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

Moderator: volmod

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

Re: So far so good!

Postby J_T » Wed Aug 21, 2013 8:46 pm

Darn it Steve! What a damn shame. You are so stoical, you are an inspiration.

Keep flexing those muscles! ;-)

Julia x

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

Re: So far so good!

Postby InfoForMum » Wed Aug 21, 2013 11:12 pm

Steve,

You recently commented on one of my posts, so thought I'd have a look at your story. I'm fighting on my Mum's behalf, so understanding more about the journey we're starting on is good. What stands out is your incredible determination. I hope I can I can support my Mum to stay the course, whatever that may be, half as well as you. Good luck with everything and sending fighting vibes.

Sarah

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

Re: So far so good!

Postby InfoForMum » Sat Sep 07, 2013 11:46 am

Hi Steve, I'm back and the 2 weeks since my last post seems more like 2 years. I now have a far deeper understanding and respect for where you are. Appart from size of tumour (18mm on diagnosis)and involvement of vessels (veins plus 1 hepatic artery branch), there is not much difference in your and my Mum's diagnosis. When 15mm right or left and 15mm bigger or smaller can make this much difference it makes you wonder at the world doesn't it.

I'm not sure how you are doing now. Whether Nanoknife was persued, how you're generally fairing. Hope the answer is mostly good.

Sarah
XX

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

Re: So far so good!

Postby Slewis7313 » Sun Sep 08, 2013 8:43 pm

Hi Sarah, just got back from a night away with friends and seen your update. I have updated my real life story, but basically am doing really well at the moment, with no symptoms and no treatment. However, the tumour as you may have seen is still there and continues to be a challenge for the surgeons. As you say, the learning curve is unbelievable and we all become experts very quickly. I am putting together scan results and reports to send off to cyberknife and nanoknife experts as well as Heidelberg University Hospital (the latter as a second opinion, though I will be surprised if they agree to consider surgery, but who knows eh?). My tumour has obviously been given a serious push back with chemo and radiotherapy, so I feel I now have a little time to look at my options without rushing into anything.

Take c and good luck!

Steve

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

Re: So far so good!

Postby Slewis7313 » Wed Oct 02, 2013 9:21 am

In my last post, I used the statement 'but who knows' with regards to Heidelberg.......... Well knock me down with a feather, I received an email yesterday morning confirming I could have CyberKnife treatment at the London Clinic, followed shortly by an email from Heidelberg saying they were happy to go ahead with the operation after the shrinkage brought about by radiotherapy! Last night was a bit of a haze, but the only way is Heidelberg so I am working on getting that sorted as soon as possible. My Company's Private Health Insurance does not normally cover procedures outside the UK, bit as it is not available in the UK, they are reviewing policy. On top of all that, my Company are sending me to Cyprus on 12th October for a few days business, so I am taking Margaret along and extending a few days. As it is a business trip, the Company travel Insurance covers all illnesses, including pre-existing cancers!

I know many of you are going through very difficult times at the moment when I seem to be 'on the up' (for now anyway), but you are never far from my thoughts and I certainly hope some of my current luck rubs off!

Take care all

Steve
X

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

Re: So far so good!

Postby InfoForMum » Wed Oct 02, 2013 9:54 am

Fanbloodytabulous news Steve!!! So, so pleased for you. With the cyberknife as backup, hol in the offing and (fingers crossed) an insurer working to make Heidlberg happen feels like most of the luck you're owed landed at once. Well I say luck, but you've grafted for this haven't you.

One thing I saw last night I'm wondering if you know more about. Have seen a few US posts where nanoknife was on standby to be done during the whipple IF when surgery attempted any unexpected surprises show up. A Dr Martin was mentioned (sorry can't find posts now)

Wishing you a smooth as possible path to taking advantage of all this and have a marvellous break.

Sarah (sitting with a good big grin now)
Last edited by InfoForMum on Wed Oct 02, 2013 10:05 am, edited 2 times in total.

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

Re: So far so good!

Postby Slewis7313 » Wed Oct 02, 2013 10:04 am

Thanks Sarah, that is a good call regarding Nanoknife so I'll mention it to them. They have said it all hinges on what they find when they go in, so a backup might be useful just in case (we have to be practical). All a bit scarey, but for all the right reasons,

Steve
X

Sones
Posts: 108
Joined: Tue Aug 21, 2012 7:31 pm

Re: So far so good!

Postby Sones » Wed Oct 02, 2013 10:28 am

Steve this is excellent news, so good to hear. x

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: So far so good!

Postby belgrade » Wed Oct 02, 2013 11:54 am

This is wonderful news Steve, I am so pleased for you and your family. All good news seems like a victory against this awful disease. Have a lovely trip!
Hilary

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: So far so good!

Postby KATB » Wed Oct 02, 2013 1:42 pm

Lovely to hear some positive news and don't feel bad about posting it - we want and need to hear for it.

You go for it!

K
x

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

Re: So far so good!

Postby Slewis7313 » Wed Oct 02, 2013 3:13 pm

And one more..... Professor Secretary has just emailed me to say I am also suitable for NanoKnife. I certainly have more option than 48 hours ago!

Steve
X

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

Re: So far so good!

Postby InfoForMum » Wed Oct 02, 2013 3:24 pm

Cup runnething over for a change - fab!

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

Re: So far so good!

Postby J_T » Wed Oct 02, 2013 4:10 pm

Wow! What amazing news Steve! So, so pleased for you and your family.

A yabbadabbadoo moment I think!!!!!!!!!!

Kick ass!

Julia x

Birchen
Posts: 77
Joined: Thu Sep 05, 2013 1:53 pm

Re: So far so good!

Postby Birchen » Wed Oct 02, 2013 5:54 pm

Hello Steve
So glad to hear your brilliant news. I to have emailed Heidelberg as my husband Terry has a tumour in the tail with spreads to the liver. All his tumours have shrank after 3 x 3 lots of gemcitabine and capecitabine otherthan 2 on the liver which have grown a little in size.
Heidelberg have said that it we forward over the latest CT scan they will take a look and let us know costs etc as they say he would need a three week stay. We to have private health care but not sure whether it will cover treatment in another country so any info you have on this would be appreciated.
good luck Lyn

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: So far so good!

Postby karen17 » Wed Oct 02, 2013 6:35 pm

Steve I am so pleased for you and your family. I have also read research suggesting that nanoknife is well placed to be used during the whipples so do ask. Cant think where I saw it though!
Good luck
Karen xx