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

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Dee123
Posts: 2
Joined: Wed Aug 08, 2018 7:21 pm

My mum - Stage 4 PC with liver mets

Postby Dee123 » Fri Aug 10, 2018 12:52 pm

Hi everyone,

I am new here but I have been reading for a while. I thought I would log my Mum's journey on here because I have spent hours reading absolutely everything I can about Pancreatic Cancer and I know how helpful it is to find people with similar stories, even though I know that everyone is different.

My mum is age 66. Here is her timeline:

April 2018 - stomach pain that won't go away, above the naval and just under the ribs.

May 2018 - doctors suspect a stomach ulcer but request a gastroscopy to make sure.

Early June 2018 - during the gastroscopy, the doctor says it is definitely not a stomach ulcer but he has identified tumours in the duodenum which he believes are metastatic. He takes a biopsy and refers her for a CT scan.

Mid June 2018 - CT scan showed something on the head of the pancreas and on the liver. Liver biopsy booked in.

Early July 2018 - Liver biopsy.

9 July 2018 - diagnosed with Stage 4 Metastatic Pancreatic Adenocarcinoma which includes a tumour on the head of the pancreas that is pushing on the duodenum (hence why the doctor saw it during the gastroscopy) with liver mets. Confirmed Stage 4 terminal with no option for surgery. Treatment will only extend life. No cure.

10 July 2018 - signed up for a clinical trial (HALO pegph20) but they need to check she has the right tumour markers to be eligible - they use the liver biopsy cells to check - results take 3 weeks.

3 August 2018 - Biopsy results for clinical trial are inconclusive, another biopsy required. Time is ticking away. Doctor recommends starting chemotherapy instead.

It was decided that, as she has ulcerative colitis, Gemcitabane and paclitaxel albumin (Abraxane) is to be used rather than Folfirinox and she will start the chemotheraphy next week. We received a phonecall today that the chemotheraphy is to be brought forward a couple of days due to NHS guidelines that state a patient must be treated within 62 days of GP urgent suspected cancer referral. The 62 days are up on Monday so that is when it has to start.

I will keep you updated. Has anyone got experience with this type of chemotherapy?

Any support/help/tips would be appreciated.

Sending everyone reading this lots of love and hugs because we all need it!

Dee x

Veema
Posts: 497
Joined: Mon Feb 02, 2015 5:35 pm

Re: My mum - Stage 4 PC with liver mets

Postby Veema » Sat Aug 11, 2018 10:32 am

Hi Dee, so sorry to hear about your mum, but you've come to the right place for support.

I just wanted to make sure you are away that your mum can claim attendance allowance, which is not means tested. She may not feel she needs this, but it's something she is entitled to and will help with parking costs, maybe someone to help out in the garden or the house etc. She will also be entitled to a blue badge.

I would also make sure she is referred to the palliative care team, whether thats Macmillan or whatever...it was our hospice that provided palliative care in the community. Again, even if she doesn't feel like she needs this now, its best to have the referral in place if and when she does. Things can change pretty quickly with this disease and it's best to have everything you can at your disposal. They're a great help liaising with other medical professionals and at chasing things up. We didn't find out about this until it was too late for us.

My husband had folfirinox, so can't help with the regime your mum is going to have, but abraxane is supposed to work well. You can only see how she tolerates it...hopefully it won't be too hard for her.

Keep posting, it helps.

Vx

toodotty
Posts: 70
Joined: Sat Jun 09, 2018 3:17 pm

Re: My mum - Stage 4 PC with liver mets

Postby toodotty » Sun Aug 12, 2018 12:30 pm

Hi Dee,
Sorry to hear about your mum, as you have found there is little in the way of good news when it comes to Pancreatic Cancer. It is really important that your mum does not give up HOPE, despite what the medics say. There are people who live successfully for 2, 3 or 4 years with this cancer but she will have to be determined, stubborn and sometimes bloody minded to get the treatment that will help her. With regard the chemo regime, some Oncologists prefer to start with Gemcitabane but may move onto a combo of other drugs as part of a maintenance regime. Folfirinox isn't for everyone, it only works in about 30% of people and is very aggressive, so often is not appropriate.
Saying that the chemo starting working for me from the first round, and I feel better now than I have in months. Keep positive!
Sending virtual hugs to you both,
toodotty

Dee123
Posts: 2
Joined: Wed Aug 08, 2018 7:21 pm

Re: My mum - Stage 4 PC with liver mets

Postby Dee123 » Tue Aug 14, 2018 9:00 pm

Thanks for your messages. They are a great help. We will look into the attendance allowance and the palliative care team and we will not give up hope. I have been researching all the success stories. I am glad you are feeling better toodotty!

My mum had her first day of chemo yesterday. Today she is very tired and nauseous and has hardly eaten anything.

She has anti sickness injected with the chemo and she has anti sickness medicine which she has been told to have with food.

Does anyone have any tips for what helps with nausea?

Also I have read a lot of people talking about Creon. When does this get prescribed? I think it would really help my mum. She has lost (and is losing) weight.

Hopefully she will feel slightly better tomorrow. The doctors recommended for her to keep moving/exercise but she hasn't felt like it today.

We are taking it day by day and hope for a better tomorrow. I hope everyone reading this is feeling ok. Tomorrow is a new day.

Dee x

Mrshappy
Posts: 8
Joined: Thu Apr 12, 2018 10:33 am

Re: My mum - Stage 4 PC with liver mets

Postby Mrshappy » Wed Aug 15, 2018 8:00 am

Hi Dee,
So sorry to hear about your mum. My dad is 68 with stage 3 locally advanced pc (so also inoperable). He was on folfirinox but only had 2 rounds before deciding it was just too aggressive (ended up in hospital both times with neurotrophic sepsis). He is now waiting to start gemcitabine in a few weeks....

As to nausea please do ask for different anti sickness meds. We really had to push to get stronger ones for my dad after he was so nauseous he became dehydrated and we ended up in a&e. There are many different ones out there and some will be more effective. Does your mum have a specialist nurse you can contact? Or a chemo helpline??

As to creon my dad was given it straight away as pc affects the enzymes usually used to digest food. His main symptom was diarrhea and taking more creon with his food has almost got rid of this. I am not sure if it depends where the pc is (head or tail of the pancreas) but again, something else to ask the nurses. Do use the helpline on here too as the nurses on here are amazing.

I hope your mum feels a little better from the chemo soon. It's an incredibly rough journey so I hope she gets some relief soon.

Sending strength and love,
Claire x

Veema
Posts: 497
Joined: Mon Feb 02, 2015 5:35 pm

Re: My mum - Stage 4 PC with liver mets

Postby Veema » Wed Aug 15, 2018 8:31 am

Yes, Dee, she will definitely need creon as the tumour is in the head of the pancreas. This is the area that deals with digestive enzyme production and it is likely that will be compromised, creon is a replacement for this. Ask the GP or her specialist for a prescription.

Vx

Marmalade
Posts: 58
Joined: Thu Jul 06, 2017 3:29 pm

Re: My mum - Stage 4 PC with liver mets

Postby Marmalade » Wed Aug 15, 2018 5:41 pm

As veema says but would also speak to the nurses on here about both topics. Most doctors and the nutritionalist we spoke to did not know the correct dose of Creon (you can't overdose) and under prescribed it which resulted in bad tummy pain and indigestion. My husband had cancer in the tail and still needed Creon.

M xx

PCUK Nurse Dianne
Posts: 268
Joined: Tue Aug 14, 2012 2:29 pm

Re: My mum - Stage 4 PC with liver mets

Postby PCUK Nurse Dianne » Fri Aug 17, 2018 9:05 am

Good morning Dee,

Welcome to the forum, and as we find, the great forum family are already responding to you. Dee we can give you some information about the chemotherapy treatments, and also managing symptoms, and of course the pancreatic enzymes.

Please feel free to touch base with us today if it is convenient. Alternatively we can email you separately to the forum with some information before the end of the day.

Kind regards,

Dianne
Pancreatic Cancer Specialist Nurse
Pancreatic Cancer Uk
Support line: 0808 801 0707
Email: nurse@pancreaticcancer.org.uk

toodotty
Posts: 70
Joined: Sat Jun 09, 2018 3:17 pm

Re: My mum - Stage 4 PC with liver mets

Postby toodotty » Fri Aug 17, 2018 10:05 am

Hi Dee,
Your mum will definitely need Creon and you will need to experiment with the amount. Don't be scared of it, the worse that is likely to happen is that she will get an itchy anus if using too much. She also will need more with fats and meat, don't be scared of 80,000. She shouldn't need it for fruit, I start the day with a bowl of cherries to kick start the digestion, sets me up for second breakfast. She may also need a PPI (proton pump inhibitor - controls acid levels in stomach - Omeprazole is what I have), this works with CREON and helped with controlling the swing from diarrhoea to constipation that I struggled with.
Re nausea, there should be meds to help with this. If she cannot eat then ask for build up drinks instead to keep her going whilst she gets used to the chemo.

Good luck,

toodotty