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So far so good!


Slewis7313
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Carole McGregor

Steve


I'm soooo pleased you've been given this chance and wish you all the very best for the weeks ahead. You are so right to pursue this. We all know that the options available in the UK are limited. If I had known then what I know now, I would have pushed Clive to do the same when he was first diagnosed.


Someone has to beat this bloody disease and my money is on you !


Love

Carole

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Hi Steve


Spot on about all the carers on here who give such great support to their loved ones and to each other.


Very best wishes for your treatment in Heidelberg and a full and speedy recovery from this major operation. We are all routing for you so go get 'em.


Love and Peace


Mike


PS Had a few of those tearful moments myself reading of how the carers are coping with their situations and, sadly, their losses to this bastard illness.

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Hi Steve


Fantastic. I will be looking out for your updates, hopefully we can have a gobbledygook one - looking forward to it.


Go get the bastard!!


Yabadabadoooo!!!... Julia would say were she not in Lanzarote


Cathy


Xxx

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Hi Steve,

I am thinking about you every minute, reading about your experiences and the way you have dealt with each situation, you are an inspiration and fill me with so much hope. You are making others brave.

Wishing you and your family the very best.

Love Kathy

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Thinking of you and your family Steve. Wonderful news and I know you can only go from strength to strength. Will be thinking of you every single step of the way. Take care my friend.


Linda x

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PCUK Nurse Jeni

Echoes of all the sentiments so far on here Steve.


From all of us here on the Support Team, Live Chat , charity in general, the very best to you and yours.


Will be thinking of you on Wednesday.


Kind regards,


Jeni.

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  • 1 month later...

Hi Steve,


Wondering if you would be able to go offline and let me know who to speak to and send disks to in Heidelberg (moderators have my addy). I know you've posted on that before, but can't find it. Want to have a second surgical opinion, specifically from somewhere that can handle and does lots of arterial/general vessel resection. Mr B and co seemed like the best bet.


Sarah

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Sarah, this is the Doctor I had initial discussions with. He was very helpful and supplied his address to send the CT scans to. Not sure how much I should put on here, but the information below is readily available on their web site.



Dr. Reinhard Singer

Oberarzt

Chirurgische Universitätsklinik

69120 Heidelberg

Tel 06221 5636444

Fax 06221 565075

Reinhard.singer@med.uni-heidelberg.de


For general enquiries, the best contact is Frau Bornschlegl in the International Department:

Simone.Bornschlegl@med.uni-heidelberg.de


Hope this is of use!


Steve

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Fabulous service! If only all our docs were that incisive and prompt!


Ta muchly.


I'm hoping that your post surgical recovery is going ok and that you manage to put the C word out of your head for the majority of the chrissy hols.


Sarah

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  • 2 weeks later...

Now the Heidelberg experience is behind me, it is time to look again to the future. Before the failed Whipples, I had been accepted as a potential candidate for both Cyberknife and Nanoknife. I had also come back with some recommendations from the team in Heidelberg and recently undergone another CT scan and blood test here in Swansea. The Germans also gave me a leaving present in the form of chronic diarrhoea which we are still trying to sort out! My GP is now thinking this may be C-Diff or possibly Ecoli and I await the results of her latest tests. So... the meeting with my Oncologist and Specialist Nurse on Thursday had the potential to be a long one and possibly a little contentious! It turned out to be a long meeting, but in no way contentious with my Oncologist remaining supportive in everything we discussed....... so here goes:


We started with the operation and concern for me from my Oncologist that it was not successful and that I may have been burdened with a large bill. We reassured her that the operation simply had to be attempted, it has not diminished our spirit or determination and we are lucky enough to have costs covered by my insurance.


Moving on, the recent scan showed no change in the size of my tumour, though I do have a small amount of what appears to be fluid retention which is in all probably as a result of the surgery. It is small and we need to keep an eye on it, but is unlikely to be anything sinister. My bloods showed an elevated CA19-9 of 69, compared to 49 in Germany and 10 previously. It is still low with both Germany and UK putting this down to poking and prodding done during the operation.


The German Oncologist was somewhat surprised that my tumour was stable after 4 months of no treatment. They suggested that this MIGHT indicate a less aggressive Endocrine tumour and did some blood tests to see if this was a possibility. The associated markers were elevated, but only marginally. They did however suggest this could be investigated further. My Oncologist agreed in principle with these comments, but said they had already considered this. Apparently the tumour can be exocrine, but tests may still show some low level endocrine activity. The tests done with regards to my condition and my almost immediate, positive response to GemCap indicate that we are dealing with an exocrine tumour. My biopsies have been inconclusive and Heidelberg suggest that a PET scan might help. My Oncologist would struggle to justify a PET scan for my current/specific condition, but was pleased to see that the Cyberknife Clinic has requested such a scan which means I can probably get it funded through my Insurance.


Heidelberg also suggested that we do not simply monitor the tumour before giving any more chemo, but keep hitting it periodically to keep it at bay. My Oncologist again understood the argument and we went over my case history. GemCap, based on the SCALOP trial was considered the correct treatment for me at diagnosis as I met the criteria 100% and it certainly had the desired effect with early improvement in my condition. (I wasn’t in a position to argue at that time as I was totally clueless regarding chemo and wanted anything that would help). The study was relatively new and as such little follow on treatment data is available. It transpires I am her only PC patient in this situation, as she either sees patients for post-surgery Chemo or are so far advanced that options are limited. We are therefore breaking new ground together and she feels that based on my current well-being, continuing without treatment for now is the best option for me. She also mentioned that the body builds up immunity to the drugs, which we need to avoid for as long as possible. However, if I was really uncomfortable with this, she would put me onto Folfirinox now. She also suggested (without prompting) Abraxene if I could arrange funding! GemCap is no longer appropriate as it was prescribed only as part of the initial SCALOP recommendations.


CyberKnife and Nanoknife then came up. She is concerned (though not totally dismissive) about Nanoknife as there is no clinical data to show how effective it is, but she was positive about CyberKnife. As I have already been accepted for both, she felt it makes sense to move forward with CyberKnife which will also include having a PET scan. I will however still be looking into NanoKnife and see which seems the logical next step after consultations.


Finally, good old Clexane. My Oncologist said that she will speak to the Haematologist about me coming off totally and she will look into the ‘new’ drug. The concern is that Heparin (Clexane) has such a good track record with cancer patients, she is a little reluctant to move away from it. Again, she will check it out and get back to me.


So... all very positive and the agreed way forward is to hold fire with chemo until we have investigated CyberKnife and NanoKnife. I will use the CyberKnife request for a PET scan to try and swing this with my insurance as the very first step. Once (if) I have had one of these procedures, we will review the whole shooting match to include possibly restarting chemo based on my condition and the outcome of the procedure.


Top of the list is however to enjoy Christmas (something we were unable to do last year as we were all doing the ‘rabbits in the headlights’ thing at that time). We hope you are able to have some semblence of a normalish Xmas (as far as PC allows). For those of you who will be without a loved one for a first Christmas, I simply do not know what I can say other than to thank you from your wider forum family for sticking with us...you will remain in our thoughts over the festive period.


Steve & family

x

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Well Steve it really is looking positive for you in the future with a few options to think about, so, so pleased for you.


I would just add a caution re Abraxane. Our oncologist queried it for us ie we would pay for the Abraxane and NHS would fund the Gem. Unfortunately, the Local Health Authority, or whatever the body is, refused us going down this route, the argument being that Joe Bloggs may have been having treatment sat next to Ray and been wondering why he was having a drug that he, Joe Bloggs couldn't due to lack of personal funds. Personally I don't 'get' this argument, I mean its life isn't it? For instance, you are lucky enough to have great health insurance where the next person may not, and good luck to you. We are not in little boxes and we're not made of ticky tacky, unfortunately life isn't always fair and equitable as we all know here! It does anger me but what can you do, except move house which is hardly an option!!!


Anyway, enough of that its onwards and upwards for you. Have a great Christmas, you really deserve it.


Julia x

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Thanks both, I obviously have a few things to juggle going forward but they are all pretty positive. I'll also have the odd bridge to cross when I get to it, but we'll just have to see where we go. I'll keep you all posted.


Steve

X

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Steve


You really are the Special Air Services in the fight against PC! I'm afraid I rank somewhere in signals and logistics!! Keep it up and good luck.


Love and Peace


Mike

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Just a quick update on the diarrhoea issue. My GP just phoned (18:30) to say my stool sample was totally clear so the problem is more likely to be related to the surgery itself. She has suggested I speak to the local surgical team for advice which I will request through my Specialist Nurse. The fluid build up shown on my recent CT scan along with a problem with excessive (milky) drain fluids before leaving Hospital may be trying to tell me something. Looks like I may revert to the low fat diet the Hospital used to reduce the drainage until this is resolved.


We shall see!


Steve

X

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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

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  • 4 weeks later...

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

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