Thoughts from the PC frontline

[WifeampMum]

I have been on this journey for 15 months. My beloved hubby was diagnosed in May 2015 with a non-metastatic mass on the head of the pancreas. He was 59 and we were, naturally, devastated. As the tumour appeared to be contained within the pancreas, a Whipple was attempted but sadly aborted as the tumour involved his portal/SM vein. Before sewing hubby up, the surgeon performed a palliative double gastric bypass, connecting hubby's bile duct and stomach to his jejunum. After the operation the surgeons told us that the next step was to get hubby fit enough for Folfirinox in the hope that it would shrink the tumour away from the veins, and then to have another try at a Whipple. Hubby recovered well post-surgery, but when we met his oncologist for the first time she told us that any treatment would at best control the disease. So already we had 2 conflicting opinions. Such is the way of the PC journey...much confusion thrown in to the heartache and fear.

Fast-forward 9 months to Feb 2016 and hubby had done well enough on Folfirinox then chemo-radiotherapy to have a successful Whipple. He is now half-way through 6 months of adjuvant Gemcitabine.

All his treatment has so far been under the NHS but we would consider private treatment for nanoknife if he has a recurrence. Overall the care that he's received has been great although I wish his oncologist was more gung ho in her approach. We've had 2 second opinions with an oncologist who seems to favour more aggressive therapy and because my husband is otherwise fit and relatively young this has been the right path for us. After the aborted Whipple in 2015 I sought out a surgeon with more of an interest in my husbands particular problem of vascular involvement. Fortunately I found one at the same hospital and thankfully he was willing to take us on through the NHS.

I've been posting here for 5 months and before that I lurked. I'm a voracious PC researcher - before retiring my career was in academic librarianship - and I like sharing stories about promising new treatments in the "Treatments and side effects" forum.

I've always told myself I wouldn't start a personal thread as I find the idea of people following me quite unnerving. But I've decided to dip my toes in the water and to see how it goes. I know others here find committing words to the Ethernet therapeutic, and I hope it works for me too. It's certainly not intended to be a blow-by-blow account of hubby's treatments, results, or physical condition but more a place for me to express opinions and concerns when I'm in the mood to post.

If, along the way, I upset or offend anyone, please understand that it would never be intentional. I have the greatest respect and sympathy for everyone who finds themselves here.

Sending my very best wishes to everyone touched by PC

W&M xx

[Guest]

Oh W&M, I'm so happy that you have decided to share your journey, not only is it good therapy but it's incredibly important for us to know we are not alone and hear what helps or doesn't, for others.

There is no point is worrying about causing offence. No one on here sets out to upset or offend people, sometimes we feel angry or hurt and on those days even Mother Theresa could offend us. Don't worry about it, it's part of the process as they say.

I'm glad you dipped your toe in and good to have a synopsis of the journey so far for those of us who have joined in half way through! Much love M xx

[WifeampMum]

Thank you Marmalade for the lovely welcome for my personal thread. As others have said before me, you have a great talent for writing that shines through on your own thread. I'm more nerd than wordsmith!

I hope Louis continues to take much enjoyment from life. He is very lucky to have such wonderful support in you and your daughter.

Much love, W&M xx

[Dandygal76]

I am also happy to see that you have posted. You know I definitely find it therapeutic to tell our story the way I do. This is your thread and you say what you want to, you won't be offending me on any level with anything you say. I have only seen good people on here with the best of intentions, you included.

I for one am very interested in your research. We have both found different paths and different ways by questions, research and second opinions.

May your thread continue into thousands of pages as your husband lives to a ripe old age with you at his side!

xx

[WifeampMum]

Oh DG, I'm really touched by your words - thankyou!

Your energy and resourcefulness in supporting your Dad is inspirational and I hope that my children would do the same for me. Kids - if you are reading this, take note

And may you and your son see your Dad live to a ripe old age too.

W&M xx

[Didge]

Well done for posting your own thread. I often found it useful because sometimes you will see a post from someone and wonder "how did their journey start?" and then can go back and see that. Especially useful for people whose journeys may mirror yours in terms of diagnoses, treatments etc. Xx

[Ruthus]

Hi Wife and Mum

I am really pleased you have started your own thread. I always find reading your research really helpful and it cuts through a lot of the information out there and you share the most relevant research. As a PC sufferer I feel a bit in the middle and stuck at times as I desperately want to raise awareness and contribute/be a client voice in shouting loudly that we need more money for research, more effective treatments fast! But also don't want to be all consumed by it.

I am still writing my own story to share for the PC site and I've just set up a Just Giving page which I will post a link to when I've finished it. I have also been thinking of the best people to contact/approach re PC funding and research. I've thought about contacting my local MP and contacting Cancer Research. Would the PC nurses advise on this too?

I have been thinking about requesting my tumour is profiled. Thanks for the two links. Would PC nurses advocate any as being better?

BW

Ruth

[WifeampMum]

Thanks Ruth, for the kind words about my research. If I'm already doing it for my family I figured it would be little extra bother to share it here. Also this disease is so bloomin unforgiving that any little good thing I can squeeze out of our predicament is a big blessing.

Tumour profiling - the link that I posted is to a research organisation. They won't do any commercial testing, but they may be able to advise. But it's definitely a case of buyer beware, my understanding is that currently there are a lot of reasons why molecular profiling could be a waste of money for PC patients.

I can provide more info if the PCUK nurses aren't able to chip in at the moment.

[WifeampMum]

Tumour profiling

I think this brief run through about PC tumour profiling is very informative though I get the impression that the oncologist presenter is a glass-half-empty kind of guy!

You can find the relevant section at around 24 minutes into this YouTube video:

It's a recording from the 12th Annual Hirshberg Symposium on Pancreatic Cancer, March 2016. The presentation is "Dr Lee Rosen Discusses Advances in Cancer Chemotherapy".

[Dandygal76]

That was a great find W&M! Very interesting. I also read somewhere that profiling may only help at the moment in 15% of cases. I have also read of a case where a guy was pretty much cured with Breast Cancer drugs from his profiling but I cannot find the article again. The issue I have is that, if you are able to have it done, you have to take a punt and check you are not in that 15% and that the remote cure is not out there in your case. We are always between the devil and the deep blue sea with these things around PC though because I don't think I would really want to know if he had the most resistant mutations either but what can you do... we just have to keep traipsing onwards. x

[WifeampMum]

Tumour profiling - PRECISION-Panc

I just received a very friendly reply from PRECISION-Panc

http://www.precisionpanc.org/

in response to my query about the profiling of my hubby's excised tumour. At the moment they're focussing on patients who've just been diagnosed but they said I can try them again if hubby has a recurrence. They said that if his cancer does recur it will probably have a different molecular profile, therefore from a treatment perspective there's little point in getting it tested now anyway. Which is what I suspected but it was good to hear it from an expert.

W&M xx

[Ruthus]

Thank you Dandy girl and Wife & Mum

I think you are right DG in stating it wouldn't be good to find out you had a more aggressive tumour so in many respects ignorance maybe better. That is very interesting regarding molecular changes if there was a reoccurrence. Therefore would make more sense to go down the tumour profiling route if there is a reoccurrence. I would imagine CA-19 markers are a good indicator of tumour activity in between CT scans.

I would be interested to know what the pancreatic UK nurses think about tumour profiling and where this is up to currently in the UK?

[Dandygal76]

Hope you get this in time... you need to get in quick on this webinars. https://events-na8.adobeconnect.com/content/connect/c1/1136537785/en/events/event/shared/default_template/event_registration.html?sco-id=1925300831&_charset_=utf-8

It is 5pm this evening.

[WifeampMum]

DG many thanks for webinar link. I'll be travelling at 5pm but have registered and hopefully will get an alert when the recording is posted. hope you find it useful for your Dad!

xx

[PCUK Nurse Rachel C]

Dear All,

Thank you all for your posts and apologies for the slight delay in replying.

As you are aware there has been a great deal of interest in the area of molecular profiling, especially in other cancers such as breast and bowel, however and sadly with pancreatic cancer we are a little further behind. That is why, as a charity we are keen to fund research like that of- Prof Biankin’s and Ricky Cunningham’s -Finding the right treatment for the right patient in pancreatic cancer – You can read further about their research project below (2nd project on list)

http://www.pancreaticcancer.org.uk/research/research-we-fund/future-leaders-fund/personalised-treatments

We are aware that some patients in the UK have had their tumour sent away for molecular profiling (usually privately and to the USA-and can cost a few thousand pounds), so we do know that some patients are choosing to do this.

Currently and sadly, there are still few targeted treatments available for pancreatic cancer, so although your tumour may be profiled, unfortunately and within the UK, there may not be an appropriate treatment option out there at present…….unfortunately, this may also vary if you are a private patient. (eg if your tumour is sensitive to Abraxane, you may be able to access this privately).

PrecisionPanc are a group of experts in the field of genomics and pancreatic cancer and are based at the Wolfsan Wohl Cancer Research Center, at the Institute of Cancer Sciences, University of Glasgow. X(EDITED-MODERATOR) also a leader in this group and championing the way forward with his research- see link below:.

http://www.precisionpanc.org/patient-information/dna-and-genomes/

PresisionPanc quote ‘Personalised therapy for pancreatic patients is not routinely available within the NHS. The NHS is currently working out how to introduce personalised approaches to treatments to routine clinical care at the moment’.

NHS England are working toward a personalised medicine strategy and this can also be found in the link below:

https://www.england.nhs.uk/wp-content/uploads/2015/09/item5-board-29-09-15.pdf

PrecisionPan also states ‘In the meantime, we are able to offer advice and assistance to pancreatic cancer patients who wish to have their tumours analysed. We may be able to help patients and their clinicians decide what the most suitable treatment options could be’

Just some practical points-

Molecular profiling needs to be done before any treatment (chemo/radio/drug therapy) has started (if enough tissue-may be done at diagnosis).

Treatments such as the above, can change the molecular profile of the tumour.

Should a patient unfortunately relapse, then the recurrent tumour will need to be profiled (based on the above). This is itself may pose certain problems, such as accessibility of the tumour (or may make it easier).

Certainly ourselves and our colleagues who are specialists in the area of pancreatic cancer are watching the topic of molecular profiling of cancers with great interest. The idea of using genomic profiling to personalise treatment strategies for pancreatic cancer seems a real step forward and offers a much needed ray of hope.

Not sure if this is useful?

Rachel

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[WifeampMum]

Many thanks Rachel for your helpful update and good that PrecisionPanc is able to offer some kind of service to patients. I hope we don't have to wait long for an NHS service but I'm not going to hold my breath.

W&M

[Guest]

Hello W&M,

I went back to the start of this thread and saw that it was to be about your journey. I know how hard it is to talk about how the journey affects us, much easier to write about other things but just wanted you to know that I think about you and how it is for you. I am tapping the keys with love that I hope will filter through the ether to you. M xx

[WifeampMum]

Dear Marmalade

Oh gosh, your post has really moved me. You're going through the hardest time with Louis and you're thinking of me, you are very kind.

How is it for me? Today, at this moment, writing this post, I am good, and counting my blessings as I should be. Compared to the majority of PC sufferers, my hubby has been incredibly fortunate. Of course, compared to non-PC sufferers, we've been dealt a pretty lousy hand but that's not something I think about very often.

I try to take things as they come and not worry about the future and most of the time I succeed. I've been practicing mindfulness meditation for the past year and this has helped enormously.

Of course I get upset when hubby is feeling rough. The roughness is usually digestive symptoms...indigestion, nausea. That's when I go into 'fixer' mode, trying different foods, routines, natural remedies. The feeling of helplessness, when your loved one is suffering and there's nothing that you can do, can be absolutely awful. Particularly if you think it might never get better.

Hubby will probably feel bad today as it's that time in his chemo cycle. But he should be feeling better by the weekend and will be able to enjoy life again. And I'm learning to enjoy life even when he is feeling bad, because life is short and feeling bad because he's feeling bad doesn't help either of us, and he really wants me to embrace life. So this afternoon I'm meeting a friend for coffee and am really looking forward to it.

Hope you and Louis are able to find some enjoyment in today, and I send my love back

W&M xx

[Dandygal76]

W&M.. thank you so much for the Forfirinox info. If you come across anything else I would really appreciate it.. you are better at filtering out the rubbish on the research front. I am so grateful for your input. x

[WifeampMum]

Hi DG

I've no plans to stop posting about research breakthroughs. If you'd like me to help you find info more specific to your Dad's case I'm happy for PCUK to give you my email address so we can discuss it off-forum.

W&M x

[WifeampMum]

Recent posts on various threads have touched a raw nerve.

I think it's massively difficult, as a carer of a loved one with PC, not to look back and feel that you could have done more, or should have done things differently, in order to keep them with you for longer or make things easier for them.

At a recent oncology clinic, I told hubby's oncologist that I didn't want to live to regret opting for a particular treatment pathway. She replied with a comment that upset me for weeks afterwards. She told me that however she treated him I would probably end up beating myself up about it. And therein lies one of the difficult truths about PC - it is such an individual disease, and so little is understood about it. Therefore the medics have little or no idea if a treatment will be successful, or how long it will be successful for, so we can't rely on them to advise us. We're all scrabbling around in the dark.

For example, there's the million dollar question of quality over life versus quantity of life. Most PC sufferers and their carers reach the point where a particular treatment has stopped working and they have to decide whether to try further potentially life-extending treatments or embark on the purely palliative route. This is an incredibly difficult decision to make, as sometimes changing to a different treatment extends life, and improves the quality of life considerably, but it can also shorten life and/or make it more miserable. We just don't know, and nor do the doctors.

This all goes to show that no loved one should feel guilty over the decisions made on the PC journey. We can take medical advice from one or several sources, we can rely on research that we've found or the experience of others, we can trust our instincts or the instincts of the patient. All of these are valid criteria. And then all we can do is hope and pray for the best.

W&M x

[Dandygal76]

Agree with you 100% W&M. There are no right and wrong choices when dealing with PC... we are all just feeling our way through the darkness. x

[Proud Wife]

Gosh what a great post W&M and so incredibly true. However posting with raw emotion today my head is arguing with my heart. I go from thinking whatever happened was the way it was meant to happen and we did our utmost but in bleaker times, then I can start thinking well if he did this or did that, would he have been here longer.

The truth is, we will never know.

Purely out of interest then, are you saying that something like breast cancer or prostrate cancer follows a similar path and decisions are far easier?I've not looked into any other cancers and I hope I never ever have to again in my lifetime!

But as I said before W&M you have summed it up in a nutshell xxx

[WifeampMum]

PW, sadly I think understanding of how to treat PC is still in the dark ages compared to other cancers like breast and prostate. Because more is known about these other cancers there is less guesswork on the part of the clinicians and they can better guide the patients and families over treatment pathways. Also because they're less aggressive cancers, there is more time to make decisions. Because of the (generally) better outcomes, the decisions aren't so scary.

But I certainly don't think these other cancers are a walk in the park.

xx

[PCUK Nurse Jeni]

Hello W&M,

Can I reiterate what the others have said regarding your post - it is a very concise and balanced "overview" of the pathway relating to pancreatic cancer, both as a patient and as a carer.

I am sorry to hear that you were upset by the comment made by the oncologist - however, you have put your thoughts down on "paper" as it were, and have also had some very good views surrounding the decisions people have to make.

I think in all cancers, the decision you refer to around life-extending treatments or palliative care, does come to each patient who has carried on the route of chemotherapy for considerable time. At some point, in the majority of cases, there will come a point when this decision has to be made. You are right in saying that more is known about other cancers, but also, the crucial thing is that there are (often) more treatment options in these scenarios. Such that, the decision referred to above could be coming after 4/5 different treatment options, which could be a variety of things (chemo, radiotherapy, monoclonal antibodies, hormones - amongst some).

With pancreatic cancer, there is a lot of research looking into why it is so hard to treat, why it is not so responsive to chemo (at times), and where there are keys surrounding tumour cell biology - potential keys to unlock the answers to some of these questions. But, you know, research related to PC is behind counterparts such as breast/bowel etc....

However, what can be said, is that in the past few years, progress has been made - in 2010, folfirinox wasn't even being used (although of course the drugs existed in different combinations for bowel cancer). Abraxane was not being used - although existed in breast cancer. And so on.

Thank you for summing up the challenges from a personal and also, wider perspective.

Jeni Jones.

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707