Chemo for the older patient

[StPancreas]

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]

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/information-and-support/treatments-for-pancreatic-cancer/chemotherapy-for-pancreatic-cancer/main-drugs-for-pancreatic-cancer/gemcitabine-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]

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]

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]

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

[PCUK Nurse Jeni]

Hello St.Pancreas,

Thanks for the post and update - as you say, something positive at least.

Have you asked why another scan is needed now? And if it is, why it cannot be requested now, instead of after the liver biopsy, so that at least it is in the "pipeline"?

It is good to hear that you have a second opinion lined up - it would be advisable to proceed with this.

With regards to the liver biopsy, feel free to come back to us after the results if we can help at all.

I am not sure what is meant by a "slow growing" tumour - perhaps a Neuro-Endocrine tumour - was this mentioned? (NET)

If it turns out to be this, come back to us and we can signpost you if appropriate.

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]

HI Jeni,

Thanks for posting . The scan would be a staging scan at the start of chemo so they could monitor the affect. The slower growing tumour they talked about was a NET as you suggested. I have asked if it can be arranged earlier , but I am not confident they will schedule it.

Still no sign of a biopsy appointment though. I spoke to the specialist nurse sand they said the earliest appointment they could get was w/c 14 October, which they agreed was not suitable. They referred me to PALS.

Spoke to them today, they have escalated the case to heads of department and the medical director to see if they resolve it as the hospital has no appointments available.

I am getting increasing concerned about how long all this is taking. It was 9 weeks between the scan and diagnosis and its been 7 weeks since that and we are still weeks off starting any chemo. Is this usual or is this hospital particularly slow? There doesn't seem to be any sense of urgency with anything.

On the upside Mum is not in pain , but getting more fatigued. Eating well and weight is stable.

[StPancreas]

Well referring to PALS had the desired effect . Head of Oncology called me from abroad basically saying the hospital needs to be more efficient and that she will kick radiography to try and get an appointment. Also will schedule the scan at the same time and book chemo for 3 weeks, as it can be moved if we aren't ready but its hard to slot in at the last minute.

I told her the oncologist we had seen had no sense of urgency, but she told me not to worry as she was advocating for my Mum now. She doesn't do HPB oncology herself, but I think she will keep a close eye.

What helped I think was the timeline I had given which is below. I wish I had kept this list as i went along , as it took a bit of effort to pull it all together.

The head of oncology said how much resources are wasted as they keep people hanging around. Good to have her onside.Hopefully biopsy appointment will be soon.

Oct-18 GP visit due to unexplained weight loss

Oct-18 Ultrasound of ovaries

Nov-18 Return to GP. Non urgent referral for endoscopy

May-19 Endoscopy appointment cancelled by hosp and rebooked for August 2019

May-19 Urgent GP referral to upper Gi - suspected cancer

10-May Appointment with Dr @ Hosp1 - Endoscopy and CT scan requested - follow up in 4 weeks advised in letter but never made

30-May Endoscopy completed - NAD

31-May CT completed - sister hsop

June Letter received confirming Endoscopy and biopsy on nodules stating CT scan results outstanding

14-Jun chased results with secretary - told there were long delays

10-Jul GP referral for Lower GI -due to diarrhoea symptoms

25-Jul Seen by Lower GI Dr x at local hosp . Confirmed bowel was clear on CT scan but He reported 4cm grown on pancreas and shadows on liver. Not his department. Referred to MDT

31-Jul Case discussed at HPB MDT

05-Aug dr x ? Upper GI seen at Hosp 1 - Pancreatic cancer diagnosis. Palliative care only due to age. ( No-one in MDT had met Mum)

15-Aug GP discussion re age discrimination on treatment offer

15-Aug email and voicemail to upper GI Macmillan nurses requesting oncology appt

19-Aug Discussion with Upper Gi Macmillan nurses Oncology referral agreed.Blood test and Biopsy required

Some delays whilst Macmillan confirmed consent from mother to talk to me (twice)

30-Aug Blood test completed via GP with form from hospital

05-Sep Chased biopsy appointment with Macmillan Agreed oncologist would see before biopsy

09-Sep Oncology appointment chased with first referrals at cancer centre - still missing some info

16-Sep Oncology appointment chased with first referrals at cancer centre

20-Sep Oncology appointment with Dr S Hosp 1 . Agreed suitable candidate for chemotherapy subject to biopsy to confirm adenocarcinoma and not NET and liver function tests maintained. Plus clotting test.

20-Sep Blood test repeated at Hosp1

24-Sep Macmillian nurses chased for biopsy appt - confirmed referral was on system

26-Sep Macmillan nurse chased for biospy appt. Confirms earliest available date w/c 14th Oct. Nurse confirms this is not a suitable date given patients prognosis

[PCUK Nurse Rachel R]

Hi StPancreas,

It's Rachel here, one of the nurses. I'm really pleased to see that you've had a positive conversation and hopefully now will see movement. Well done on providing the time line - I think this is a really powerful way to get the message across.

You know where we are if you need to chat.

Kind wishes,

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[StPancreas]

HI another update. Since I rasied the delay isse with PALS things have got moving. Mum had a sccan yeterday and biopsy ins next week. Had a chat with oncologist who is leaning towards a NET , which is slower growning Liver function stable and CA19-9 stable too. She was quite surprised.

Hopefully results will be back when we see the oncologist on the 18th Oct. Sneaking in a 5 day cruise - get off ship and go straight to hospital! Got to grab the good times where we can.

[PCUK Nurse Jeni]

Hi St.Pancreas,

Great to hear that things are moving since the PALS got involved - I am sure that this is a load off your mind at least.

The cruise sounds ideal - have a wonderful time! Well deserved!

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]

Well its been another interesting week. A month or so ago I had a requested second opinion referral to a major hospital, but when i booked the appointment the earliest availble was early December. I queried it at the time and although it was marked as urgent it was the best they could do. I had a nagging doubt it wasn't right, so at the weekend I found the email address of the upper GI specialist nurses there so I thought I would check.

Turns out we had been referred to the cirrhosis clinic! They were lovely though and moved us to the right clinic. They offered an appointment next week, but as we are now booked on the cruise, we have appointment on the 23rd. The nurses were very helpful and asked lots of questions. They even called back for more info. They are going to access the scans and chase for results too.

We had the biopsy today. I have to say it all sounded a bit scary , but it went smoothly . Results will apparently take 10 days. Original hospital appointment is in 8.... hmm

What they did say today was there was fluid round the liver which doesn't sound great. They had to choose the site for the biopsy carefully , but on his second snip he was happy with it.

Should I be worried about the fluid? I know lots on this forum says its all ups and downs with pancreatic cancer. They are right. Just when I begin to get optimistic something knocks us back.

[PCUK Nurse Jeni]

Hello StPancreas,

Thanks for the update and apologies that we have not replied until now.

Sorry to hear about the mix-up with the clinics that your mum was referred to. Its a good thing that you trusted your instinct and made the call to check what was happening.

Its great to hear that the nurses were so helpful, and that they are chasing up results on your behalf.

It might be an idea to ring prior to the appointment to ask whether they can chase the biopsy results also - I know from experience when in the NHS that we often asked the pathology staff for a favour in releasing results quicker when needed for clinic. So, worth the ask.

Regarding the fluid, it depends what it is StPancreas - did they mention what it was in particular? I think it certainly needs more explanation and discussion at the appointment next week.

Please do not hesitate to contact us should you need to.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707