Recently diagnosed!

[Sueba]

Hi again Paul,

If you're still struggling with your hospital sending the DVD why not give the ...(edited-moderator) a ring and ask if they can download the scans from the radiologist data, mick has emailed the dr there his date of birth,gp,address of gp surgery and he is going to try and download it.weve not heard back from him yet so may still have to get the hospital to post it.Like you we don't know if mick will be suitable as the original surgeon said he didn't think it would ever be operable but we are prepared to try this avenue too!

Hope your days been ok,we've been to the hospital for a blood test (1 hour drive each way!)and are going back tomorrow for 7am for a biopsy as last weeks "sweepings"we're inconclusive.I am working on staying positive at the moment as it keeps me going!

Love

Sue x

[susikus]

Hallo Sue, another Sue here. I will be very interested to hear how you get on with your nanoknife enquiries. We had started investigating but it was too late. One thing I did learn, that I now feel must be more widely known, is that nanoknife is incompatible with metal stents. And metal stents are the standard in this country as they work well with chemotherapy. And they are so much the norm that you are not even consulted. My husband had two stents, one in the duodenum that was inserted not long after diagnosis and another in his common bile duct. We had an appointment and wanted to ask about replacement with a view to nanoknife when he became very ill and died in the space of about 36 hours. So please be aware before any possibility of stenting being needed. I wish you both all the love and luck in the world.

Sue

xxx

[PCUK Nurse Jeni]

Thanks Susikis and Sue.

It is very interesting hearing all the information on Nano-Knife. Sueba is right in that a lot of scans can be sent electronically now, provided the receiving end has the same equipment. It makes things a lot easier, and is safer in terms of data protection etc...

Just one comment on stents - metal stents are usually used when there is no possibility of surgery ie: with metastatic disease, whereas plastic stents are usually used as a stop gap before surgery. You may also find that plastic stents are used regardless, but may need changing at some point. Depends on the local practice. Metal stents are better if a person is having chemo as there is less chance of them getting blocked/infected. However, it can still happen.

Kind regards,

Jeni.

[DRAD3]

Don't think metal stents standard everywhere - Gary had plastic stent in the bile duct with a view to fitting a metal one only if the plastic one became a problem, which never happened. It is definitely worth asking though, if the type of stent later effects decisions about treatment options. We are in the Birmingham area, so perhaps it depends where you are.

Deb

x

[Sueba]

Hi

Thanks for the discussion on nano knife.yes my husband has a metal stent in which was put in 2 weeks ago a week after diagnosis to relieve his jaundice and because he is classed as inoperable,which I think is the norm here. We have had an email back from the hospital to say they have looked at the scans(they downloaded them off the system) and he may need a further scan.Mick has emailed them back to say he is in hospital recovering from today's biopsy and that he is set to start chemo next thurs/Friday and that he has a metal stent fitted.So we shall wait for a reply........

Thanks sue for your reply my heart goes out to you,thankyou for having the compassion to try and help someone else!

Big hugs

Sue

Xxx

[susikus]

This is a wonderful community because we are all facing an awful disease, that many others just do not understand. Together we will achieve more and support each other, whatever happens. Good luck Sue, I shall be very interested to hear, xxx

[marie souter]

Hi all,

Sue I just popped on to read your thread, I'm surprised I haven't read it by now as am posting a lot these last few wks ... (although I have been actively posting since June I think)...

How are you all doing now? He sounds super-fit ordinarily .. I was out of puff just reading his fitness regime, I am sure this will certainly help his stamina in fighting this bloody awful disease .. my thread is called 'tired' unfortunately my moms diagnosis came at stage 4 and she refused chemo, but she still managed 8 mths 1 week till she passed. She was tired all the time and had very little staying power all her life but she managed to fight this disease as hard and as long as she could and I was amazed at her determination.

I saw your husband got a metal stent, thats amazing they normally don't fit those but thats such a good thing as they last so much longer

Susikus is so right that people do not understand this awful cancer. The support on this forum is amazing and although my mom has passed I just can't bring myself to leave people floundering if I can help with a kind word..although my sister says it isn't doing me any good being on here..she has no idea how much it helps. Yes its sad there are so many gone these last few mths BUT the support on here is out of this world and no one understands like us, you can probably see how much I have been posting since my mom passed...how can you close your eyes to the suffering this disease causes just because your loved one has passed. I'm campaigning like many others for more awareness of this disease and raising funds...

still gotta keep fighting the good fight

Love and hugz

Marie

xx

[Sueba]

Hi Marie

Sorry I don't think you've read my up to date post on here.....

He passed away 4 weeks ago,still super fit etc suddenly,with a massive oesophageal bleed,cause still unknown till we get histology back.

Miss him so much,but I've 3 sons I promised him I would look after so that's what I'm doing

I've sent you a Facebook friends request

Sue

X

[marie souter]

oh no Sue am so sorry that woulda been around the same time as my mom then maybe a week after my mom and thats probably why I didnt see it when I posted this .. but I saw on your facebook page, what a lovely couple you two made btw, am sure he woulda been proud of everything you are doing, and those boys are a credit to you, his legacy x

am thinking of getting moms histology back as well am not happy with a few things xx Let me know how it turns out with that....thinking of you

Love and hugz

Marie