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Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: New Treatments

Postby Dandygal76 » Thu Jul 07, 2016 12:12 pm

Hi Catherine

I hope my post did not cause offence. My swipe was at the drug companies and did not mean to ignore all of the other great institutions and individuals that do so much to take PC issues forwards and to try and encourage and fund trials. I think though the vast majority of funding is still with the drug companies and have been historically, unless that is my ignorance.

PCUK etc do a great job. I have also been rushing my posts around a very busy day so if anything has come across wrong then I do apologise. I can be a tad forthright at times even when I am not rushing!

x

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: New Treatments

Postby Dandygal76 » Sun Jul 10, 2016 10:10 am

Thank you for all of your responses. W&M they were some great links and I must admit I have been quite naive as to what actually goes into this process. I think what I find frustrating from reading all of the responses is that at stage II it does appear there are some promising outcomes. However what seems to be missing from my point of view is something similar to the Medical Innovations Bill where a different approach can be taken and stage II promising drugs being made available to those who are out of options and just want to take a chance. I know that NICE would be a massive obstacle to this as well. People with PC do not care what is coming out in 5 years time (well for themselves - obviously everyone wants to see future patients beat this), they want a chance to look at the stage II research and have a go at something that may help on top of NHS chemo. This will also become more evident as tumour profiling comes in. How frustrating will it be if I get dads tumour profiled and I can see a great stage II drug out there that we cannot touch. Not dissimilar I suppose to all those that have had Forfirinox which is no longer working and cannot access Abraxine. If the insurance companies can manage to fund Abraxine and Wales and Scotland then what is going on. I am just frustrated a little I suppose.

Catherine I am so sorry you have also had to deal with your own breast cancer as well - such a blow to be dealing with that and then your husband with PC. I have only this experience of cancer - it has never touched my life personally. My nan died of it but I was 1. It has been a huge a eye opening and a huge learning curve for me. I am forthright and I put this stuff out the way I do to keep testing the water for a way forwards for dad, just nudge me back if I step over the mark. I will convert this into action like W&M and now dad is quite stable and feeling better it is probably the time.

I believe in the power of people... the more people that write and raise awareness the more PC will come to the fore in decision making where it counts.

W&M I would love an update on any response from you MP. Are you inviting him to attend the APPG? I may pop along to one of the committee meetings and see what is what. x

boa
Posts: 128
Joined: Thu Jul 09, 2015 12:13 pm

Re: New Treatments

Postby boa » Sun Jul 10, 2016 2:43 pm

Hi Dandygirl
I wasn't in any way offended by your post.

You mention funding for Abraxane in Scotland and ?Wales. I'm not an expert on this but my understanding is that NICE did not approve funding for Abraxane for PC patients in England. However, for some time it was funded by the Cancer Drugs Fund but this is now withdrawn. In Scotland and Wales it is different regulating bodies and they have approved it. Rather unfair you may say but there are other treatments for other diseases which are not approved in Scotland - which is where I am.

One of the problems with PC seems to be, if I have read what the nurses have written, it's complexity so that research is still not as successful as with other cancers?

Like everyone else here I hope for a cure to be found sooner rather than later.
Catherine

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

Re: New Treatments

Postby Wife&Mum » Sun Jul 10, 2016 4:01 pm

Hi DG,

I agree that the Medical Innovations Bill sounds like a good way forward. [I'd not heard of it before Didge gave the heads up - thanks Didge! ]. But it will probably come too late for many who might benefit from it.

Tumour profiling - I came across a new website/service yesterday:
PRECISION-Panc
"The overall aim of PRECISION-Panc is to speed up scientific discovery in order to improve the survival rates of patients with pancreatic cancer."
http://www.precisionpanc.org/

....it may be of use. I've just contacted them for more info. PCUK is a partner. They're based in Scotland.

Writing to my MP - Hubby and I are away at the moment but we've decided that instead of writing we would see our MP at one of his surgeries. I'll post once we've done this. I've also been thinking of attending an APPG meeting with hubby.

As they say in the USA: NEGU (Never Ever Give Up)

xx

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: New Treatments

Postby Dandygal76 » Sun Jul 10, 2016 4:08 pm

If you want tumour profiling, this is where my research has led me... http://foundationone.com/

PCUK gave me a different company (not based on their own recommendations but because they know a PC patient managed to get his tumour profile done there) but I have had many discussions with American PC friends and this place is $6000 cheaper and produces better reports and more markers identified. Some had used both companies.

As I have stated on my PC facebook page.... "You need to remember though that this is my own research and discussions with people. Please do your own research and due diligence because I am no medical expert. It is sometimes like the blind leading the blind trying to untangle all the options. With the 'right' mutations they have found breast cancer drugs etc that can help but there are no guarantees."

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: New Treatments

Postby Dandygal76 » Mon Jul 11, 2016 9:02 am

Just read the APPG Pancreatic Research report and this is shocking!....

In particular, the Department of Health needs to review its own contribution to pancreatic
cancer research, increasing substantially its current contribution of just £0.7 million, looking to at
least match Cancer Research UK’s stated goal of doubling or trebling its annual investment in the
next spending round.

700k - that is nothing.
Last edited by Dandygal76 on Mon Jul 11, 2016 2:34 pm, edited 1 time in total.

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: New Treatments

Postby Dandygal76 » Mon Jul 11, 2016 9:05 am

W&M I am going to FOI the minutes of the APPG. I think it would be an interesting read and will copy them and send if you want them. Just ask PCUK for my e-mail address.

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

Re: New Treatments

Postby Wife&Mum » Mon Jul 11, 2016 9:16 am

DG, I think the minutes are already in the public domain so no need to FOI them.
I'll check and post the link here if I'm correct.
W&M xx

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: New Treatments

Postby Dandygal76 » Mon Jul 11, 2016 9:18 am


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

Re: New Treatments

Postby Wife&Mum » Mon Jul 11, 2016 9:23 am

Found them on the APPG website....

Latest published minutes (March 2016):
http://www.pancanappg.org.uk/appg-meeti ... #more-8624

Page with links to earlier minutes
http://www.pancanappg.org.uk/news-and-updates/

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: New Treatments

Postby Dandygal76 » Mon Jul 11, 2016 9:29 am

But here is the problem... I bet the trial next year excludes all with PC right now. Either previous Whipples, chemo or previous trial.

The trial dad is currently on excludes everything. No supplements (I get round that if they are natural and in food), no nanoknife and I have lined up for mistletoe therapy (but no on the trial).

Why can someone not just get a new drug and throw everything at it. Nanoknife, mistletoe, document whatever supplements you take, plus chemo and then add in a trial drug for good measure.

Someone has said in one thread that people seem to do better when they take a more holistic view of treatments. Well, why can no one trial a trial outside of the norm. It would be an interesting trial... throw everything at it and see the results. I think it would do better than most of the current trials.

And... if the trials ban all this stuff... it means they can make a difference.
Last edited by Dandygal76 on Mon Jul 11, 2016 12:54 pm, edited 3 times in total.

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: New Treatments

Postby Dandygal76 » Mon Jul 11, 2016 9:30 am

Thanks W&M... our messages crossed over. I will take a look later today. x

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

Re: New Treatments

Postby Wife&Mum » Mon Jul 11, 2016 9:38 am

Don't waste your energy on the Southampton drug. That page dates from 2013 and this is what CRUK said more recently about the treatment:

" conclusion Chi Lob 7/4 is a safe drug and it did activate the immune system but in this trial it did not improve the cancer of anyone who took part. The researchers think that in the future it should be tested in combination with chemotherapy or another type of monoclonal antibody."
Read more at http://www.cancerresearchuk.org/about-c ... pMJKKij.99

I know, so much out there that's disappointing/confusing/frustrating/downright upsetting

xx

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: New Treatments

Postby Dandygal76 » Mon Jul 11, 2016 9:50 am

I did not look at the date... I googled "pancreatic cancer news" on the filter of last 24 hours. I will double check next time - thank you. x

boa
Posts: 128
Joined: Thu Jul 09, 2015 12:13 pm

Re: New Treatments

Postby boa » Mon Jul 11, 2016 12:48 pm

HI DG
There is one comment above that I am concerned about. You say that PCUK have said on a thread that 'people seem to do better when they take control and do extra'. I don't think anyone ever said that because on what basis would they make that judgement. My husband was diagnosed early and was able to have a Whipple. He was judged to be clear of cancer after surgery but was put on adjuvant gemcitabine. As early as two months after surgery his blood levels were hinting at a return and a CT scan confirmed that. He then was given folfirinox which initially was said to be controlling the cancer but the day after he was told this he was hospitalised and died six weeks later. Because the cancer was diagnosed early we were very hopeful. Twice we did extra 'things' which was to pay for an initial CT scan when the NHS could not do one quickly and later for a colonoscopy required to confirm chemo could go ahead the following week. He pushed himself to recover quickly from the operation and followed all the medical advice. From diagnosis to death was exactly ten months. I thought that we were in control. We had to accept that he had a very aggressive form of cancer.
Catherine