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

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Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Thoughts from the PC frontline

Postby Wife&Mum » Sun Jul 10, 2016 11:41 am

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

Marmalade

Re: Thoughts from the PC frontline

Postby Marmalade » Sun Jul 10, 2016 12:13 pm

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

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Sun Jul 10, 2016 2:34 pm

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
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Sun Jul 10, 2016 2:37 pm

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

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Sun Jul 10, 2016 3:08 pm

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
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Thoughts from the PC frontline

Postby Didge » Mon Jul 11, 2016 11:48 am

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
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Thoughts from the PC frontline

Postby Ruthus » Mon Jul 11, 2016 2:21 pm

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

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Mon Jul 11, 2016 2:58 pm

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.

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Mon Jul 11, 2016 5:16 pm

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:

https://youtu.be/rODIWBzwsLs

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
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Mon Jul 11, 2016 9:39 pm

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

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Tue Jul 12, 2016 3:51 pm

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
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Thoughts from the PC frontline

Postby Ruthus » Tue Jul 12, 2016 4:15 pm

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
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Wed Jul 13, 2016 9:45 am

Hope you get this in time... you need to get in quick on this webinars. https://events-na8.adobeconnect.com/con ... set_=utf-8

It is 5pm this evening.

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Wed Jul 13, 2016 10:25 am

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
Posts: 61
Joined: Wed Jan 14, 2015 4:25 pm

Re: Thoughts from the PC frontline

Postby PCUK Nurse Rachel C » Wed Jul 13, 2016 11:37 am

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/rese ... 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. Prof Biankin is also a leader in this group and championing the way forward with his research- see link below:.

http://www.precisionpanc.org/patient-in ... d-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/u ... -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