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So far so good!


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Met with my Oncologist yeterday and all remains well, but time for change. We agreed that removing Oxaliplatin was the right thing to do as the neuropathy is constant and will affect my ability to work if it got any worse. I also requested moving from a 2 weekly to 3 weekly regime to allow us to get out and about more. My Oncologist is so pleased with my progress that she has no issue with this at all. So we have a business trip to Germany in 2 weeks (my Company cover insurance) and also a week's holiday in Teneriffe booked for January (no insurance, so if I hit problems it is the first flight home).


We are really pleased with how the review went and looking forward to having more quality time to work with.



And finally, a reminder that the first meeting of the Swansea Support Group takes place this Friday at Maggies. Details are in the following link:


http://www.pancreaticcancer.org.uk/information-and-support/support-groups/forthcoming-support-group-meetings/2014/november/wales-support-group-launch/



Take care all.


Steve

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Fabulous Steve, as ever inspiring. Good thinking spacing the treatment so get more good days to enjoy stuff. Not sure about a business trip but Tenerife sounds fab! lol


KBO


Julia x

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Sounds like some excellent plans there Steve. Paul had a routine appointment with our GP and he was very surprised that the plan is to continue with the chemo, but I enlightened him that on going chemo is all the rage in the world of PC!

Best wishes,

Nikki

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  • 2 weeks later...

Nothing new to add really, but tomorrow is a red letter day so I had to mark it with a post. I am travelling to London tomorrow for the Pancreatic Cancer Survivors bash which I am really looking forward to. Coincidentally, tomorrow marks exactly 2 years since my diagnosis and I am still doing really well (by Pancreatic Cancer standards!). I today received confirmation that my PET scan is happening on 16th December, so I should be well armed with lots of useful information for the New Year to decide on the next steps.


We are off to Germany on Monday for 4 days...... Not sure if Gluhwein will show up on the PET!


It's hard to believe how far we have come in the last 2 years and we are so happy that I am still in a position to keep fighting this damned thing.



Take care all


Steve

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PCUK Nurse Jeni

Steve,


Sorry to have missed you - again - on Friday!


Drink plenty of gluhwein!! Lovely stuff for the cold weather! Lol! (I am joking - everything in moderation!!)


Enjoy the trip and take care,


Jeni.

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The 'Pancreatic Cancer Survivors' meeting in London was really good. We were around 25 in total and exchanged stories which was in itself really interesting. Everyone had similar stories to tell, though at the same time very one was slightly different. The discussions around the importance of exercise were a wake-up call for me as I have really slowed down since starting Folfirinox. The first few cycles were difficult and I let Margaret take on the dog walking and many other physically challenging tasks. At the meeting I realised that my situation / condition had improved with time and that I should Have picked up these tasks again rather than sit back and watch Margaret do 'my jobs'! This will change immediately as it is doing none of us any favours. We also debated Creons at great length and discovered (unsurprisingly) that there is a lot of conflicting information out there regarding dosage. Again, as a result of the conversations I will be experimenting with my Creons to see if it helps with my weight and diaohrea.


Germany was great and only possible as a result of moving from a 2 week cycle to 3 weeks. Margaret did the flush with no problems while we were away.


I now have a PET scan on Tuesday and will be requesting a second copy of the report to pass to Professor for his perusal. Not sure where that will go, but 'nothing ventured, nothing gained'!


Back on chemo on Wednesday.....number 14.


No real problems at the moment apart from the Neuropathy which is not improving. I can still button up my shirt, though it is a challenge and I have occasional problems picking things up if I don't concentrate.


All in all, still doing really well.


Take care all.


Steve

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thanks for the update Steve, it all sounds really positive, way to go you!


Hope you get a good result from the scan and you can get good feedback from Prof , fingers crossed.


Now get out and walk that dog! ;) :D


Best wishes for Christmas to you, Margaret and your family.


Julia x

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What a shame my fella didn't go to the London meet - I'm not sure he heard about it as I'm sure he would have wanted to go. He has not had his folfirinox for, what will be 4 weeks the coming week, assuming he has it this week. What made the permanent change to 3 weeks, Steve? We might need to change it too if the platelets keep being affected. Glad Germany was good! x

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Thanks both.


Didge, the decision to go to 3 weeks came from us, but was supported by my Oncologist as I seem to be responding really well to Folfirinox (except for Oxaliplatin which we have dropped because of the permanent Neuropathy). We found the 2 week regime very confining and stopping us from getting away which also included me getting into my (Basingstoke) office once in a while. It was the balance between treatment and quality of life that ultimately drove us to make the decision. I have felt particularly well the last 2 cycles which is probably in part due to the removal of Oxaliplatin. We just need to keep an eye on the Tumour Marker!


Steve

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Good to hear that things continue to go well Steve. I hope the Nanoknife is an option for you, it is almost a year since I had mine and I think it did a lot of good. I am amazed that you are still working, but don't like to think that this is influencing your treatment, but I agree it is a balance between this and quality of life.

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Hi Steve


Glad you enjoyed Germany and the survivors lunch. You are doing amazingly well!! Jonathan had the oxalyplatin dropped eventually from his treatment too. It did help. He was a guitarist so it was lovely to see him enjoying playing it again.


All the very best to you, Margaret and your family


Cathy xxx

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PCUK Nurse Jeni

Wonderful update Steve - sorry to have missed the lunch this time round. Its great to hear that you found it so useful and informative. The walk looked interesting as well!


Hope that you continue to improve now that you are down to 2 drugs in terms of chemo. And that you enjoy taking the dog out again!


Wishing you well for the CT results also.


Kind regards,


Jeni. (and Dianne!)

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I had my 14th chemo session today which was without incident. It did not include Oxaliplatin because of my ongoing and constant neuropathy. If anything, the tingling has worsened a little and I have daily fights with shirt buttons, but I am still winning! My marker has dropped slightly from 90 to 88, which after moving to a 3 weekly regime and dropping Oxaliplatin at the same time is pretty good.


I had my PET scan yesterday and will review with my Oncologist on 2nd January. They will supply 2 copies of their findings so I can forward 1 to Prof .


I am ever concious that I am lucky, with things remaining stable and I feel reasonably well, which will allow us to enjoy the upcoming festivities!


Whatever your personal situation, I hope you are able to take some pleasure from the holiday season. For those who are struggling or spending their first Xmas without a loved one, my (and I am sure others who frequent this place) thoughts and best wishes are with you.


Steve & the girls

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Damned Neuropathy! Though only a few days since my last update, my Neuropathy has become noticably worse. It is now constant across my hands and most of my feet. Whilst not painful as such, it is worrying as I have not has Oxaliplatin for over 2 months but it continues to slowly worsen.


Any thoughts and/or experiences?


Steve

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Hi Steve


We (Jonathan) had this experience.


Dropped oxalyplatin but neuropathy continued (and got worse) for a while after. Drove Jonthan nuts but it did get better. He started playing guitar again! It was lovely :)


Xxx

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