A forum for advanced pancreatic cancer issues

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charney
Posts: 74
Joined: Wed Mar 14, 2012 2:29 pm

Devastated

Postby charney » Fri Dec 06, 2013 5:43 pm

Hi I can't believe I'm posting this, after losing my mother in law
To this disease over a year ago my husband 54 has been diagnosed
Today . We are numb and just in total shock. Hunting the internet
Fir options it is inoperable and after reading David s post re nano knife
Would like to know more
Cheryl

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

Re: Devastated

Postby J_T » Fri Dec 06, 2013 6:04 pm

Hello Cheryl and welcome to the forum.

So sorry you have this news about your husband. The specialist nurses on here can be contacted by telephone or email through the day and have a wealth of information.

Lots of people on the forum are also well informed and are here to advise and listen.

Do you have children? As your mother in law also had the same diagnosis it might worth contacting the Europac Study Co-ordinator to see if they are suitable for screening.

http://www.europac-org.eu/

Julia x

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

Re: Devastated

Postby Slewis7313 » Fri Dec 06, 2013 6:13 pm

Hi Cheryl, sorry to hear about your Husband's diagnosis. As Julia states, you can get solid information from the support nurses and others on this forum.

Do you have any specific questions we might be able to help with now? If you can post them, you will no doubt receive responses quite quickly. There is a wealth of experience on this forum, so fire away!

Good luck to you both.

Steve

charney
Posts: 74
Joined: Wed Mar 14, 2012 2:29 pm

Re: Devastated

Postby charney » Fri Dec 06, 2013 6:20 pm

Thank you for your posts, I know just how much support
This forum gives From the time with my mother in law
It is one amazing site, I will certainly need all your support we are just so shocked at the
Moment. Julie yes we have kids and they are being tested for genes by Steve s
Consultant as Steve s grandad dies from this as well
Thank you for your replies xxx

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

Re: Devastated

Postby nikkis » Fri Dec 06, 2013 6:32 pm

Hi Cheryl,
I see from your previous posts that your family has already been through a tough time when your mother in law was diagnosed, so to find your husband also has this bugger of a disease must be virtually unbearable. I have no experience myself of nano knife, but using it to help the chemo penetrate the tumour does seem to make sense.

Just wanted to say hello, and to let you know I am thinking of you both,

Nikki

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

Nanoknife

Postby InfoForMum » Fri Dec 06, 2013 7:49 pm

Hi Cheryl,

No wonder you are in bits. Having helped with this fight once, the prospect of doing it again must be incredibly daunting. No doubt you will find it in you to do it, I'm just sad you have to.

Ref Nanoknife, my Mum is having the treatment on 18th December and I've posted some links relevant. Her situation is different as she's currently classed as borderline resectable, but significant vessel involvement means surgery could be attempted then abandonned or become impossible if she has more spread or mets in the mean time.

Shockingly this is still only available privately in London at a cost of about £400 for a consultation and £13k for the treatment. Something I want to help change. Main posts that may help are:

http://forum.pancreaticcancer.org.uk/vi ... =30#p10470. There are some links to recent research in this one.

http://forum.pancreaticcancer.org.uk/vi ... =75#p10760. There's a link to a very active US cancer forum thread on it in here.

Also David, in a similar situation to you, had it a couple of weeks ago. His posts on it start about here:

http://forum.pancreaticcancer.org.uk/vi ... =15#p10222

Take care

Sarah

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

Re: Devastated

Postby Cathy » Fri Dec 06, 2013 8:12 pm

Hi Cheryl

I don't have any experience of nanoknife I'm afraid but just wanted to say hi and welcome. I empathise with how you must be feeling. My partner, then 56, was diagnosed almost exactly a year ago with advanced PC. For me it was the start of a very steep learning curve. I imagine that having already lost your mother in law and not being a stranger to this forum, will know a lot more. That doesn't mean of course that the journey will be the same, or the options for treatment, or outcome.

Here's hoping that your journey will be a very different one this time.

Lots of love

Cathy xxx

charney
Posts: 74
Joined: Wed Mar 14, 2012 2:29 pm

Re: Devastated

Postby charney » Thu Dec 12, 2013 8:20 am

Steve had a biopsy done yesterday, now waiting for results and
Onc appointment to see what treatment he has. Since yesterday his blood pressure
Has risen, anyone else had this? We see our gp tonight so this is one question we need
To ask. He is going through a very low patch at the moment, not surprisingly , everything is
Just too fresh in his mind from his mum. How do you cope when someone you love very much has
This diagnosis when all you want to do is crack up
Cheryl

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

Re: Devastated

Postby cestrian » Thu Dec 12, 2013 10:01 am

Hi Cheryl

Sincerely hope Steve is able to have surgery after his full diagnosis is confirmed. If not then I think an increasing number of us are looking at the possibilities of Nano-knife but that also won't help everybody. Quite a scandal that with all the positives it is still only available privately. Mind you my cousin has just taken up a non-executive director role in an NHS Trust and when I spoke to him last night he was not so sure about this so is checking it out. I suspect he may be mistaken as I have utmost faith in our diligent researchers on here.

As far as Blood Pressure is concerned mine was just the reverse of Steve's as after several years of hypertension treated latterly by two different tablets each day I found it had dropped to around 120/74 with no medication now being necessary. Just another example of how different we all are I guess. I'm sure cancer team or even your GP will be able to shed more light on why Steve's has risen!

Very best of luck to you both

Love and Peace

Mike

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

Re: Devastated

Postby J_T » Thu Dec 12, 2013 11:39 am

Yes agree with Mike and hope Steve is suitable for surgery. Good luck with your meetings.

It must be especially hard to be diagnosed with this particular cancer having seen another family member go through the process. Tell Steve there are plenty of internet sprites right behind him.

Julia x

charney
Posts: 74
Joined: Wed Mar 14, 2012 2:29 pm

Re: Devastated

Postby charney » Thu Dec 12, 2013 2:04 pm

Thank you for your replies, we have already been told it is
Not operable due to it being wrapped around that dreaded vein and he also
Has liver mets. Cestrian as you say we all have this hope for nano
Knife and how awful we have to pay but at the moment think we are prepared
To try everything going. We don't know what treatment he will be given yet
Consultant did mention the furry fox as David on here calls it, but until dreaded
Meeting we don't know . we will certainly look into nano knife , trouble is at the moment
He is in pain with abdomen and back although it moves around and he can control it with
Co coda mol and tramadol, every pain he has is the cancer getting worse or that's what he thinks
So is feeling very miserable at the moment. We see our gp tonight so will mention
How down he is, can't blame him though. He is usually such a fighter, and is a very fit
54yr old but at the moment this has knocked him for six

Cheryl

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

Re: Devastated

Postby nikkis » Thu Dec 12, 2013 2:38 pm

Hi Cheryl,
So sorry to hear this. My husband, Paul, takes amitriptyline for back pain, which seems to work, but it is also an antidepressant. Not sure that aspect makes any difference to Paul, as he is amazingly upbeat most of the time anyway (I am the one who falls apart regularly) and not sure that anything can lift you when you have had this rubbish news, but it might be worth asking about?
Take care,
Nikki

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

Re: Devastated

Postby J_T » Thu Dec 12, 2013 2:59 pm

Cheryl, I know its early days yet but do contact Macmillan who are superb with pain relief. They will also tell you what benefits you are entitled to (DLA and Blue Badge for example). They will even help you complete the forms.

Our girl was brilliant, we saw her initially and she sorted all the above and then we didn't see her until later on in Ray's illness when she was really wonderful.

Julia x

davidandsam
Posts: 35
Joined: Mon Sep 30, 2013 2:32 pm

Re: Devastated

Postby davidandsam » Thu Dec 12, 2013 4:26 pm

Hi Cheryl

So so sorry to hear about your recent news, it is such a bloody horrible disease and shows little regard for anything!

From what you are saying Steve is a fighter, he is young and he is fit. All three put together will put you both into a strong position once the dust settles. From my side it was the same.

Diagnosed at 50 years old (just!) and as a triathlete it flattened me for several weeks before I could find my game face with the help of Sam my other half and other family and friends (you know this already but your support network is vital !) I also have a big Kahuna in the pancreas and liver mets just to complicate stuff so I am technically inoperable but I still ignore that bit!

Once I saw my oncologist (who is amazing!) the journey ahead became a lot clearer and gave me a strategy for survival. Basically hit the hell out of it with aggressive chemo (furry fox) and then kick it’s backside with “new technology” and then mop it up with more Chemo.

So far the journey has been tough but tolerable I am on cycle 8 of Furry fox and have had the Nanoknife treatment a couple of weeks ago. We are now considering what’s next (hopefully SiRT). The results (very early) look positive as a recent Ultra sound showed a reduction in the size of the PC and the calcification of some of the liver mets. If you want to know more about nanoknife please ask. I am no expert on the procedure side but can give you an honest appraisal from patient experience.

I am sure once you have met with your oncologist Steve’s strategy will be much clearer and in turn that will help you both to plan your attack accordingly, you will I am sure then see the fighter in Steve!

The support from this forum will help a lot I am sure, virtual hugs support and valuable experience at the end of your finger tips and in addition to that you have a vast amount of resource available from the support nurses.

I wish you every ounce of luck for your coming meetings and tell Steve I am rooting for him, a fellow warrior like so many on this Forum!

All the best

David

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Devastated

Postby marie souter » Thu Dec 12, 2013 10:21 pm

Omg Cheryl how terrible ... Having lost my mom to this disease last mth I have said the one thing I couldn't bear having seen the journey from start to finish is to b diagnosed myself ... Truly hope u can have the nanoknife ... He should perhaps discuss changing his pain meds tho .... Heart goes out to you both

Huz
Marie
Xx