Anyone know about new trials for pancreatic cancer ????

[yorkiemom]

My dad was diagnosed at the start of the year, and is currently having chemo, and doing ok.
However I have been reading in the newspaper over the last few days about some new radical treatment. (not fully sure but a vaccine called GV1001, which works by teaching immune cells to recognise certain proteins made by pancreatic cancer cells. The immune cells can then find the pancreatic cancer cells and kill them.)
Sounds wonderfully simple - ha bloody ha !
Just wondered if anyone out there had any idea's .
Many thanks

Have you looked at this page?

Thanks emma, did have a look at that, I think we should mention it to dad's consultant.
What do you think, do you know anything more ???

Sorry to hear about your dad yorkiemum. If I have read this correctly he may not be eligible for the telovac trial because he has had chemo, but I can't see that there would be any harm in mentioning it to his consultant.

You probably know this and I don't want to sound too depressing, but if he is accepted onto the trial he may be assigned as a negative control and not receive the vaccine anyway; if he did receive it it may not make much difference. The researchers are aiming for a 10% increase in length of life (which probably means this is their most optimitic guess).

Hope he is doing well at the moment.

another story re: pancreatic cancer treatment - only few patients suitable though

Thanks LeigeAndLief, and bundle, am beginning to think its a bad idea to google these treatments, as now feel totally depressed about my lovely dads chances. It has spread to his liver also.
Ifind it impossible to believe that he may not live past five years, and although I have fell out with god a bit, I am praying that my dads is in the good percentage.
My youngest sister is only thirteen and really needs my dad for much longer.

Am so sorry to turn this into a moan, thank you so much for taking the time to respond to me xxx

cancer is am absolute bastard, and my heart goes out to anyone who is affected.
xxx

Yorkiemum,

The trials are worth mentioning to your Dad's consultant, but it is unlikely that he will be eligible or gain much benefit in terms of survival or improvement in quality of life. I hope that he responds well to his current chemo and that his quality of life remains good enough for you to enjoy time together.

I wish you well. You may not feel that you need it at present, but Macmillan nurses provide excellent support for families/carers and patients with cancer.

Thanks emma, we do have a lovely macmillan nurse, she is very supportive to all of us.

I think last might was just a bad one, but I had a good cry and today feel much better.

We are going to see dads consultant this morning, so will perhaps mention it ???

Dads third chemo this afternoon, so fingers crossed.

Thanks again xx

Yorkie in reality the clinical trials tend to he helpful for extending life rather than looking at a complete cure. In addition the early stage trails are going to be of more help for the people in the future whi get the cancer, rather than then people who have it now IYSWIM.

I used to work in clinical trials in drug safety and I would have to think long and hard before I encouraged dh to take part in a drug trial that is phase 2 or less. At the moment dh's consultant is trying a second line treatment with dh Oxaliplatin and capecytabine, which is noverl and is not licenecd for use in pancreatic patients, but both drugs are licenced for other tumours.

But this is looking to extend his life, and give him better quality of life than an outsright cure.

Being positive for your father is vital for your benefit and aslo his. We have found that having lots of short term goals is helpful, but we have had to be realistic. We plan for the worst and hope for the best. I don't goggle, even though this used to be part of my job. It simply isn't helpful.

I hope that you father's chemo goes well.

Thanks martianbishop, I think sometimes you just grasp at straws!!
Hows your dh doing at the moment, is he feeling ok ???
I really appreciate you taking the time to reply to me, thanls again.
I did mention generally trials at dads meeting with his consultant, he looks at me as if "bloody interfering daughter, I wish he'd leave her at home !!"
I'm not going to google ever again its far too depressing.
Dad had his third lot of chemo today, and seems to be doing ok thanks - so fingers crossed xx

He feels 'fragile' and tired a lot of the time. I'm not sure if this is due to tumour growth or the fact that he is off steroids atm.

He also needs to go into Hosptal on Monday for a few days to have fluid tapped from his lung cavity, but that should help his breathing.

He's as good as he can be, given the circumstances, and the fact that he 'should' have died 10 months ago (statistically speaking at any rate)

I think these statistics are really scary, and I hope a loads of rubbish !!!

I'm glad your dh is beating the "statistics".
I hope it goes well on monday.
Could he go back on the steriods at all ???

I think its fantastic how you cope, are you positive all the time, or if you have bad days how do you cope? - Sorry if thats too personnal a question, don't answer.

Thanks for replying to me, I hope your dh has a good day todayxx

Bad days are bad, but we just sort of ride them out.

TBH most of the time we try to push all of this to the back of our minds. We know he is going to die, we are not 'in denial', but you can't live in that minute all the time, it is just too exhausting. And in the end if we only have a limited amount of time, it would be stupid to spend it all crying and being upset.

I'm not sure if that is helpful or just sounds glib

We are as positive as we can be, set ourselves lots of short etrm goals, the next will be the Mile for Sports relief on Sunday, we have a wheelchair in case he can't walk it.

After that we have w weekend in Centre parcs booked. Things like that help us.

Yorkiemum,

What you are doing and the way you are feeling are entirely normal- in medical terms we would call it 'bargaining' before you reach a stage of 'acceptance' of your Dad's predicament. I think every relative of every person affected by cancer hopes that if they search hard enough, that they will find a cure. It is especially hard for families of people with poorer prognoses, and I'm sure your Dad's consultant has been there with several families before, so don't feel embarrassed.

I would echo what Martianbishop says- set short term goals, take each day one at a time, don't focus on statistics and above all make sure the QUALITY of the time you all spend together as a family is worthwhile. Is there anything that your Dad has always wanted to do or always wanted to go? Help him to achieve the things that are important to him.

Above, all look after yourself. Its OK to have shit days and its OK to cry and feel helpless. Stay away from Google! Do you have a good relationship with your or your Dad's GP that you can discuss things with?

and the goals don't need to be massive 'Go round the world' ones either. Just the little every day things that you all enjoy. Today Dh and i have a nive lunch from M and S and will sit down, while the kids are in school and watch the lasy episode of serier one of the Sopranos, which we've just 'got into'.

Just nice little things that we can do.

Having a take away pizza with the kids and playing Uno, that sort of thing

Thanks MB and emma, sorry for sounding like such a moaner!
Most of the time I can be quiet positive, and I never get upset in front of my dad. I think perhaps I am still in denial, I know he's not got years and years but I cannot imagine a time without him here.
Today we have had a lovely day, its one of my sisters 21st birthday (i have 6 sisters, and 2 brothers, we are very lucky to all be close, and have each other)
Dad did come downstairs to see her blow out the candles, but just felt so tired went back to bed soon afterwards.
mb I am glad you have lovely things to look forward to, and you seem to be coping amazingly well, and are an inspiration to me.
I have booked a big family holiday in Devon this August, and dad says he is really looking forward to that, hopefully by then he minght be feeling much better.
Thank you both again for your wonderful words of support, it does mean so much.
I promise not to google again.
Wishing you both lovely weekends xxx

emma, forgot to say my dad and I share the same gp. When I saw him after dad's cancer had been confirmed he told me he still went home at night and thought about my dad, and could'nt believe that nothing showed up on a earlier scan.
He has put me on some anti-depressants, so on really bad days I still have the will to get out of bed- just !!!
Not sure if they work, and hate taking them, but scared to stop in case I feel so bad again.
Doctor says we will re-assess in 4 months.

Just a quick message for you, yorkiemom; my dad has pancreatic cancer too, and is currently on his 4th lot of chemo. He's skinny and tired, but he's still here despite a less than optimistic diagnosis 15 months ago.
Definitely agree with what others say - it helps to take one day at a time rather than worrying about what will happen in months' / years' time.
Thinking of you.

Thanks bottersnike, I am really going to try and just take it a day at a time.
Some days are just really hard though, my little sister (13) got really upset last night when I visited, just needed a good cry I think !!
I am so sorry to hear your dad has it too, hows he doing on his chemo ?
I wish you all the best and hope your dad continues to do well.xx

Chemo is getting harder, I think. He started on 3 week courses, and is now down to a lower dose for 2 weeks.
He has found that it really messes up his digestion after about a week or so and has also affected his hands and feet ( they are red and swollen ).
We're hoping that it's doing its job, and prolonging his life, so for now it's worth it. When he's not on the chemo, he's not too bad - still able to potter around the house doing DIY and annoying my mum by not tidying up after himself!
I'm guessing from your name that you're in Yorkshire somewhere? We're in York.

Hi bottersnike
We are in the midlands, name is York !!!!!
How strange my sister spent her 21st birthday last weekend in York with 2 of my other sisters !!!
My dad's chemo is once a week for seven weeks then a week on a week off. He is'nt very hungry most of the time, but is trying to eat anyway.
Hope you don't mind me asking but has your dad lost lots of weight? My dad seems to be getting thinner by the day. I find this really hard as he has always been "rounded"!
My dad is tired alot, is yours ? Although I don't think the morphine helps.
Are they not able to give your dad anythink for his hands and feet ? They did mention swollen ankles to my dad, but at the moment they are ok.

I really hope your dad continues to do well ,and fights this bloody cancer.

Fingers crossed that both our dad's beat the statistics.
Thanks you so much for taking the time to reply to me.
Love and best wishes to youxx

Hi again.

I'm also Midlands-based- where is your Dad being treated?

Hope you're having a more positive day.

Hi emma, my dad is being treated at Sandwell.
His consultant is only "borrowed" one day a week though from the QE.
Have to be honest though all the nursing staff at Sandwell have been brilliant, especially our lovely macmillian nurse.

Dad had a good day yesterday, so I think we all feel better today.
Something hit me last night though, my dad is never going to have his lovely round face (and body!!) again is he ???
It's heartbreaking when I hug him, and he feels so thin.
I think I have to be realistic, and although I can hope that the chemo buys him lots of time with us, he's never going to be how he was before.
Thanks for your reply, today is going to be better!

I'm glad he's getting good care. I'm pretty familiar with the QEH docs, as I trained in Birmingham, and he's in excellent hands.

It must be really hard to accept that the person you have known and loved for so long is never going to be the same again, and the physical changes can be shocking. It sounds as though you are being entirely realistic about what the future may hold.

All the best. Keep in touch as things progress. Always here if you need support.

Thank you so much emma, I really appreciate your supportand will keep you posted.x

Hi yorkiemom,

Hope your dad is having another good day today.
The physical changes can be really shocking, can't they? My dad always used to be really solidly built, and now he's a little weed like me! Tumours are really hungry, and consume masses of energy to fuel their growth, nasty little things.
He has been given some vitamin B6 for his hands and feet, but mostly it's the chemo that is doing this. Horrible stuff, but it's all we have.
The morphine / oxycontin seems to work well; it means he can fall asleep at any minute, but at least it takes away the pain.
Take care
xxx