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

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Posts: 126
Joined: Sat Jun 09, 2018 4:17 pm

Re: This cruel disease

Postby toodotty » Sun Nov 04, 2018 10:06 am

Thank you both for signing the petition and passing it on. No wonder the survival rates are so terrible when 70% of people receive no treatment at all.
Keithkerry, you are at the stage I am rapidly approaching, what happens when I get past round 12 of Folfirinox? Having had to fight so hard to get treatment I am terrified of falling off the radar and not getting treatment quickly the second time around if the disease should come back aggressively again. I do feel perhaps because most people died before this stage that many Oncologists hit a bit of an impasse at this point because they do not have the requisite experience of PC. I am considering changing to a specialist PC centre who might be more up with the latest thinking, though this will be horribly disruptive if I have to travel to say Leeds for treatment. I am discussing this with my GP on Tuesday to see her thoughts.
And yes Kate I am in active dialogue with Dr Donoway in the US. What I like about him is that he views the disease holistically and looks to treat the whole body not just the pancreas. The Y-90 treatment for multiple liver lesions sounds really promising, and his views on diet and exercise resonates completely. I have learnt so much from his posts and his compassion towards other sufferers, I am really impressed by this. I will be posting something on the Nanoknife warriors website about my decision making process, there is still a possibility of the closed procedure in London after Round 12 but feel that this may not be the best option now.
And for the publicity, me brave, no I am just angry! I am horrified that this is the best that we can expect from the NHS. People are dying due to administrative errors, ignorance of condition by the medical profession and the false belief by our politicians that we are at the forefront of cancer treatment in the UK. Poppy-cock, we are about 5 years behind everyone else and falling even more behind with NICE being our silent enemy too.
There is still hope for all of us, but we are not likely to find it in this country at the moment.

Erika (toodotty)

Posts: 33
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Sun Nov 04, 2018 7:22 pm

We are fortunate that our hospital is the regional centre for Pancreatic Cancer (and other Cancers). It's on our doorstep (my Wife and I have worked there for many years in admin roles). I do know that our MDT that covers PC meets every week to follow up on all patients and to make sure that they are all having the same level of treatment, depending on staging and suitability (or not) for surgery.

I think that if we can just get my Daughter's CA19-9 measured regularly she will stop fretting so much. She has no symptoms at all. Her hair is growing back rapidly and she has a voracious appetite. But she is constantly worrying that the cancer is going to wake up and start spreading again. Just having that one piece of monitoring done will make a big difference to how much she can enjoy this treatment break.

What a nightmare. So much to think about for the future. Most of it I don't want to think about until I'm forced to. For now I have to be the rock that my Daughter and my Grandchildren can look to for help and encouragement.

I can tell you as a long time employee that the NHS is indeed a mess in some ways, but it's all we've got at the moment. I do see so much good done in the hospital that I work in. But there is never enough medical staff and nothing like enough admin staff to run all of the theatres, wards and clinics. It is demoralising for the staff to have to see long waiting lists and to have unhappy patients.

A lot of people that work for the NHS really do care immensely. What the NHS badly needs is much larger investment and a good shake up of the senior management.