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

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pennylane
Posts: 2
Joined: Thu Apr 23, 2015 9:31 pm

New member... wish I knew what was coming

Postby pennylane » Fri May 22, 2015 3:08 pm

Hi everyone, I've been reading your incredibly supportive messages for a while now and felt ready to post myself. My mum was diagnosed with inoperable stage 4 pancreatic cancer with spread to the liver. She is under 60. After a time on Folforinox, to which she reacted badly and had no response, she is now on Gemcitabine. I can see how much better it suits her and it is having more response but I don't understand what the doctors have said about it. It might prolong her life, is that right? And might give her some quality of life? She has grandchildren it would be wonderful to spend some time with. But as far as I understand it, it won't cure it, merely stop its growth in best case scenario? I know that these are unanswerable questions and the medical team have been great at the factual information. I just don't feel like I can discuss this with my parents. I'm a natural optimist and my husband is trying to prepare me for the worst, but I am not ready to give up. Thank you for reading. X

Fifi

Re: New member... wish I knew what was coming

Postby Fifi » Fri May 22, 2015 3:35 pm

Hi Pennylane,

Pleased you feel able to post. I hope feel better for doing so. You will get lots of support on here and very good advice.

Sorry to read about your Mum. My Dad was diagnosed February 2014 with Stage 4 spread to the Liver. Stage 4 means the cancer is inoperable, but with chemo she should be able to have some good quality of life. Dad didn't tolerate Folfox at all, and it didn't do anything for him. He got on very well with Gemcitibine. It shrank the tumors off the liver very well, and at one point, it shrank off the pancreas, which is unusual. Don't be alarmed if some results they say 'no change'. That is a good result with this cancer.

My advice to you is to not give up. Just because it is stage 4, doesn't mean you cannot fight to gain more time. Fight with all you've got. I know it is hard, very hard, but I would say to try not to let your Mum see you cry. Be hard for her. When she's down, just listen to her and tell her you will fight with her. If they see us upset, they will be more upset.
If you go to appointments with your Mum, I would get yourself a little book and write down questions in there. Any questions you or your mum have, write them down and ask them. Write the answers in, so you can go back and look. Please don't be scared to ask. Some Oncologist don't like to give too much detail, but it is your right to ask. I know it is sometimes hard to chase appointments, but if you can, then I would try. Some hospitals take far too long.

How is your mum coping with eating? Is she taking Creon?

I really want to help you more. I can feel your sadness. If you have any questions at all, then please ask here, someone will help you I promise.

Leila xxx

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: New member... wish I knew what was coming

Postby Sueoliver » Fri May 22, 2015 9:53 pm

I am sorry to hear about your Mum. You will get support on this forum there are some knowledgeable people on here who will offer support!
I don't think anyone knows what's coming everyone is different! All you can do is support your Mum and be there for her. This isn't an easy journey so your support will be invaluable. Ask the doctors and nurses questions if you want to and also the nurses on this forum.
My Mum was diagnosed 1 year ago and is 77. She has been on folfirinox and coped well but she has had a few ups and downs recently! We were told it would give her some quality of life and maybe keep the cancer at bay!
You can read my story on here "mums diagnosis" but everyone is different!
Look after yourself as well and try and stay strong.
Sue x

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: New member... wish I knew what was coming

Postby MSH » Fri May 22, 2015 11:41 pm

Hi Penny,

This is a really bad cancer to get, the prognosis is awful and as far as we know the only chance of a cure is from surgery. Sadly when most people are diagnosed this isn't possible. That leaves chemotherapy as the best form of treatment, but with this the aim isn't to cure but to ease the symptoms and to prolong life. The unanswerable question is how well your Mum will respond to the chemo.

I would suggest you do as much as possible with your Mum when she feels well, and try and discuss things with your parents. The Macmillan nurse should help.

Here's hoping your Mum gets a good response.

Mark

pennylane
Posts: 2
Joined: Thu Apr 23, 2015 9:31 pm

Re: New member... wish I knew what was coming

Postby pennylane » Sun May 31, 2015 8:42 pm

Thank you everyone for your replies. You're entirely right that it is important to fight for time. I have thought about that a lot and it has really helped me. Thank you again x