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StPancreas
Posts: 3
Joined: Tue Aug 13, 2019 10:49 pm

Chemo for the older patient

Postby StPancreas » Tue Aug 20, 2019 9:13 pm

HI , I've been lurking and much as I wish I didn't need to be here , sadly I do. You do seem a nice bunch though.

My Mum has been diagnosed with PC , which has spread to the liver. The consultation appointment was very short, but basically said no treatment just palliative care. That was a shock - I thought I had planned for worst case scenario of inoperable but chemo. It took since last October when she first went to GP about unexplained weight loss.

I have spoken to a PCUK nurse about this, as the consultant had not met her before this appointment and seems to base the decision solely on age . She is a very active 81 year old, living independently. She has no other medical conditions, no memory issues and takes no medication. Although she has lost weight she had plenty to play with and is still 'normal' weight. She is now on Creon too , which is helping improve diarrhoea. She is eating loads on a build up diet now. Main symptom was fatigue but that is definitely better now she is eating more. Currently no pain.

I've read that Chemo can be tough and may not add very long , but I would like her to have the information to make her own decision. After several phone calls they have agreed we can see the oncologist,( but that may be another couple of weeks).

Meanwhile I was wondering if anyone has experience of chemo in the older person, and how tough it was for them and whether they/you felt it was worthwhile .

The upside of no treatment ( and I am scraping the barrel for positives) is that there will not be loads of appointment to work around and we can do a few more nice things while she is still well.

Thanks in advance. I have learned so much from this forum already.

Jo

PCUK Nurse Jeni
Posts: 1078
Joined: Mon Jun 14, 2010 1:30 pm

Re: Chemo for the older patient

Postby PCUK Nurse Jeni » Thu Aug 22, 2019 11:15 am

Hi StPancreas,

Thanks for your post, and welcome to the forums - as you say, not a place you wish to be most likely. I hope that you find the forums helpful.

I am sorry to hear about your mum and the recent diagnosis of pancreatic cancer. It does seem that she is not suffering unduly from symptoms of the disease, which is positive. And its great to hear that she is so fit also.

Chemotherapy should not be given based on a persons age, but on their "fitness" level - this isn't athleticism as such, but fitness to carry out day to day living. It is called the World health Organisation Performance status - or WHO-PS for shot. Other derivatives of this might be used also, but basically, I outline this below:

Grade 0 = Fully active, able to carry on all pre-disease performance without restriction.
Grade 1 = Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g. light house work, office work.
Grade 2 = Ambulatory and capable of all self-care but unable to carry out any work activities. Up and about more than 50% of waking hours.
Grade 3 = Capable of only limited self-care, confined to bed or chair more than 50% of waking hours.
Grade 4 = Completely disabled, cannot carry on any self-care. Totally confined to bed or chair.

As you can imagine, there might be folk considerably younger who might have a poor PS due to chronic illness etc.... So, using age is not something which is done generally. There is a thought that those 80 and above might not be fit enough for chemo as generally, you tend to see more co-morbidities in this age group (other illnesses). However, I note, this does not apply to your mum. And also, if her bloods show good kidney function, there should be no reason for her not to be considered for chemo.

She would probably be offered a single agent chemo (1 drug). This would likely to be gemcitabine - https://www.pancreaticcancer.org.uk/inf ... ne-gemzar/.

Generally, this is tolerated reasonably well - of course there will be side effects but most of these are generally manageable. These will be graded at each pre-chemo appointment and necessary changes made. Such as change of medications or reduction of the dose. In addition, as it is given once a week for 3 weeks, your mum will be able to discuss any side effects at the chemo unit.

There is also the option to stop treatment if it is too much for your mum.

I hope this helps?

Kind regards,

Jeni.
Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

StPancreas
Posts: 3
Joined: Tue Aug 13, 2019 10:49 pm

Re: Chemo for the older patient

Postby StPancreas » Thu Aug 29, 2019 10:50 pm

Hi Jeni,

Thanks for that information - I would rate her as a 1. The chemo info is interesting too. Until you know someone who has cancer treatment chemo is just a work - Mum had no concept of how it worked nor that there were so many different variants/ cycle lengths etc.

I'll update you with the story so far in case it helps someone else .

Following your advice I went back to the GP who sent me to talk to the specialist nurse who was present at the appointment where diagnosis was delivered, rather than refer me direct to oncology. It was a challenge getting through to them - it was always an ansaphone , but eventually I got to talk to them after chasing them through PALS and then the consultant's secretary. They didn't seem happy with the challenge, but they did agree to refer to oncology.

I do feel better about achieving that , but we are still waiting. This week they called again and are asking for a blood test and biopsy before the oncology appointment, so its going to take a while before we understand the position better.

As a panic measure I have also requested a second opinion referral as our current hospital don't seem to be on the ball - quite common though I think from other people's stories.

Mum is pleased how things are progressing. She was so shell shocked at the initial appointment she didn't think of any questions at the time - I had pageloads but they all related to treatment options so seemed irrelevant when they said no treatment. Now she wants to know more about he cancer - size location , where it has spread etc and to quote her 'what I could have won' in terms of what treatment has been excluded and why. It may not change her outcome but it will help us knowing we tried and understand better.

What I should have done at the initial meeting is make sure there was a note giving Mum's consent for me to discuss her directly with the doctors as it has slowed things down. Ironically the nurse had to phone Mum to get consent, but she was too busy being out and about and getting on with her life so they had to leave her a message! Long may that continue.

PCUK Nurse Rachel R
Posts: 60
Joined: Thu Jan 25, 2018 10:52 am

Re: Chemo for the older patient

Postby PCUK Nurse Rachel R » Fri Aug 30, 2019 1:54 pm

Hi StPancreas,

It’s Rachel here one of the other nurses.

That’s is really positive to hear that Mum is doing well at the moment and that you feel she would fall into performance status 1.

You are doing all the right things and I completely agree that it’s important to do all you can in order to access the best care for Mum.

Great to hear Mum is keeping so active.

You know where we are on the support line if you need to chat further. I wish Mum and you well as the biopsy is organised. I hope you don't have to wait too long.

Kind thoughts,

Rachel

Rachel Richardson
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

StPancreas
Posts: 3
Joined: Tue Aug 13, 2019 10:49 pm

Re: Chemo for the older patient

Postby StPancreas » Fri Sep 20, 2019 9:16 pm

Thought I would update as we have a glimmer of hope. Finally saw oncologist today 6 weeks after diagnosis, after lots of hassling for appointments and trying not to fall down a crack in the NHS system.

Oncologist thought Mum looked well. Basically tried to understand what her current lifestyle is like - can she look after herself, does she still drive, go out and about etc. All true. No other medical conditions. We had been asked to do a blood test and biopsy before this appointment. Blood test done, but they backtracked on the need for the biopsy before we could talk to the oncologist. Still took 6 weeks from diagnosis to get this appointment.

Based on blood test 3 weeks ago liver function is OK. Liver biopsy now needed to decide which sort of pancreatic cancer. I got the impression that because Mum still seems well , just a bit weary, they now think it might be the slow growing one ( which she said isn't suitable for chemo) . If it the most common sort that responds to Chemo , and the next blood test comes back OK then they will consider Mum for chemo following a scan. The Gem single agent one you mentioned above.

Lots of ifs and buts but at least we have progressed from NO.
Biopsy will be in the next couple of weeks . Oncology appointment booked for 4 weeks when they will decide ( and request the next scan). Then if decision in Chemo it will be another two weeks - so end of October

This all seems to be taking so long when the scan that the tumour was seen on was at the end of May.

I am being a bit of a pain chasing appointments, but I am worried that our options will run out as time goes by.

At the moment Mum is eating well, has put weight on since diagnosis on 4th August, has no pain and has a good quality of life.

I also have a second opinion appointment lined up for mid October with a different hospital ( where another MDT is based)as a backup , as I am not 100% convinced about the current hospital we are dealing with.

Maybe I am just fussing too much. Or maybe there is more I can do. Doing nothing or waiting for appointments is what I find hard.

Also the GP missed the opportunity for urgent referral in November, so we had to wait for slow referral and then it was another 8 weeks after the scan before we got to see a consultant. From other peoples comments, I can see the wheels often turn slowly, but its very hard to be patient and I am fighting the urge to complain all the time.

At the moment Mum is eating well, has put weight on since diagnosis on 4th August, has no pain and has a good quality of life. Fingers crossed things stay as they are before they decide about treatment