Devastated

[charney]

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]

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]

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]

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]

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]

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/viewtopic.php?f=28&t=1030&start=30#p10470. There are some links to recent research in this one.

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=28&t=1168&start=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/viewtopic.php?f=3&t=1192&start=15#p10222

Take care

Sarah

[Cathy]

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]

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]

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]

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]

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]

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]

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]

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]

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

[laura]

hello cheryl, did leave a message to you on another thread, hadn't seen this thread then.

so so very sorry to have you back on here as a carer again, this time so much closer.

you must both be whirling with shock, that will settle down, honestly, thats when the fighting gloves go on and you both stay positive and fight.

so difficult for either of you not to have memories of MIL right in your face, you know that each case is differant and theres NO REASON that your hubbys wont also be differant.

sending you both lots of love, positive vibes, and strength strength and more strength.

bri is doing v good, hugs cheryl, laura xxx

[charney]

Hi Laura

nice to hear that Bri is doing so well, he gives us all hope. yes shock is

an understatement at the moment and as you say all so fresh with Audrey. Steve

is as I have said still very low but is at work, he suffers with pain and bloating

at the moment, not too bad in the day but seems to be worse at night. Hopefully

those boxing gloves will come out soon.

love and best wishes

Cheryl

x

[Charney22]

we'll spent most of today at a & e. Steve now has a dvt in his

Calf and has been put on claxane injections. the radiologist said that this would

Stop chemo starting has anyone experienced this. Mind you we are still waiting for

An oncology appointment. We were told we would receive a letter, we haven't yet , told

An oncologist would ring, not a word, maybe Xmas hadn't helped but think they will

Be getting a call soon. Certainly didn't help when we booked in at a & e and were informed

That according to their computer system Steve was still an inpatient on a ward and had

Been since 11th dec. this was the day he had his biopsy and he was only on ward a few hours

Slightly worrying

not sure what 2014 has in store but I send all my best wishes to everyone on this forum

cheryl xxx

[J_T]

Cheryl, I would get on to PALS straight away. Who is running that hospital? Words fail me.

With regard to DVT. Ray had bi-lateral DVTs, ie in both legs, he was having his chemotherapy a few days later so I don't see why it should stop Steve's treatment. In fact quite a few people on here have DVTs, its quite common in PC and as far as I know it hasn't stopped anyone's treatment.

HNY

Juliax

[Cathy]

Hi Cheryl

My partner had a blood clot in a vein in his arm earlier in 2013 and started on clexane. This didn't stop chemo.

However, more recently he has had clots in arteries in his leg and needed ops (2 of them) to remove the clots which were quite big operations. He needed ops as clots had stopped blood supply and could have meant he would lose his leg. This HAS stopped the chemo until the op wound heals and as they felt that restarting chemo so soon might cause another clot.

It might be worth your asking for a 2nd opinion if the clot was in a vein. I think it's quite unusual to need to stop chemo for that.

Cathy xx

[cestrian]

Hi Cheryl

I have droned on about the pain relief operation that I had last June ad nauseam but I do thoroughly recommend that if Steve is well enough and is suffering severe abdominal and back pain that you ask about this. I do put my own good progress down to being pain free as constant pain or the use of morphine or other drugs can be quite debilitating. My own procedure was done via Key Hole surgery but I believe that this is only available in certain areas but still worth pursuing for the benefits it bestows.

I also had a clot but on my lung and this did not interrupt my treatment at all and I still have to have daily injections of Tanzeparin to thin my blood as PC and Chemo can cause clotting.

Good Luck and may your God go with you

Love and Peace

Mike

[PCUK Nurse Jeni]

Well done to all the forum family again!

You are all correct - a DVT should not stop treatment starting (chemotherapy). As long as there has been treatment started for the clot, then chemo should be able to go ahead no problem. As others have said here, many people with pancreatic cancer get clots of some sort, and are put on injections usually, as this is the most efficient way to treat them when you are on chemo. It is not a good idea to have warfarin as this interacts with almost everything else you can think of, especially chemo, hence the injections.

Jeni.

[Charney22]

Hi all

thankyou for your replies, puts my mind at rest,

as to when his chemo will start is anyones guess at the

moment, I will be contacting our consultant secretary today

to find out what is happening. thanks mike for your comment

on the nerve op, our consultant did mention this to steve as an

option so steve is going to ask about it when we finally get

our appointment.

Cheryl xxxxxxxxx

[cestrian]

Hi Cheryl

Cannot recommend it highly enough,particularly if Steve can get it done as a key hole procedure as I did. It just made such an amazing improvement to my quality of life as I was able to come off all pain relief almost immediately. I had no problems at all and the abdominal and back pain was halted in its tracks! Bilateral thoracic splanchnicectomy as far as I can decipher on my consent form! Done under general anaesthetic but as day surgery so I was not kept in overnight though have sometimes wondered if that might have been no bad thing. I think you do have to realise this is real surgery even though nothing like the more serious operations some undergo.Each lung is collapsed in turn to allow access and then reflated so only a couple or three minor insertions on the back. I had this on a Tuesday followed by liver biopsy on the Friday and then wondered why I was frazzled!!

Love and Peace

Mike

[Charney22]

My lovely husband is hospital . He had the celiac nerve block last Wednesday

Which did absolutely nothing for his pain, in fact his back pain was worse

He had got his chemo appointment date sent, not til end of the month, two months

Almost from diagnosis. His consultant surgeon who performed the block said this

Was not good enough and he would try to move it forward. And oncology would ring

Us 4days passed no one rang. Our gp contacted Steve s oncologist and eventually

They rang for Steve to see him., we went Wednesday this week and he was admitted

There and then. We were told the horrendous news yesterday that the tumor is causing

A bleed in an artery nr the liver, he has been taken off all blood thinning meds. But he also

Has blood clots in his lungs which need these thinners, they cannot treat both problems so

They are not going to treat the clots, and no chemo. Just a case of palliative care to keep

Him out if pain. two months from diagnosis and he hasn't been given a chance to fight

It. If they had rung us before Xmas as we were told and chemo would have

Started beginning if January who knows I feel so let down by the hospital right now , too many hiccups.

cheryl xxxxxx