was really helpful with lots of stuff. We can ring her anytime we like. Nice to know that. x

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Good Mid-FOLFIRINOX CT Result

Postby InfoForMum » Thu Nov 14, 2013 10:12 pm

Me three-sluggish replying that is. Julia, glad to hear you're getting some support to do all the re-going over this is likely to take. I found having a medically experienced friend to work through stuff that happened to my Dad made a big difference. Wasn't so much the emotions as ironing out any "what if"s and "did I do enough/the right thing"s, carefully exposing the stuff I felt most raw about, then poking at it until I felt less raw and could safely tuck it away in my head somewhere it wouldn't ambush me.

Ramble ramble ramble. Sorry hon, I do run off at the mouth. Like I said at the start, glad you're getting some good support.

Thank you Nikki for your support too. I noticed you posted on Arlenes threat [meant thread, but think that's an appropriately freudian slip!] too about some of the hardships suffered. Rest assured if I can help in any way I will.

And Cathy I have to say, and Jonathan mustn't take offence, that that post sooo reminded me of my daughter. Our convo - no you can't have another sweet. It's one halloween sweet a day. Her - Well Charlottes Mum said it doesn't do any harm once in a while and she can have as many as she likes....hmmmmm. Back in our PC reality it's got to be the best excuse to just do anything that makes you feel good hasn't it and besides I don't think the "my house my rules" chat followed by "if you make a fuss it's going to be the naughty corner" would work for you ;-)

Love to all

Sarah
XXX

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

Re: Good Mid-FOLFIRINOX CT Result

Postby Cathy » Thu Nov 14, 2013 11:13 pm

Ha ha ha....

He's a big b*gger - cant see him fitting in a corner, even if I managed to somehow drag him there. Entice him with a fag maybe (ahem!).

That is really great about the nurse Julia, even if you decide you don't need that help it is sooo good to know it is there for you and Kate.

Love you ladies

Cathy xxx

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Good Mid-FOLFIRINOX CT Result

Postby nikkis » Fri Nov 15, 2013 12:16 pm

Dear Sarah,
Paul was first seen at a certain hospital that is being investigated at the moment re their cancer services, so actually hoping this means that if we get in touch now, SOMEONE WILL LISTEN! Of course should be writing the letter now, rather than just talking about it! Will let you know our progress.
Take care all, and happy complaining,
Nikki

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

Re: Good Mid-FOLFIRINOX CT Result

Postby cestrian » Fri Nov 15, 2013 12:52 pm

Post Reply function won't work at all now on my Kindle and so slow even on my superfast laptop!! Proves the old adage "if it ain't broke don't fix it"!!

Good luck to all of you carers on here with getting the proper support that you need. Apart from a touch of "Montezuma's revenge" that I've been trying to blame on my Radioactive Mugga scan and litre of gunge for my CT scan I'm still doing fine and have put on another pound this last week despite the squitters so all very good! (Sadly it seems likely it was the large scotch I had on Sunday that has upset my digestion but the Loperamide has pretty well done the trick!)

Apart from seeing my Clinical Trial team I currently have no other medical intervention apart from routine reviews with my GP, really to keep him in the loop as to my progress.

Got my picture on the "Purple P" site as I'm sure others may have done. Getting little sympathy as I look disgustingly healthy for someone with a terminal illness! Hey Ho have to get the violin out!!

Love and Peace

Mike

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

Re: Good Mid-FOLFIRINOX CT Result

Postby J_T » Fri Nov 15, 2013 3:22 pm

Glad to hear all is fine Mike.

what is Purple P and have you got a link? Preferably with your mugshot in view :lol:

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Good Mid-FOLFIRINOX CT Result

Postby InfoForMum » Sat Nov 16, 2013 10:00 pm

Cathy we all laughed our heads off at image of Jonathan being lured or more amusingly dragged to the naughty corner :-) Surely worth the threat just for chucks ;-)

Mike, feeling you with the healthy looking vibe - where is this photo? Want to put a face to the kindness and sense of humour! Mum keeps getting "you look well!". Probably because the poster picture for chemo is no hair, and looking very unwell and Mum, on the end of her second weeks of cycle is far from that. Helps that she's actually gaining weight now too! We're so lucky.

Missed one chemo brain incident that may amuse. Mum was multitasking one morning, prepping the instant porridge and feeding the dog. All went swimmingly until she put the dogs bowl down then turned to pick up her porridge. Beautifully done except for the handful of cut up liver slowly sinking in :-S She's missing out on some protein, but did decide that was a step too far.

Wanted to share a chuckle, but also pretty poleaxed by Sue's news. Haven't found the words to post yet. I know how many good people are lost to this, but it feels like an avalanche of bereavement at the moment. My heart hurts for her and her boys.

Love to all

Sarah

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Deemed suitable for nanoknife, but onc/surgeon objecting

Postby InfoForMum » Wed Nov 20, 2013 11:26 pm

Hi All,

Been uncharacteristically quiet for a couple of days, mainly as started back to work this week and my sis has been down visiting mum. Has been lovely having her here.

I've also been researching nanoknife like a demon. Specialist reviewed her latest scans today and wants us in for a consult. Great news. Rarely if ever done as a pre-surgery option. Normally post surgery for recurrence or as a palliative option, but seems he is suggesting an attempt between chemo and surgery.

My guts are saying that's a good idea. Not ignorant of the risks of any procedure, but in all the patient experience I've found the vast majority of complications linked to the procedure have been associated with administration during surgery either for whipple or gastric/biliary bypass. The other issues raised were reoccurrance, but we all know that's always a risk, especially with vessel involvement.

The kicker is that I sought an opinion both from her local oncologist (the guy due to start radiotherapy in Jan) and her surgeon and both think it's a bad idea. Neither want to have something untried derail the current plan for radiation and surgery. I totally take that on board, but patient experience in the states is different and at least 3 people were in a similar situation with local hospitals inexperienced in nanoknife saying DON'T. Each went ahead and each went on to successful whipple and coincidently all are recurrence free at 12 months, 2 years and 3 years respectively.

3 folk doesn't make an arguement to go against advice of much liked and trusted professionals, but you only get one shot at kicking this buggers ass and I'm struggling to separate the caution about newness and "protocol paralysis" from the medical evidence.

Mum has decided to go for the nanoknife consult independently and reserve judgement until we've spoken to the main man. May then have to have the very difficult convo with current guys to see if they can have minds changed and if they'll kick us off their lists if we go against their advice. The other biggie is the insurers. Without a proper referral we're unlikely to get cover. Without it's about £14,000 for consult and surgery.

Still in a very, very fortunate position, but not resting if there's something better can be done.

Very keen to find out how David got on with his nanoknife treatment too.

In case anyone is interested here's a link to a US forum - Cancer Compass, with a long involved nanoknife thread with lots of posts about research and trial results for IRE and other chemo/immunological treatment options. PhilJax is a prolific and informative poster, but is notably forceful in his support of nanoknife. In between are balancing patient perspectives - all 24 pages of it!

http://www.cancercompass.com/message-bo ... 3127,0.htm

Take care all

Sarah
XXX

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

Re: Deemed suitable for nanoknife, but onc/surgeon objecting

Postby Cathy » Thu Nov 21, 2013 5:57 pm

Hi Sarah

Well, what a dilemma!!

It sounds as if you have a very sensible plan however and maybe talk through more with your local team what their actual concerns are afterwards (if you haven't already of course).

Keep us updated

Cathy xx

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Deemed suitable for nanoknife, but onc/surgeon objecting

Postby nikkis » Thu Nov 21, 2013 7:13 pm

Hi Sarah, you are a demon researcher! If you do decide to go ahead Would an option be if your mum's current docs don't agree with using the nano knife pre surgery, to transfer her care to someone that nano knife doc recommends? That might mean going private for all her care, and probably having to go more regularly to London but it would mean she would then be covered by her insurance and therefore not have to fork out?
Nikki

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

Re: Deemed suitable for nanoknife, but onc/surgeon objecting

Postby cestrian » Thu Nov 21, 2013 8:40 pm

Sorry all the site's been so slow I've only been dipping in and out when possible but it now seems to have been fixed! I'll get the link to Purple P from my daughter and post it on here as soon as I can!!

Love and Peace

Mike

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

Re: Deemed suitable for nanoknife, but onc/surgeon objecting

Postby J_T » Thu Nov 21, 2013 11:43 pm

Sarah you're in usual battle mode, research done, go girl!

My twopence worth? Go for it, as you say, only one chance. Grab it.

Much love

Julia x

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Deemed suitable for nanoknife, but onc/surgeon objecting

Postby InfoForMum » Fri Nov 22, 2013 9:46 pm

Ladies, I love you all. Between you and my Mum I've kept faith in my research and we're off to see the nanoknife doc in London on Wednesday next week. Both objections from current docs are based on lack of evidence linked to this in large trials and the fact that neo nanoknife for operable tumours isnt protocol in their centres. My concern that Mum would be totally put off by those objections was unfounded. She's been increadibly logical and measured in considering this and my favourite comment was "well if no-one bloody tries it they'll never know if it's a good option will they!". She never ceases to impress me.

Nikkis, you took the thought out of our head. I said to Mum that the only question she needs to ask if she wants to go for this is "if I do this against your recommendations does that mean you will refuse to treat me afterwards?" and if the answer is yes Mum said she'll ask the nanoknife doc and I'll ask the wonderful nurses here who to talk to next.

It probably makes no sense switching between reading reams of medical publications and journals to understand the full technical SP about things, then talking the next moment about trusting my gut. But as a combination it seems to have worked so far. I've been so, so careful to present a balanced view to Mum, but our partnership wouldn't have worked without her intelligence, strength, bravery, positivity and humour.

And Mike - do get on with that link. Looking forward to it!

Love and hugs

Sarah
Last edited by InfoForMum on Fri Nov 22, 2013 10:37 pm, edited 2 times in total.