A forum for family, friends and carers of pancreatic cancer patients

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sandraW
Posts: 1044
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thoughts from the PC frontline

Postby sandraW » Sat Oct 01, 2016 2:00 pm

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
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Thoughts from the PC frontline

Postby Proud Wife » Sun Oct 02, 2016 7:50 am

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

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Sun Oct 02, 2016 5:03 pm

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

Marmalade

Re: Thoughts from the PC frontline

Postby Marmalade » Sun Oct 02, 2016 7:16 pm

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

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Wed Oct 05, 2016 10:38 am

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- ... -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
Posts: 61
Joined: Wed Jan 14, 2015 4:25 pm

Re: Thoughts from the PC frontline

Postby PCUK Nurse Rachel C » Wed Oct 05, 2016 12:35 pm

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
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Thoughts from the PC frontline

Postby Veema » Wed Oct 05, 2016 6:27 pm

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

Vx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Thu Oct 06, 2016 10:52 am

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-pan ... -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- ... 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
Posts: 473
Joined: Sun Sep 04, 2016 10:38 pm

Re: Thoughts from the PC frontline

Postby Justamo » Thu Oct 06, 2016 11:18 am

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

Marmalade

Re: Thoughts from the PC frontline

Postby Marmalade » Thu Oct 06, 2016 8:06 pm

I'll second that. M xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Fri Oct 07, 2016 4:56 pm

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
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Fri Oct 07, 2016 5:06 pm

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
Posts: 1099
Joined: Mon Jun 14, 2010 1:30 pm

Re: Thoughts from the PC frontline

Postby PCUK Nurse Jeni » Fri Oct 07, 2016 5:06 pm

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
Posts: 1044
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thoughts from the PC frontline

Postby sandraW » Sat Oct 08, 2016 1:11 am

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
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Sat Oct 08, 2016 9:11 am

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!