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So far so good!


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Slewis7313

Referring back to my update on 30th May, I have now seen the Surgeon. The hernia is small and does not need to be operated on immediately, but he will do the operation when the time is right based on the Pancreatic Cancer situation. The conversation then moved on to him asking if we had met, to which I answered no but gave him a copy of his letter confirming my pc diagnosis in December, stating it was inoperable. We then discussed the fact hat I had responded quickly to chemo with all symptoms disappearing and subsequent gain of 8 of the lost 15Kg. He was also positive about the fact I had not had jaundice. Much to our surprise (Margaret was with me) he then made an unsolicited comment that he had operated on tumours which had initially been deemed inoperable but had reponded well to treatment. He followed this with "hopefully we can operate if things continue well". He had not seen my CT scan from March which showed no shrinkage, but stated he would rectify that tomorrow, epecially as my tumour marker had dropped from 480 to 12. He also asked me to mention to my Oncologist when I meet her tomorrow that they needed to discuss the best date for my next CT scan to ensure a prompt review at the next MDT meeting. He asked if we understood the seriousness of my condition and potential outcomes, to which we said yes and were aware of the possibility of no cure. We have now however had a meeting with the man who has the final decision on surgery and he is using words like 'hopefully' which has given us a major lift.


A really good day!


Steve

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Steve

Wow!thats amazing news it is all sounding very positive for surgery,I have everything crossed for you!

A really really good day!!

Sue

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Slewis7313 wrote :

> Referring back to my update on 30th May, I have now seen the Surgeon. The

> hernia is small and does not need to be operated on immediately, but he

> will do the operation when the time is right based on the Pancreatic Cancer

> situation. The conversation then moved on to him asking if we had met, to

> which I answered no but gave him a copy of his letter confirming my pc

> diagnosis in December, stating it was inoperable. We then discussed the

> fact hat I had responded quickly to chemo with all symptoms disappearing

> and subsequent gain of 8 of the lost 15Kg. He was also positive about the

> fact I had not had jaundice. Much to our surprise (Margaret was with me) he

> then made an unsolicited comment that he had operated on tumours which had

> initially been deemed inoperable but had reponded well to treatment. He

> followed this with "hopefully we can operate if things continue

> well". He had not seen my CT scan from March which showed no

> shrinkage, but stated he would rectify that tomorrow, epecially as my

> tumour marker had dropped from 480 to 12. He also asked me to mention to my

> Oncologist when I meet her tomorrow that they needed to discuss the best

> date for my next CT scan to ensure a prompt review at the next MDT meeting.

> He asked if we understood the seriousness of my condition and potential

> outcomes, to which we said yes and were aware of the possibility of no

> cure. We have now however had a meeting with the man who has the final

> decision on surgery and he is using words like 'hopefully' which has given

> us a major lift.

>

> A really good day!

>

> Steve



This is really good news Steve. If you are able to have the operation....is that not the 'cure' you speak of...ie; tumour taken away? Keeping my fingers crossed for you Steve, you're a fighter.


Linda

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Slewis7313

Thanks for the support everyone. The operation is indeed the cure I am hoping for..... Funny how things change as in the beginning I dreaded any surgery, but now it's the best possible outcome and I can't wait. Not there yet, but it certainly feels good to receive the comments yesterday from the horse's mouth!


Again thanks for the lovely comments and endless support!


Steve

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Hi Steve,

What fantastic news for you and your family, as you say at least surgery is now a possibility. I am delighted for you, onwards and upwards and everything crossed!!

Bee

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Hi Steve,


That's funny what you say about initially dreading surgery and now you can't wait - but I completely understand.


We're really delighted for you.


xx

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Well.... Just had radiotherapy session 28 of 28. All has gone really well and I seem to have no ill-effects from the rays. The strangest thing was saying goodbye to the staff and saying "see you in 2 months". That is approximately when the next CT scan takes place and in the interim no treatment at all..... Not even bloods. It will be strange driving past the hospital and not turning in, though I have promised to keep depleteing the tea stocks at Maggies (they are lovely people). I feel really well at the moment, so now time to enjoy life for a few months and put things to the back of my mind for now (this forum excluded of course).


Take care all


Steve

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Hi,

So glad the treatment has gone smoothly, you have finished this week and Chris has started, four down, twenty eight to go!

It must feel very strange to have a complete break but think you deserve a rest, hope you and your family enjoy every bit of it!!

Best wishes,

bee x

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  • 2 months later...

Saw the Oncologist today to review last week's CT scan results and to be honest, the outcome was exactly what we expected. Mixed news, but the Radiotherapy has worked to a degree. The 3cm tumour is now 2.2cm and has not spread which is great, however it is still entangled with the Artery and remains inoperable. The MDT agree that this is unlikely to change in the future. I will now have 3 monthly CT scans to monitor, but no further planned treatment For now. I am comfortable with this and am meeting the senior Surgeon as soon as possible to discuss the detail and review any non-NHS options I am considering. Jeni had advised that trying to switch from Clexane jabs to Warfirin is complicated and perhaps ill-advised...... My Oncologist said exactly the same so I remain on Clexane until further notice.


So the news could perhaps have been better, but likewise could have been a lot worse. It will be nice not to have any treatment, but in some ways worrying as we seem to be monitoring the situation and waiting for the symptoms to deteriorate at some point, at which time we will hit it again with chemo.


I am however feeling good at the moment and will try and carry on as normal, whilst looking at other options such as NanoKnife and will again ask Heidelberg for a second opinion.


I'll keep you all posted on any developments.


Take care all


Steve

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Hi Steve


Well that is GREAT news about the tumour reduction and the disease stability. Disappointing the darned thing is still tangled up but who knows what options may lay ahead for you in terms of future treatment so very good reasons to feel positive.


I know what you mean re having a break. We are the same - Jonathan is flourishing on his (blood sugar sorted so has even been able to stop insulin injections) but he does feel a little unsettled being monitored and waiting for something to happen so I do understand entirely what you mean. Saying all this, it is such a relief for us to be having a nearly normal life again and making the most of it so I hope you do too.


Re Clexane - we have been told contradictory information for how long the injections are needed from 3 months to life. I will be asking the oncologist if we can have a break on those as well when we see him next. What have you been told?


Keep us posted with how you get on


Cathy xx

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Thanks Cathy. It would seem the Clexane issue is a grey area! It would appear that Warfirin does not mix well with chemo (and most other drugs from what I could ascertain). If I were to go onto Warfirin, I would need weekly blood tests to monitor, which is not a requirement with Clexane. I also have a small hernia operation coming up which would again involve having Clexane, so we have agreed to carry on until at least the next CT scan and if all is OK at that time we can review (but not necessarilly stop) the jabs. As my blood clot was in my Lung, it is apparently standard procedure to adminsoter for a minimum of 6 months and possibly longer depending on how I am doing. Whilst I was keen to move off the jabs, after discussing with the Oncologist, I am more than happy to stick with them for now.


Steve

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We had exactly the same Clexane conversation today, weekly blood test, v warfarin etc. We'll stick with the Clexane thank you!


What great news about tumour shrinkage! Definitely time for a little bit fizz methinks!


Great stuff!

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PCUK Nurse Dianne

Good to hear your news Steve,


I can imagine it is with mixed feelings, this pathway is not always straightforward unfortunately, however yes that is a positive that the tumour has shrunk. Helpful as you mention to always have other options to look into, and I am sure a break away from treatment and hospitals would be a welcome break.


As for the warfarin/clexane debate, this is a common issue and Jeni and I were talking about it yesterday. With clexane, there is no monitoring as such, and Warfarin is at least a weekly blood test, and dose changes will often require more frequent monitoring. Also Warfarin has many interactions with other medications and some foods, and has a longer 'half life' which in pharmaceutical terms means that it stays in the system longer. Clexane has a shorter life due, so therefore is far easier to stop if need be, as Steve said with his potential hernia operation forthcoming. . Also as mentioned, Warfarin it is not suitable for use with chemotherapy, where as Clexane is.


Treatment with clexane varies between patients/clinicians. For non-complex cases of DVT (deep vein thrombosis) the treatment is often only 3 months - this may be your well fit person who has developed a DVT through travel, sporting injury or otherwise. We do know that those people who have a 'cancer diagnosis' are often more prone to developing deep vein thrombosis so as we say once diagnosed then 'prevention is better than cure', so you may find that the treatment regime will be 6 months, or in some instances longer.


Dianne

Support Team

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That is such good news Steve, down from 3cm to 2.2cm, I tell you if I get a result like that I will be over the moon.


It's difficult when we're in this sort of "Limbo" stage, it's the not knowing which (if you let it) can become a bit of an obsession, but we can't let it, we have to do like Mo Farah is doing right now in the World Championships in Moscow and holding other runners off in the 5000 metres race (Friday 16th BBC 2 6pm) he's going for Gold.....and YAY! He's done it....it was hard, but he did it.....we have to take inspiration from people like him, he never, ever gives up and neither will we.


I do so hope you are able to have Nanoknife or the 'Big' operation Steve, it would deffo be the icing on the cake for you and your family. For myself, I'm a great believer in saying as one door closes another will open, I've just got to find the key :-)


Catch you again soon Steve take care x

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As a follow up to the news from the MDT last week that my tumour remained inoperable, the Senior Surgeon invited me to a meeting to discuss the detail. I had half hoped they were perhaps reconsidering as he was going over my scan again. Not to be I'm afraid..... He detailed the problem which we now fully understand for the first time. The arterial involvement is actually the tumour growing across a part of the artery where 3 branches break out. To remove the tumour, he woud need to cut away all 3 branches which together supply 90% of the gut! If it was only one branch, he could have a go, but three branches make it impossible.


He has stated he will support us in any alternative associated activities and would be happy to discuss any options we wish to consider. Looks as though we will continue to monitor the sitation with 3 monthly scans and reviews with the Oncologist.


Could be worse!



Steve

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