So far so good!

[InfoForMum]

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]

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]

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]

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]

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]

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

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[cestrian]

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]

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!

Julia x

[EmmaR]

Brilliant news Steve I told you perseverance pays off .

Take care

EmmaR x

[InfoForMum]

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

[Slewis7313]

What a week! After my perky update earlier in the week, I was interviewed yesterday by the local rag about Abraxane. As a result, a report appeared in the South Wales Evening Post today outlining my situation and the approval of Abraxane for the treatment of Pancreatic Cancer in the UK. I would not have known it had already been published if the Landlord of our local had not shown it to us this evening (OK... It was afternoon). I also today received confirmation that the referral had been processed to allow me to have a private PET scan done, which was great news.

This was obviously all going far too well, with me being brought back down to earth by an email from my Support Nurse confirming that the bloods done on Wednesday showing a rise in CA19-9 from around 60 in November to 526! I called her immediately and confirmed we are both a little concerned about this and she needed to speak to my Oncologist. Bottom line is that I have put the PET scan on hold and will be referred for an urgent NHS CT scan and if there is a need, I will be put onto Abraxane. Whilst they were happy for me to go ahead with the PET scan, they pointed out that it is better in this situation to compare like with like (CT with CT scan). Obviously not good news, but at the least the Abaraxane suggestion came from them without any prompting from me. Just goes to show that with this thing you can never sit back with your feet up and believe all is OK!

I'll keep you all posted

Steve

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[J_T]

Crikey Steve, lets hope that reading is one of those blips that sometimes happen, so good luck with the CT.

Well done on the newspaper article, you'll have to post a link to it when it can be done.

Keep well.

Julia x

[Slewis7313]

Thanks Julia... Fingers crossed!

The paper has not yet put the article on-line, but as soon as they do I'll share it here.

Steve

X

[nikkis]

Rollercoaster is the only way to describe this Steve. As Julia said hopefully that rise is just a blip. Paul has now had 2 abraxane, he seems better on it overall, except for the neuropathy which is far worse than anything he had on folfirinox, but everyone seems surprised at this. So it will be good to hear your experiences of it,

Best wishes,

Nikki

[Slewis7313]

Thanks Nikki, out of interest how is Abraxane administered? Is it in conjunction with Gemcitabine?

Steve

X

[belgrade]

Oh Steve, not good news but hopefully, as Julia suggests, this is just a blip. Keeping everything crossed that all will be well.

Hilary x

[nikkis]

Yes he has it with gemcitabine. His oncologist wanted him to have it every 7 days, but as we have to travel to London for his chemo, we felt this was too much, so paul is having it fortnightly. He is having a scan on Wednesday, and after this and his 3rd dose we are going to decide whether to carry on with the regime, or just have the gemcitabine locally. Another factor will be deciding if he can put up with the neuropathy. Not imagining it's going to be an easy decision, but we are lucky to have options,

Nikki

[cbrooks]

Hi Steve I am from Swansea too, my aunt phoned me tonight to say read the article in the post about someone with pc from Swansea, I immediately thought it must be you. I joined here a couple of weeks ago and have read some of your posts regarding cyberknife/nanoknife. My dad has been diagnosed with pc in November. We are all heartbroken already and our journey is only just beginning. Don't think it helps waiting so long for all of the tests. It will be a four week wait between last team meeting and going for biopsy that he went in to have in December and got sent home. They did ERCP and found a stone that they didn't pick up on ct scan, so removed it and told us that they didn't think there was a tumour there just inflammation caused by the stone, so we all let our guards up a bit (well my mum did) and in Jan meeting after further ct were told that it was a tumour and that it had grown, and now he would need an MRI then biopsy. We saw a different consultant last time who said that mri showed a lesion on the liver as well (I asked when this was first discovered and he replied November) so they would have prob known back then that it was mets and that the biopsy should have gone ahead as it was doubtful it would have been inflammation. Not happy, poor old dad is on warfarin and had to have daily clexane injections a few days before going in, then go onto heparin then back to warfarin before being released and have to go daily to {Hospital name removed - moderator}( thank goodness they live close by) for 2 weeks after for injections/blood tests. so all of this has to happen again before the biopsy to tell what type/stage ( when I know it will be 4b). He is well in himself, as soon as the stone was removed his jaundice went and sickness, he had put on a stone in weight since and is back to 'normal'. Scared now that the biopsy will aggravate the tumour and start more symptoms. It is nice to read your posts and see that you are doing so much research yourself and found out about Heidelberg etc. The team seemed to 'poo poo' my suggestion of cyber-knife saying it isn't proven. I also had abraxane written down in my little book to ask if they used this treatment as I've read so much about it from the American websites. They told me about the Scalop trial thing that they use, have read up on that too. Hope you get good news with your scan this week, nice to be in touch with someone from the same area who has gone through what you have with positivity and a fighting attitude. I will tell my dad your story ( although him and my mother shut down and cant seem to talk about things and seem to ignore what is happening?) Catherine

[Slewis7313]

Hi Catherine, so sorry to hear your Dad has also been diagnosed with Pancreatic Cancer. It must be dofficult if they shut down when you try to talk about it as it really does help (though it took us a little while in the early days to appreciate this). Have they tried Maggies at Singleton? The staff their are great, make a cracking cup of tea and will talk about whatever you want. They are all qualified in their own areas and have made a big difference for my Wife. I luckilly live in West Cross so the Hospital is really handy for me, so if you want to get together for a chat at any time (possibly at Maggies) then please let me know. My biopsy was OK, done with enough sedation for me not really having a clue what was going on and no post-peocedure problems.

Good luck to you all and keep us posted.

Steve

X

[cestrian]

Hi Catherine

So sorry to hear of your father's diagnosis and the delays in getting his treatment underway. There does seem to be this hiatus while all the confirmatory tests are carried out, in my own case 2 months from diagnosis to first chemo on a clinical trial.

Please don't worry too much about the biopsy, if your Dad has lesions in his liver they may be able to take the samples there which is much easier to access than the pancreas itself. I was dreading the procedure so was pleasantly surprised to find that at worst it involved only mild discomfort and no real after effects. Luckily they got a positive sample straight away so no need for any action replays!!

Very best wishes and all our love, support and prayers for you, your Dad and family.

Love and Peace

Mike

[Cathy]

Hi Steve

Just to mirror everyone else, hopefully the tumour marker raise IS just a blip.. As you probably know, just something like an infection can cause them to be raised. Fingers crossed for you.

Catherine, welcome to the forum from another Catherine. As Mike said, don't worry too much about the biopsy. It sounds as if your Dad is feeling pretty well so hopefully will be able to start treatment to help without too much delay.

Cathy xx

Edited February 8, 2014 by Cathy

[EmmaR]

Hello Catharine ,

I am from Mid Glamorgan and we have two very good hospitals in Wales for the treatment of Cancer but they all seem the same with waiting times for patients with PC as there is so little research into it and Doc's are slow to diagnose it but there does seem to be more awareness lately and I am sure you are doing the best for your Dad so stay strong and the help, info and support you receive from this forum is brilliant .

Steve stay positive as always X

EmmaR x

[cestrian]

Hi Steve

As you say, two steps forward one back but hopefully the marker reading is just a blip! For some reason I've never been given any readings - perhaps they are too depressing!! Whenever I raise anything of a technical nature I always get the same response "Oh it's how you look and feel that's most important". Maybe they think an old codger going on 70 wouldn't grasp any figures they provided, possibly forgetting that up to Christmas I was still working as a Chartered Financial Planner!!

Anyway fingers crossed for your CT scan, I've got one myself on Tuesday, Can you just confirm that Abraxane is still only available privately and how this fits in with your NHS treatment.

Love and Peace

Mike

[Slewis7313]

Thanks Mike, I think my girls and comments here have managed to convince me the CA19-9 may indeed be just a blip. I have no other systems such as the ones I had when first diagnosed (no pain or stomach discomfort).....It was so unexpected, I think I automatically thought the worse. We shall just wait and see.

The Abraxane is still only available privately and I have not discussed the detail with my Oncologist as to how we get around this. It is however definitely an option for her and my understanding is that it is prescribed for other cancers, so there must be a way. As soon as (if) it is sorted, I'll let you know.

Thanks all for the supportive comments.

So it's rugby this afternoon (Ireland do cause us some concern) and 'New Jersey Nights' this evening in the Swansea Grand Theatre..... These should take my mind off it for now anyway!

Enjoy your weekends as far as possible all and take care.

Steve

X

[InfoForMum]

I can't wish you luck with the rugby, my Mum would kill me, but will add my hope to the fact that blip is a blip.

Sarah

XX