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So far so good!


Slewis7313
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PCUK Nurse Jeni

Wow, Steve! Just utterly made up for you!


What a brilliant result! That is just so super to hear Steve. And yes, you have had a few major hits on you this past year, so no wonder you are still tired, though still running around I am sure! I think we all feel tired at times, and some of us have not been through what you have been through.


Yes, you sorted France! Sorry that we have left the challenge to Wales for England now! (lol!!) Go get em Steve! We need you to!


Enjoy the weekend, and do something special to celebrate as a family (I am sure that you are anyhow!)


Very best wishes Steve,


Jeni.

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Steve, and Mike (cestrian) also Mark(MSH) if you're reading, hope this is okay but look at tribute wall.

I'll delete if necessary, I don't know how to contact you other than here.

Julia x

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Hi Steve well we finally had the diagnosis that my dad has adenocarcinoma tumour on the head area of his pancreas, they were supposed to biopsy his liver aswell as pancreas but the said whilst they were ultrasound scaning it when doing EUS they couldn't see anything to biopsy so are saying he has locally advanced cancer. We have first meeting with oncologist next week and go from there. I was asking if they had used abraxane yet and the nurse said that it wasn't licensed in uk yet, when I know it is. She didn't have any other info on it, I know it hasn't been approved by NICE and is up for hearing in the Cancer Drugs Fund on March 6th. Were you going to have your abraxane paid for privately? just wondering as want as much info to take into oncol. meeting with me next week. Obviously if I can manage to get through NHS great but if we have to pay then so be it. Dad remains looking well,, eating loads, no weight loss and no symptoms (only lots of worry!) so glad about that. Sorry to jump on your post but cant see where I make a new post or mail you direct?? Hope you are feeling well and continuing to live life to the full - Cath x

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Hi Cath, it's all sounding reasonably good (by Pancreatic Cancer standards). My latest scan has confirmed my tumour is stable so I have agreed to do nothing for now. I had discussed Abraxane with my Oncologist who did not seem to have an issue with incorporating the privately funded drug into my treatment plan. We did not however discuss the detail of how it would work. Nikkis has experience with this and might be able to help you with this Cath. If there is anything else I can help with please let me know.


Steve

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Hi Steve and Cath,

Yep we are plodding on with abraxane. I would urge caution Cath before embarking on paying for anything yourself, Paul's is paid for by the insurance company and the bills quickly mount up, to ridiculous amounts. Paul had Folfirinox first and then changed to Abraxane when his symptoms became worse, and the tumour was not shrinking. It has shrunk since he started Abraxane a little, but we don't know if this happened at the end of the folfirinox treatment or was down to the Abraxane. The side effects seem worse with the Abraxane, particularly the peripheral neuropathy, but this might be a cumulative of all the chemo.


What I would say is that our oncologist (also referred to by Sarah as "the wunderkind"), is pretty dynamic and not restricted by NICE and his first choice was Fofirinox. Until Abraxane is approved and widely used, we won't really know how good it is, but that is a another thread!


Hope that helps, although it probably just confuses, sorry!


Nikki

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Ah thankyou both for replying, any info is help thanks! good to know your experiences nikki, and what paul started off having. its hard trying to get enough knowledge to go to the first oncology meeting with and I sometimes look too deeply into things I need not and should put faith in the experts! I did want my dad to have nano/cyberknife as I have read so much about these procedures, but he seems to want to start chemo asap to try and halt further growth. And he is prob thinking about the cost (to me if it gave him less side effects than chemo and could control the tumour growth for a while its priceless!!) but there you are I have to go with his wishes. We see oncol for the first time on Monday morning, will keep you posted as to what they suggest. My mum and dad have fallen apart today think its all sinking in again (we were like this back in November when consultant said he had a tumour)suppose its all part of the process.


I am definitely going to take them to Maggies next week Steve, I think they will like it once ive finally got them through the door!

Thanks again Both will keep you up to date with progress! X CATH

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PCUK Nurse Dianne

Hi Steve & Cath et al,


Thanks for the supportive information Steve for Cath. I also wanted to say Cath I note you mentioned Nanoknife/Cybernife and your father wanting to have chemotherapy first. This is ideal, especially for both of these treatments as they would not be given alone in the first instance. It is usual that 3 months of chemo is given in the first instance and review response to treatment before then considering the other therapies. There are some trials due to become available this year (I believe they are in setup stage at present) using chemo and cyberknife (radiotherapy) and also with Abraxane, so as soon as we know these are open we would hope to have further information about this.


Cath, do feel free to email us if you would like to have further discussion about the Nanoknife/Cyberknife issues, and we can give you some more information if that would be helpful (support@pancreaticcancer.org.uk or 020 3535 7099).


Regards,


Dianne

Pancreatic Cancer Specialist Nurse

Support Team

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  • 1 month later...

More good news. I was called for a routine CT Scan and bloods yesterday. I received an email this afternoon from my Specialist Nurse confirming that the CT Scan results are good.......remains stable with no signs of any spreading. Looks like I will continue doing nothing for now! Meeting the Oncologist to discuss next Thursday.


Steve

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Not sure why I am being given such a relatively 'easy' ride with this thing! I am assuming it is (in part anyway) down to the fact that my GP was so quick to pick up on my original symptoms and get me in for treatment promptly. As a result, it never got a chance to jump to any other organs. That said, this damned thing seems to have such an arbitrary nature, giving some people absolute hell whilst being gentler with (relatively few) others. We are obviously delighted that I am doing so well, but remain realistic about what the future may hold for me.


Steve

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Good to learn things are stable with you Steve. My oncologist described mine as relatively indolent which was good to hear. It does seem very much a lottery.

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MSH wrote:

> Good to learn things are stable with you Steve. My oncologist described

> mine as relatively indolent which was good to hear. It does seem very much

> a lottery.


MSH indolent must have been a wonderful word to hear .

EmmaR

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'Easy ride' he said, which may have been viewed as tempting providence. Well today I saw my Oncologist who confirmed my previous worrying tumour marker of 500+ is now 1400! It is obviously coming back to life and something needs to be done. I am to go back on chemo in 3 weeks and the recommendation from my Oncologist is Folfirinox, though we did discuss Abraxane and she is happy to go down that route (privately funded) if I insist. As I am physically so well at the moment, the consensus is that The old Furry Fox will be of greater value to me at this point in my illness. I am having a PICC installed in 3 weeks during which time I can review the drug option. It's all a bit new for the Hospital as they have not really had a Pancreatic Cancer patient where the disease is only locally advanced. I am obviously not particularly looking forward to the next round of treatment, but hey.....it could be a lot worse!


Steve

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Steve just put your faith in what your Oncologist as suggested and hope the old Furry Fox will race all over it ...


All my Best Wishes coming your way .

Emma x

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