Treatment for stage 4

Hi Antonia and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and I'm sorry to read that you have the worry that your mum's treatment might not be working.

Although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' your post back to the top of the discussion list again.

I can see that you also posted this in the Ask A Nurse section of the online community and have had a reply from one of the nurses. In case you haven't seen it, clicking here will take you straight there.

While you're waiting for replies, it would be great if you could put something about your mum's diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi,

Thanks for your advice, I have added a couple of lines to my profile. I know my way around the pancreatic cancer charity forum but still learning my way round here!

Sorry to hear about your mum. 
My mum has been recently diagnosed with stage 4 pancreatic cancer she’s only 56. We are all struggling to come to terms with this. Currently in limbo as we are waiting on an appointment from the oncologist to start treatment as they have advised it would be chemo but the waiting game for the appointment is very stressful. 

Hi, sorry that you are also dealing with your mum's pancreatic cancer diagnosis. I knew my mum was very ill 14 months ago, diagnosed 11 months ago, and honestly I'm still struggling to come to terms with it. I can have a few days of being somewhat level headed, but i'm mostly still angry about the situation. 

I would definitely recommend calling the pancreatic cancer charity. Nurses answer your call and they so knowledgeable  and friendly. When mum was initially given gemcitabine-abraxane chemo I had over an hour on the phone with a nurse who talked me through what side effects each drug would cause. I ring them before mum has scans etc and they coach me through what questions to ask. 

Before your mum starts chemo try and keep her as well as possible. Its unfortunately very easy with pancreatic cancer to lose weight, and the healthier your mum is the better prepared she will be for treatment.  

Wishing you and your mum the best. 

Thanks for your reply know exactly how you feel.

Mcmillian nurse is due to phone my mum tomorrow so hopefully get some answers she’s not a great day been so sick struggling to keep anything down.

will have a look into the pancreatic cancer charity.

thanks again. 

take care of yourself and your mum

Hi Antonia, I am 60 and I have to decided on my treatment choice after seeing the oncologist yesterday. It must be tough looking after your mum and I feel bd they my daughter will have the same responsibilities soon. I wonder if the chemo is worth it, and I am scared , how has your mum tolerated it? Is she able to get out still for walks between sessions? Keep up the good support for her xx

Hi Supertrouper,

Sorry you are battling pancreatic cancer. 

The last 11 months have been hell but my mum has tolerated it reasonably well and somehow still has a smile on her face everyday. 

She started on gemcitabine abraxane, she was not strong enough to be offered folfirinox. Aside from the cancer she is healthy but her main symptoms before diagnosis was pain and weight loss so the consultant thought dual chemo would be best.  The first few cycles we took her to urgent care as her temperature spiked and early signs of infections were picked up in her bloods so she was given antibiotics. They reduced the chemo strength by 25% and she's never had that issue again. Her main side effects have been fatigue and pain, though her pain is probably caused by the tumour. She has only vomited once and she's up to I think 26 chemo treatments, nausea is reasonably well managed with medication. The first few treatments were very tough but as the chemo started working and the tumour shrunk, they became easier and you could see mum getting stronger. 

After chemo she needs a good few days in bed resting, towards the end of the week is able to be up and about, we go on walks and she can socialise with friends. 

She was swapped to FOLFOX in November and after 4 treatments have learnt that it is not working and her mets have grown slightly. That chemo took her about 7 days to recover but is only given every fortnight which helps. She still manages to have good days and we had a normal-ish christmas. Not sure what other treatments will be offered for mum, but she has said if they offer FOLFIRI chemo she's happy to try it

I've found it tough looking after mum but its been a privilege to be able to spend so much time with her this year as I know many don't get that luxury. Plus i have no control over what the cancer is doing, or if the chemo is working etc so I've thrown myself in to helping her in any other way possible with looking after medicine, appointments, cooking etc, so she can focus on herself. Half the battle with this is staying mentally strong.

Hope that wasn't too rambling or overwhelming, I know you will have a million different things on your mind at the moment. 

Wishing you all the best. X