A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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cbrooks
Posts: 14
Joined: Tue Jan 28, 2014 11:53 pm

Re: So far so good!

Postby cbrooks » Tue Mar 04, 2014 10:43 pm

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

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: So far so good!

Postby Slewis7313 » Tue Mar 04, 2014 11:21 pm

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
X

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: So far so good!

Postby nikkis » Wed Mar 05, 2014 9:19 am

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

cbrooks
Posts: 14
Joined: Tue Jan 28, 2014 11:53 pm

Re: So far so good!

Postby cbrooks » Wed Mar 05, 2014 10:27 pm

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

PCUK Nurse Dianne
Posts: 287
Joined: Tue Aug 14, 2012 3:29 pm

Re: So far so good!

Postby PCUK Nurse Dianne » Thu Mar 06, 2014 10:05 am

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

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: So far so good!

Postby Slewis7313 » Thu Apr 10, 2014 8:32 pm

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
X

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: So far so good!

Postby Didge » Thu Apr 10, 2014 9:13 pm

That's great news, Steve! x

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: So far so good!

Postby sandraW » Thu Apr 10, 2014 9:18 pm

Really great news Steve take care, sandrax

Fifi

Re: So far so good!

Postby Fifi » Thu Apr 10, 2014 9:33 pm

Really good news. Must be such a relief to you all.

x

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: So far so good!

Postby EmmaR » Thu Apr 10, 2014 10:15 pm

Excellent news Steve ! long may you continue doing nothing about this beast .
Emma x

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: So far so good!

Postby J_T » Thu Apr 10, 2014 10:46 pm

Really brilliant news Steve! What a guy.

Love
Julia x

jules 2015
Posts: 55
Joined: Mon Sep 23, 2013 10:20 pm

Re: So far so good!

Postby jules 2015 » Thu Apr 10, 2014 11:05 pm

Hi Steve
Lovely to hear some good news, hope you continue to be in good health
Julie x

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: So far so good!

Postby Slewis7313 » Fri Apr 11, 2014 9:24 am

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
X

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: So far so good!

Postby MSH » Fri Apr 11, 2014 11:29 am

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.

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: So far so good!

Postby RLF » Sat Apr 12, 2014 8:23 am

Congratulations on your good news! Hope there is a lot more to come!
Rob