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

Re: CRT Starts Monday

Postby nikkis » Sat Mar 01, 2014 4:20 pm

Hi Sarah,
I think it is really great that you have had some more time to yourself and I am sure your family have appreciated seeing more of you, even if it is the back of your head while you beaver away writing your pieces! I imagine your Mum feels more confident as a result of what she has achieved without you. Sometimes, I wonder if I left Paul to cope for a little while without me, he would actually surprise himself, and feel more like the old Paul.
Good luck for Monday,
Nikki

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

Re: CRT Starts Monday

Postby Cathy » Sat Mar 01, 2014 6:54 pm

Hi Sarah

Very best of luck with the CRT scan. Here's hoping the slow improvement in appetite and weight gain reflect the fact that you will have good news :)

Cathy xxx

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

Re: CRT Starts Monday

Postby Slewis7313 » Sun Mar 02, 2014 10:54 am

Hi Sarah, whilst I understand that you may feel you have left you Mum to manage on her own for a while, it sounds as though it has spurred her on to do more for herself. It sounds as though she is driving things herself now which must be a good thing. I am certain she knows you are there and available if she really needs you. In the meantime, you have still been doing good things which will potentially help us all and for which I am sure we are all grateful. I hope things continue to pick up with your Mum and I am sure you will keep us posted.

Take care!

Steve
X

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

Re: CRT Starts Monday

Postby InfoForMum » Sun Mar 02, 2014 5:01 pm

Thanks to all of you. I actually spent the night with her last night and she brushed off any suggestion that i hadn't been doing my bit. Actually repeated what you guys said-she would have called if she needed me.

Also had some sensible feedback on why her stomach has been behaving badly and being so sore. Apparently there's a build up of bile. Not yet quite clear where. Damn shame no-one thought to say before now as anything interventional to sort is ruled out by the chemo. She's feeling much brighter knowing the potential cause though.

As always you've all helped no end and I'll keep you posted.

Sarah
XXX

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: CRT Starts Monday

Postby sandraW » Sun Mar 02, 2014 7:54 pm

Thanks Sarah, please do keep us up to date on how your Mum is doing I have followed her story with great interest, you do tell her story beautifully. Hope she continues to improve and she must be so proud and happy to have such a caring, if slightly feisty!!!, daughter,take care both of you. sandrax

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: CRT Starts Monday

Postby RLF » Mon Mar 03, 2014 12:14 pm

Good luck to your mum today with her CRT! Hope it all goes smoothly
Rob
x

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

Re: CRT Starts Monday

Postby InfoForMum » Tue Mar 04, 2014 1:43 am

After staring at the Capecitabine tabs for about an hour and a half, she finally plucked up courage to take the first batch. The RT it's self went ok, but that's a more subtly cumulative thing.

I don't want her to suffer and have reminded her she can quit any time. If she does, perhaps our wunderkind London oncologist will consider taking her on for a trial.

I will keep him posted. Thanks Sandra & Rob (Feisty indeed! - well, yeah, can be :-)

Been working hard at the alternative career too. Seems to be going well. For anyone who has anything to do with compliance in their day job, I had one of those convos where I DID say the clever thing at the time rather than think about it later and thought it deserved a picture.

pic.twitter.com/m09tqkPNu4

Love to all

Sarah

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

Re: CRT Starts Monday

Postby Slewis7313 » Tue Mar 04, 2014 9:36 am

Please wish your Mum good luck with the CRT from me as well Sarah. How many sessions is she to have? I had 28 and found this the easiest part of my treatment, but it did shrink the little devil.

Steve
X

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

Link to Mum's story on-line for Saatchi Bill and Maggie Watt

Postby InfoForMum » Fri Mar 07, 2014 3:07 pm

Thank you all for your kind wishes. The below is copied from my post on the Saatchi Bill thread as I'm seeing double from lack of sleep and kind of deals with that and a general update.

Thank you for your post on the Saatchi Bill thread Steve. The frustration comes through in spades, and mirrors mine.

As the Saatchi Bill considered my article about my Mum's situation with Nanoknife too long for their blog, I have set up my own. It also points to Maggie Watts' epetition that will compel the government to discuss the appalling situation with Pancreatic Cancer further if she gets 100K signatures by 4th April. She's half way there, but that's not enough.

Here is the link to my mum's story. If you believe in Maggie's petition or the Saatchi bill, could you help me by doing all you can by email or social media to spread the word?
Any help appreciated! And Jenni, noticed you'd already tweeted it. Thank you hon.

http://infospectives.me/2014/03/10/why- ... rt-not-to/

I've been quiet or a couple or three days doing online stuff, but also helping Mum who's now dealing with acute pain and vomiting - not expected with this CRT - so still trying to find root causes and deal with new pain relief. Doc left at 1.30am having given her 2 anti-emetics and morphine in a jab and she slept and woke up hungry. A victory. Fingers crossed tonight is better.

Thank you all for reading this, it means so much to so many even though this is a tiny contribution.

Love to all,

Sarah
XXX
Last edited by InfoForMum on Wed May 28, 2014 1:16 am, edited 1 time in total.

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: CRT Starts Monday

Postby EmmaR » Fri Mar 07, 2014 3:50 pm

Hi Sarah,
Hope you mum is feeling a little better today ,you must feel worn out with all you do championing the cause for so many of us on this forum and everything else you have to do , but there are lot of people who are really grateful for what you do and the info and links you provide , I have shared the e-petition on facebook and a lot of my friends have signed and shared .

Take care .
EmmaR XX

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

Cysts, soreness and CRT

Postby InfoForMum » Fri Mar 07, 2014 10:04 pm

Thanks Emma,

We had a good meet with her oncologist today. He showed us the "bile build up" on a scan from Jan. We realised it was what other doctors had called a cyst, the one that stopped the prof doing what he wanted to cos it was slap bang in front of the tumour. Our doc now has 2 and 2 put together (he was previously blaming the supposed bile on the Nanoknife, but has now absorbed the fact it was there before - grew in the 4 weeks between early December planning scan for IRE and early 8th Jan IRE procedure).

It seems it's likely to be the thing causing escalation of her pain. It's pressing on an area at the top of her stomach and bile duct and all those kind of good things where lots of nerves live. Every time she gets inflammation around that area, pressure already caused by the cyst increases. Hence the totally unexpected and pretty unprecedented level of pain from the IRE and CRT.

Not a confirmed thing, but the logic holds and to give him credit he's now gone off with scans in search of a pancreatic anatomical specialist to look in more detail.

There's little they can do about cysts and they're not good at self-resolving (no-one wants to biopsy or drain them cos of the risk of contents spilling and causing more probs, even a very small chance it might contain cancer cells). IF (that damned continuous IF), she gets surgery, this will go with everything else. In the mean-time I'm wondering if a nerve block might be the answer. She is worried about escalating pain meds due to resistance, and tension, pain meds and pain are all affecting her ability to eat. I'll put that forward and see what's said.

Anyone know if that kind of makes sense?

Sarah

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

Re: A New Chapter

Postby InfoForMum » Wed Mar 19, 2014 8:58 pm

Hard one to write this...

CRT impact was lessening with the exception of the nausea, but with all the unexpectedly harsh reactions to things I wanted to summarise the situation for all who'd been involved in her care. Sent a mail doing that to Surgeon, London oncologist & current oncologist. The upshot was an invite from her surgeon to come and have a detailed scan to get the full SP on this Cyst (he hadn't been told about it) and have a close look at the tumor.

Not the result we hoped for. Reported the margin to the SMA had closed with partial encasement and 2 shadows on her liver looking suspiciously like 15mm mets. No more chance of surgery.

Would have argued the toss about the shadow around the SMA given that the Nanoknife hit that area hardest and is expected to cause scar tissue and CT scans can't differentiate live from dead cells, but with the evidence of spread and the effect of the news on Mum it wasn't useful or timely. The PET and MRI done late Jan (the week after discharge from IRE) were pronounced all clear in terms of both mets and progression, so this has apparently happened since. The ballpark prognosis based on median stats for folk newly diagnosed with advanced disease is 1 year, so in or around that it's anybodies guess time-wise really.

On the plus side her health is on an upswing appetite, nausea, pain-wise. We've been offered a Celiac nerve block from a tip top guy in London and it may be Gemcitabine (if she decides to try it) will do something where other stuff has failed. There were 2x 5mm lesions seen on her liver way back in November. Folk who've followed us will know that. The MRI said they were almost certainly cystic benign things, but apparently not if (and this still isn't clear) they're the same spots that looked suspect before. If these appeared during Folfirinox they were probably seeded before that and if they were there at the 4th cycle scan and subsequent MRI, the chemo hadn't zapped them, so our little sideways wiggle to try IRE didn't impact this outcome. It's just the nature of the bugger of a disease.

Apart from looking at local palliative options we've been back in touch with our London oncologist to see if any immunological, genetic or similar less harsh trials or treatments are starting. Mum's quite enamoured of the prospect of living each day to the full rather than living treatment to treatment and scan to scan. I can't blame her, it's exhausting, but she also wants full info about the last few tools in the armoury before she decides to pitch back into a fight or gracefully withdraw.

Very new right now and feels weird for both of us having mostly normal days until a "probably the last time I'll..." moment crops up, but in true superstar form her black humour is already surfacing. A good sign.

Lots and lots of love to all and don't any of you dare stop sharing your good news! It is lovely to hear. After this I'm going to draw this thread to a close and move myself on to the carers forum (will link from here). Shouldn't have camped on your patients forum in the first place, but hope some of the info about this part of the journey has helped and send all beginning this fight, and those fighting on, the very best of vibes for the very best outcomes.

I bought 2 tickets for the Suggs and friends do. We can't go, so if you know of someone who deserves a bloody good free night out let sarah-jane@pancreaticcancer.org.uk know. She may have deserving folk in mind already, but if you get in quick you never know!

Sarah
XXX

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: A New Chapter

Postby sandraW » Wed Mar 19, 2014 9:34 pm

So sorry its not better news for you and your Mum, but that's the nature of the beast,its just so frightening and frustrating, you are such a help and inspiration Sarah, to us all,
love to you and your Mum take care sandrax

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

Re: A New Chapter

Postby nikkis » Wed Mar 19, 2014 10:28 pm

Dearest Sarah,

I was thinking earlier that at the start of last year, so few of us had any idea of the nigthmare that lay ahead, and I personally could not have begun to imagine that I would have survived the relentless emotional and physical battle that this has been. We all carry on, no matter what this throws at us, somehow. So thankful for the love of our families and friends and for the wonderful support we get here.

You and your mum are such strong people, whatever you decide to do will be the right decision, that you will both feel comfortable with.

Sending lots of love to you both,

Nikki

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: A New Chapter

Postby EmmaR » Wed Mar 19, 2014 10:49 pm

Just sending best wishes and love to you both and hope you can enjoy some lovely moments together.

Emma xx