Any questions about research into PC?

[WifeampMum]

Dear all,

The PCUK Annual Summit is taking place next Wednesday (15th Feb). This year the title is: Inspiring Innovation, and I’ve been invited to take part in a Panel Discussion entitled: Transforming the research landscape.

As the only carer/patient voice on the panel I’m very keen to represent not just me and my hubby but the wider community. So, my wonderful Forum Family, if you have any burning questions on the topic of PC research that you’d like me to put to the panel experts** please let me have them in a reply to this post.

**The panelists include consultant oncologists, an expert in health economics and data, a professor of immunology and Anna Jewell, Director of Operations, PCUK.

More details of the Summit here:

https://www.pancreaticcancer.org.uk/policy-and-campaigning/policy/pancreatic-cancer-uk-summit/inspiring-innovation-summit-2017/

Many thanks

W&M xx

[Dandygal76]

I have loads to say (when do I not?). Really well done for getting your voice heard and I will contribute but I will do via e-mail to PCUK and they can send to you (or I will request your e-mail). This is what I do and you will have a well researched response. x

[WifeampMum]

That's great DG, many thanks.

PCUK - I'm happy for you to share my email with Dandygal.

I hope today is a better one for your dear Dad.

W&M xx

[LanasMum]

I am still in the information gathering stage, so don't really know enough to provide constructive comments - just wanted to say I am really appreciating the information from all the lovely people on this forum - you probably don't know how much you have helped me prepare for the future, understand what to expect and generally feel like my family is not alone..

As for research - I'm obviously interested in anything upcoming that may help people in the next few months but can't think much beyond that at the moment. I've seen some research that suggest cancer should be treated as a metabolic disease - interested in hearing where that goes / if it is valid, and my biggest issues at the moment are more around treatment - response times, appointment delays, a general lack of urgency and "dead man walking" attitude. I am really really saddened by all the stories on this forum where relatives have had to fight so hard to get the care needed.

I know that isn't strictly research and I'm probably rambling, so will stop now

[WifeampMum]

Hi LanasMum,

Many thanks for responding and it's good to hear that you've found the forum a help.

I will certainly keep my ears open for anything that might help patients and carers now or in the very near future. I've not heard anything about the metabolic disease aspect of cancer so I'll certainly listen out for that too.

Wishing you and your Dad the very best

W&M xx

[LanasMum]

Hi

This is one of the references - http://www.canceractive.com/cancer-active-page-link.aspx?n=469

The site looks a bit cheesy, but was recommended to me by someone who nursed her husband through lung cancer, getting great results with some of the recommendations - if you read to the end of the article, it seems to sound more plausible.

Thanks again

LM

[WifeampMum]

Hi LM,

I steer well clear of alternatIve cancer therapy websites like the one you were recommended to. I've just found a page on the Cancer Research UK website that mentions the Gonzalez therapy along with other metabolic treatments:

http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/complementary-alternative/about/harm/the-safety-of-alternative-diets

It warns:

"Some treatments used in metabolic therapies can cause harm – for example, coffee enemas carry a risk of causing a chemical imbalance in the body. And some nutritional supplements can be harmful in high doses. So, if you are thinking of trying an alternative diet, it is very important to talk to a dietician and go through the diet with them. They will be able to advise you about how safe it is for you. Your hospital doctor or specialist nurse should be able to arrange for you to see a dietician."

I think this is very good advice!

W&M xx

[PCUK Nurse Jeni]

Thanks W&M for posting this helpful link.

You are right that the Cancer Research UK webpage is very good advice and information concerning some of these very stringent diets.

Some of the therapies suggested would cause great harm to those suffering from pancreatic cancer, and

may interfere with other therapies.

A good discussion with your care team/consultant/oncologist is advisable before going onto such diets etc....

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[LanasMum]

Thanks for the link and advice. I consider myself fairly sensible, so would not do anything without checking - and Dad wouldn't let me anyway !! very dubious of coffee enemas - I have a quackery radar and it pings at that !