Thoughts from the PC frontline

[WifeampMum]

As part of my quest to be as well-informed as I can about PC, on Wednesday I attended a meeting of the All-Party Parliamentary Group (APPG) on pancreatic cancer:

http://www.pancanappg.org.uk/

The theme of the meeting was treatments, and several experts gave presentations on current and new treatments including NanoKnife.

My main take-aways from the meeting were:

1. Members of the public are very welcome and anyone can ask a question at the end of the meeting.

2. It felt really good to be in the company of MPs and peers who are concerned enough about the disease to commit time and effort.

3. There were no surprises from the experts - progress in PC treatments is disappointingly slow but there are far more trials going on now than there were 5 years ago. Hot topics are immunotherapy and personalised medicine. Combination therapies are possibly more effective than mono-therapies.

4. There is still hardly any data on the efficacy of NanoKnife. The Prof needs to publish!

5. PC needs more money for research, more internationally-collaborative research, more trained specialists e.g. GI clinicians trained in PC.

I hope that the APPG-PC makes the presentation slides available - lots of really interesting stuff in them and much that the presenters had to pass over due to lack of time e.g only 10 mins was allocated to PCUK's overview of current treatments!

[Proud Wife]

I know you don't do the "coping with loss" stuff so as you've posted here W&M, just thought I'd say hi. Hope you are well. I am in awe of your research btw. Both you and DG are forces to be reckoned with!

Love PW xx

[WifeampMum]

Hi PW, thanks for dropping by to say hi.

I am really good thanks. Hubby is in the final month of 6 months adjuvant chemo. It's been a very long and extremely tough road for him but boy has it been worth it, as he is currently NED (No Evidence of Disease) and his CA19-9 is well within the normal range. That's after 2 major surgeries, folfirinox, radiotherapy with Capecitabine, and now Gemcitabine.

I think it's so important to get the happy stories - like mine - out on the forum as otherwise newbies will think it's all terribly grim and that it's downhill all the time for everyone here. When things are going well (as they are for me) I suspect people tend not to post, either because they want to get on with life and forget about this place, or they're like me and are superstitious about posting good news. I just don't want to jinx things. I know it's completely illogical and unscientific but I find it very hard to shake off that feeling. So thankyou for coaxing my good news story out of me. I do hope it's given some readers hope.

And yes, I've decided to avoid the 'coping with loss' stuff as I've had my fair share of exposure (having lost my Mum in March) and as hubby is very much alive. For which I thank my lucky stars pretty much every waking moment of every day.

I hope you are OK PW, I think about you a lot.

Love

W&M xx

[Proud Wife]

WOW! Lovely, lovely post W&M! You are absolutely right, happy stories are few and far between but go a massively long way to show there is always hope. I am not going to say too much about your husband's condition, you will know everyone of my unsaid words because I too worry about tempting fate, let's just say he's amazing but he's also amazing because of your love and devotion too!

Sadly enough, I waited until January this year before I joined the forum and as soon as I posted a "happy story" to give hope to others about to try folfirinox, unbeknown to us at the time, that's when progression started. I know this forum had nothing to do with it but...!

You are absolutely right, why should you ever go to "coping with loss", every single one of us on here know you care but your priority is your hubby first and foremost. I hope and pray never, ever to see you over there. You do far more than your fair share by keeping everyone updated with developments in the fight against PC.

Have a great weekend xx

[WifeampMum]

Recently Dandygal mentioned on her thread about the prognosis for PC sufferers improving significantly once they've survived one year or so after diagnosis.

There are plenty of articles about this on the Internet - the concept is called "conditional survival". Here is a fairly user-friendly one:

----------------------------

Title

Cancer prognosis improves with time: StatsCan

(April 2011)

http://www.cbc.ca/news/health/cancer-prognosis-improves-with-time-statscan-1.1004523

"The prognosis for many Canadian cancer survivors tends to improve, sometimes substantially, after they survive a year or more, a new Statistics Canada report suggests. [snip]

The good news in this story is, for many, many patients, once they have gone for two or three or four years after cancer diagnosis, their survival compared with the general population is really dramatically better than it was at that time they first had that chat with their oncologist. [snip]

'Conditional survival data provide more accurate prognostic information about how the risk of death changes over time,' the report's authors said. [snip]

The estimated five-year survival rate for people with cancer of the pancreas is six per cent at diagnosis, but it's 28 per cent among one-year survivors and 88 per cent among five-year survivors."

----------------------------

It should be noted that the 28% 5-year survival figure covers all one-year survivors i.e. it includes those who have been resected and those with a neuroendocrine tumour.

For those who have been living with PC for 1 year+ and want to see in more detail what this might mean for their prognosis, MD Anderson have provided a calculator here:

http://www3.mdanderson.org/app/medcalc/index.cfm?pagename=pancreascancer

It's important to remember though that these are still just statistics and everyone is an individual - particularly, it seems, when it comes to PC.

[Dandygal76]

Mmmm... I keep hovering over the PC survival calculator and all I can hear in my ear is my other half warning me last night not to do it! We just need to keep aiming for January! We are 3 weeks now from next scan results, where does the time go. Glad you are doing okay W&M, you know we are all routing for your family and here for you if you need us. x

[WifeampMum]

...and I'm rooting for you and yours, and everyone who comes here. This forum is an amazing place, so much compassion and understanding.

The calculator is a pretty crude tool so if you do decide to have a look, bear that in mind. For example it's based on fairly old data so the figures don't take account of the newer treatments like Folfirinox, Abraxane. And your Dad could be on the trial drug and that might be giving the disease a massive bashing.

Edited September 30, 2016 by Wife&Mum

[WifeampMum]

Hubby and I met with our MP at his surgery this morning. He agreed that more could be done to improve the situation for PC sufferers and he is going to join the APPG-PC (All Party Parliamentary Group on PC). We're so pleased that he cares enough to take an interest.

We're also celebrating because it was hubby's last chemo session this week. Hopefully next week's scan will show NED (No evidence of disease) just like his last scan did back in April.

W&M xx

[Guest]

Fantastic! Have a wonderful weekend both of you. Xx

[WifeampMum]

Thank you M. Big hugs. xx

[sandraW]

Hi W&M Good news about your hubby finishing this round of chemo, fingers and all toes crossed for great results from the CT scan, have that lovely weekend M wished love sandrax xx

[Proud Wife]

Fantastic-osy! Well done H of W&M! I too will be crossing fingers and toes for a brilliant scan result.

Lots of love

PW xx

[WifeampMum]

Thank you Sandra & PW, I will post with his results when we have them. Love W&M xx

[Guest]

Waiting, its the worst part no matter how positive we feel.

I'm right there with the others willing this to be good. You are a great supporter and carer W&M and you do an ace job with the research that gives hope to so many. We all know that there is hope and we try to beat off the little worry that grows as we wait but you have every reason to think the best on this occasion, isn't that something!

Much love to you, you are often in my thoughts M xx

[WifeampMum]

Marmalade, thank you.

Scan was yesterday, results Friday - great that they are so quick this time.

I'm looking forward to a trip to the PCUK offices this afternoon for a 'Research Involvement Network' meeting

http://www.pancreaticcancer.org.uk/get-involved/get-involved-in-research/

and whilst I'm there I hope I can say 'hi' to the wonderful PCUK nursing team.

And M, you are in my thoughts so much you wouldn't believe it.

W&M xx

[PCUK Nurse Rachel C]

Dear W&M,

That is fantastic that you are attending the 'Research Involvement Network' meeting today and thank you so much for giving up your time to do so.

Its vital that Researchers and people living with or people affected by pancreatic cancer get to work together collaboratively like this, Evidence suggests that this is a way of improving the quality of the research and also recruitment in to trials, which is definitely a positive move.

W&M, I do hope that you get something out of the meeting an please do share with your Forum Family after.

Unfortunately, as you may be aware, we as nurses are not based in the London office, so sadly wont be able to meet with you which is such as shame!

Kindest regards,

Rachel

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[Veema]

Fingers and toes very much crossed here for your results...it's truly heartening for newbies that there are positive stories out there.

Vx

[WifeampMum]

Thanks Rachel and Veema.

Yesterday's meeting was very interesting and hubby and I were made to feel very welcome by PCUK. We also met some lovely people - staff, and members of the RIN.

The meeting was called because PCUK are preparing a new 5 year research strategy, to be launched next year. They are currently meeting groups of stakeholders to discuss how best to spend their research funding. Clearly it's really important that the charity invests its money wisely and my main take-away from the meeting was that PCUK takes this responsibility very seriously and all the indications are that they will do a great job.

Unrelated to yesterday's meeting, I'm pretty excited about a couple of new research initiatives that have been announced in the medical literature in the last few weeks. Both are based in the US. They are:

1. Precision promise (Pancreatic Cancer Action Network)

https://www.pancan.org/news/promise-pancreatic-cancer-patients/

Based on personalised medicine, this is a new approach to PC clinical trials which will hopefully encourage greater numbers of patients to take part and improve treatment success rates.

2. Pancreatic cancer convergence team.

http://www.wsj.com/articles/physicians-and-physicists-join-forces-to-fight-pancreatic-cancer-1474855741

A team that includes oncologists, surgeons, theoretical physicists (!!!!!) and computational biologists has been brought together to develop a clinical trial to test whether synthetic vitamin D can make tumours vulnerable to a patient’s immune system.

There does seem to be a real buzz around PC research at the moment, which is so good to see.

W&M xx

[Justamo]

And it's people like you, W&M, who contribute so much to the process. And I'm so grateful to you and DandyGirl for the immense effort you put into the cause.

Love, Mo

[Guest]

I'll second that. M xx

[WifeampMum]

Thank you, lovely ladies, for your good luck wishes. Hubby's scan was clear, he remains NED

The plan, now that treatment has ended, is:

- Port removal

- Hospital checkup every 3 months, alternating between oncology team and surgery team

- Blood tests for CA19-9 and diabetes every 3 months

- Hubby will continue to take Creon, Vitamin D, Bitter Melon capsules

- We are asking GP to prescribe statins as there's evidence that these help prevent recurrence post-Whipple.

- I will keep researching (and posting my findings) as I enjoy that kind of thing. Plus it doesn't do to become complacent.

Love and virtual hugs to all on this forum but especially to those who are struggling at the moment.

W&M xx

[Dandygal76]

That is fantastic news. Can I ask what Bitter Melon capsules you use after all your reseach. Bitter Melon tastes really awful.

I am so pleased for you W&M and please don't leave at all, even if you just pop in. I have found your research has really helped me and also when you look into what I post and clarify matters.

Big big hugs to you all. Long may hubby be PC free. What a relief it must be. xx

[PCUK Nurse Jeni]

Hello Wife & Mum,

What a wonderful post to read at the end of a week!

Absolutely brilliant news - very very happy for you and hubby! And as others have said, its great to have some good news.

I am very impressed with such a clear plan as well, and think the alternate care between surgeons and oncologists is brilliant. And really impressed with the 3 monthly diabetes bloods - ca 19.9 would usually be done, but not glucose, so that a very positive step forward.

All the very best, and I hope that you have something wonderful planned for the weekend!

Kind regards,

Jeni

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[sandraW]

Hi W & M As Jeni says what fabulous news, I am so pleased for you both, continue to take care of yourself too, love sandrax xx

[Dandygal76]

W&M I need your help. I am not sure where I have seen it but I am sure I read an article and I thought it was MD Anderson where they put something like 12 patients through various individual care plans and all were surviving and I was thinking it was stage IV. I know this sounds mad but sometimes I actually dream things I think are then real (my sleep is as intense as my reality!) and I am starting to doubt myself. Have you seen this article? This is going to ruin my day and my house needs tidying!