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

Re: So far so good!

Postby InfoForMum » Mon Dec 16, 2013 9:17 pm

Hi Steve,

Love your comprehensive posts, unlike my neverending ones they're so full of good detail. Your consultant sounds up for the fight with you and giving honest considered opinions as you both march into the unknown, again! The crack from Mike about the SAS is about right. You need the nerve to quell the fear, focus the mind and drill down to the pure facts and available evidence while also keeping in mind everything else in your life that pivots round what's happening with the nasty disease.

Sounds like a well thought out plan and as always will keep eagle eye out for next steps. You might have spotted on Mark's thread, both he and my Mum are now scheduled for Nanoknife same day. How's that for a co-incidence! Not sure if it's best for Mum to go first so he's fresh or best for her to go later so he's warmed up and has another PC procedure under his belt :-)

So looks like we're all focussing on family for christmas and a new concerted offensive manouvre soon after New Year.

Take care and hope the stomach issues get gone really soon.

Sarah
XXX

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

Re: So far so good!

Postby Slewis7313 » Mon Jan 13, 2014 12:15 pm

So.... Time to get this show back on the road! I have made a good recovery from surgery in Heidelberg, though do have of an issue with damned diarrhea, but not by any means a show stopper. I am seeing the local Surgeon on Tuesday 21st to review progress. I hope to be able to pin him down regarding Cyberknife and Nanoknife, both of whom have agreed I am still a candidate. The surgeon was not at all keen on Nanoknife last time I brought it up, but simply because there is no clinical evidence of success. We here have however seen in the main a good response from those who have gone down this road, so it is still my preferred option (especially as I have already had a good dose of radiotherapy which shrunk the thing from 3 to 2.2cm). Looks like London is beckoning in the next few weeks!

I'll keep you posted.

Steve
X

littlesister
Posts: 86
Joined: Fri Jun 22, 2012 3:18 pm

Re: So far so good!

Postby littlesister » Mon Jan 13, 2014 4:50 pm

Very good luck
Judi

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

Re: So far so good!

Postby EmmaR » Mon Jan 13, 2014 6:20 pm

Steve I wish you all the luck in the world in what ever the next step in your journey to try and find a cure for the bugger !! will take you .
EmmaR x

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

Re: So far so good!

Postby J_T » Mon Jan 13, 2014 7:09 pm

Hope you have a successful meeting Steve, and Nanoknife is a fast follow up!

Keep us informed.

Julia x

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

Re: So far so good!

Postby InfoForMum » Mon Jan 13, 2014 8:48 pm

Very best of luck Steve and don't take my Mum's experience with found surprises and recovery as typical. You're another research demon, so sure you won't. Prof was back today confirming he had to restrict his attack to the area around the SMA cos of the damned cyst, but with the size of your tumour he could have a damn good crack at it with great overall coverage. So my advice(with usual caveat it's not remotely medical or expert) go for it soon as you can.

Take great care of yourself.

Sarah

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

Re: So far so good!

Postby Slewis7313 » Sat Jan 25, 2014 11:04 am

Well, the meeting got off to a slow start as we met soemone new from the surgical team. He knew something about my history, but after 15 minutes of discussing why I had diarrhoea we were getting nowhere. We discussed Creon, blocked bile duct(??!!) and immodium. We were getting frustrated and Paige (Daughter) simply stated that I was fine before surgery and have had the problem ever since the operation. The gentlemen then decided to go and discuss it with his boss. At this point we were in agreement that I would make a private appointment to see the senior surgeon as we were still getting nowhere. But, lo and behold, the aforemention surgeon entered the room, greeted us and asked how I was and if my hernia was still OK!

He started by saying that he fully understood and respected my reasons for going to Germany and that whatever course my treatment took, he would support me. He had unfortunatley not discussed my case with the Oncologist since I met her in December. He immediately stated that my diarrhoea is obviously due to damaged nerves during surgery and that it can take a long time for the body to recover and that there was a chance it could be permanent. I was happy with the response as I now understand the cause and can concentrate on other things.

We confimred the tests in Germany and scan in November all indicate no change and no spread which is great news. We then talked about Cyberknife and Nanoknife. He checked my biopsy result from December 2012 and confirmed no malignant cells were found. Whilst being careful not to try and raise any hopes, he suggested that this is obviously not an agressive tumour (so far) and that by 'using all our guns' now, we might limit what can be done when (if) the thing does become more aggressive. The bottom line was that he beleives neither of the suggested procedures (Cyber/Nano) would do me any good at this time and with my stable situation. He did however also state that he would support me regardless of what I choose to do which is reassuring. This actually reflects what the Oncologist said in December even though they do not appear to have discussed my situation in the meantime. He has agreed to review my case with the Oncologist and wanted to have another consulation after the next CT scan (March / April). Whilst this is all good news, we don't really want to wait 2 months, so will continue with the private PET scan as soon as possible. I have also aksed for another tumour marker test as it was little elevated (69) last time. Once we have these activities done (and he should have discussed with the Oncologist), I will request a private consultation with him again and see where we go from there.

All pretty good stuff for now. I think I am still reaping the benefits of my GP's very quick referall at the start of this thing.

Take care all

Steve
X

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

Re: So far so good!

Postby Cathy » Sat Jan 25, 2014 11:59 am

Hi Steve

Your plan of action sounds good.

I used to talk to Jonathan about your story..when there was so much other bad news on here (which I didn't share with him) he liked to hear of your updates. He always remembered the time you "spoke" on the live discussion when he typed something about massages (palmers cocoa butter - chocolate scented) immediately before the thing crashed.

As we say, keep on keeping on. We're right behind you!

Cathy xx

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

Re: So far so good!

Postby cestrian » Sat Jan 25, 2014 12:04 pm

Hi Steve

A very informative and useful post, particularly for me as I am still shilly-shallying over the nano-knife not least because of the lesions in my liver and lung and the fact that I am still feeling pretty well most of the time. I've decided to await the results of the CT scan due early February and make a decision then as we will have more up to date information to work with especially with regard to the little rogue in my lung that had increased in size at the last scan mid November.

Very best of luck with your own treatment whatever decisions you take and sorry to hear that your aborted operation in Germany has given you a residual problem - I do hope that it does clear up and is not permanent though Loperamide is usually a great help.

Love and Peace

Mike

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

Re: So far so good!

Postby EmmaR » Sat Jan 25, 2014 3:45 pm

Well Steve ,
They say perseverance pays off and gets you what you want so good luck for what ever your perseverance and determination brings you .
EmmaR x

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

Re: So far so good!

Postby Slewis7313 » Wed Feb 05, 2014 5:39 pm

With me moving forward at a tentative pace for now, I had not really given much thought to my requests for CT scan copies, but they arrived today....3 weeks after requested. Not overly concerned with the time as I am not rushing into anything at the moment. Unexpectedly, all my paper records were also included going back to the last such request in the middle of last year. I was so pleased to see several documents relating to my last Oncologist appointment in December. In that meeting, the Oncologist made a number of commitments to chase my change from Clexane, and supporting me with other treatments including CyberKnife and Abraxane. Well she has acted on every single one of them with a letter to the senior Hematologist about the Clexane replacement (not sure if she has an answer yet though). She also wrote to the senior surgeon and my GP confirming I am looking at Cyberknife (she, probably for diplomatic reasons did not mention Nanoknife!) and would need a PET scan (though done privately). She also said the tumour is stable, but if it becomes active again I would be treated with Folforinox or privately funded Abraxane/Gemcitabine. Nothing has really changed, but it is so reassuring to see that she is true to her word and will support me regardless of the treatment options I may choose...... Really perked me up to read this lot today,

Steve
X

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

Re: So far so good!

Postby cestrian » Wed Feb 05, 2014 8:26 pm

Hi Steve

That is brilliant and must have been really reassuring to know that she's walking the walk! Very encouraging for you. Take care and good luck. Move from Clexane would be a boon, I'm on Tinzaparin injections and it's not really a problem but capsules would just be so much easier

Love and Peace

Mike

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

Re: So far so good!

Postby J_T » Thu Feb 06, 2014 10:54 am

Great news Steve, hope you keeping well. How handy to get your notes! I sent for Ray's following his death, just to help me get my head round stuff. Have had GP notes just waiting for hospital records.

Hope you're still feeling perky! :D

Julia x

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

Re: So far so good!

Postby EmmaR » Thu Feb 06, 2014 4:15 pm

Brilliant news Steve I told you perseverance pays off .

Take care
EmmaR x

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

Re: So far so good!

Postby InfoForMum » Thu Feb 06, 2014 9:42 pm

Hi there, totally get your perked upness. We all so so need someone in the profession firmly in our corner and willing to help you look into things outside their own specialism and experience. One of the reasons my Mum and I volunteered to have some of her experiences published on the Saatchi Bill blog (will keep you posted bout that).

I know there are sites out there where you can rate your doctor. Perhaps a review is warranted - if those more apathetic or actively resistant to examining all options see there's a benefit to doing so perhaps it will, in some small way, kick others up the arse to do the same.

Perhaps a campaign to do so amongst the PC family would be a good idea? Not to trash those who fail us, just to heap praise on those who don't and at the same time provide a resource for those searching for good doctors?

Great overall to hear from you and hear you sounding so positive :-)

Sarah
XXX