A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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

Re: My Journey So Far

Postby Ruthus » Sat May 07, 2016 9:42 am

Hi Dandy gal

I have found your post very uplifting and interesting. When I was first diagnosed at the start of November 2015 I looked at the statistics and I felt very hopeless,..the website I looked at stated clearly on the first page in large letters,..3% survival rate for pancreatic cancer 40 years ago and still stands the same today. I was astounded at how bleak this was. However when I did my own research and thinking I realised that these figures may not be entirely reflective of todays statistics.

Like you have quoted from the specialist. It takes 5 years to gather results from latest treatments. Lets hope in the era of Folfirinox those results have improved.
There is hopefully some recognition and awareness at last that pancreatic cancer needs investment desperately to improve treatments and survival and I am aware the government gave 70 million last year.

It has been interesting to read other comments made on the thread regarding new studies and treatments such as the American study looking at placing a catheter directly into the tumor to more effectively administor chemotherapy. This will hopefully be leading to human clinical trials in the near future.

I am very keen to raise awareness and raise money specifically for Pancreatic cancer research. I have a few ideas of how to do this but am currently awaiting news from Professor Leen regarding nano knife and also second opinion regarding surgery from Germany. I also have a further 4 Folfirinox chemotherapy treatments left.
I am still keeping active and cycling, and escaping to Spain as much as possible.

Love to all battling this disease or caring for someone suffering with PC.
Ruthus

Proud Wife
Posts: 727
Joined: Sun Jan 17, 2016 9:28 am

Re: My Journey So Far

Postby Proud Wife » Sat May 07, 2016 3:12 pm

Read D76!

Very good comment Ruth on the 5 year survival statistics. If I can offer any practical help Ruth with your fund raising plans, let me know.

I hope Mark will soon pop back and let us know how his 2nd nanoknife treatment went. Trust all is well.

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

Re: My Journey So Far

Postby Ruthus » Sun May 08, 2016 1:52 pm

Thank you PW. I will certainly get in touch and let you know what my plans are. I am just waiting to have a bit of a clearer idea of where I stand with treatment first so I can put plans in place for fundraising.

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

Re: My Journey So Far

Postby Ruthus » Sun May 08, 2016 2:17 pm

This maybe a question for the PC nurses. With regards to upcoming trials using immunotherapy, are you aware of any new trials in the UK which will be run soon? I have a look at the NHS clinical trials site on occasion to view the current clinical trials being run in the UK and abroad. I haven't seen any so far using immunotherapy and would be interested to know if there are any planned for the near future.

Ruthus

Ant11
Posts: 125
Joined: Sun Dec 01, 2013 8:43 pm

Re: My Journey So Far

Postby Ant11 » Mon May 09, 2016 12:10 pm

Dear Ruthus

Either ask support nurses for me email, or ask them about Tracy and her immunotherapy treatment she was on. Regards Annette x

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

Re: My Journey So Far

Postby Ruthus » Mon May 09, 2016 12:49 pm

Hi Annette
I will email the nurses now to request your email and email you this afternoon.
Many Thanks Ruth x

MSH
Posts: 228
Joined: Tue Apr 30, 2013 10:03 pm

Re: My Journey So Far

Postby MSH » Mon May 09, 2016 1:54 pm

I have been through the mill a bit in the past few weeks, so the fact that I am updating this thread hopefully represents progress. Looking back things merge into a kind of melting pot, with occasional outstanding features such as the Nanoknife. Anyway after being off treatment for several weeks I was pleased to arrive at the chemo unit on 15th April. They told me I couldn't have any treatment. My oncologist had asked around and decided to have a weeks gap around the Nanoknife. I was livid. I generally am even-tempered and I know the nurses are only able to follow directions and protocols, but, well let's just say I made my feelings known. Things weren't helped by BT forcing me to change my e-mail password, probably because of accessing within the USA, and then losing complete access to my e-mail. At least I would have had some notice as my oncologist had e-mailed me.

So the 19th of April arrived and I presented myself for the Nanonknife. Professor Leen gave a rueful smile when I asked about any contra-indications with Gemcitabine, and confirmed there aren't any. He did say that he has now done over 100 procedures on the pancreas and about 6 for a second time. He must be the most experienced person in the country, and quite possibly the world with this procedure. I felt well the next day and made my way home via The Green Man who did an excellent lunch for us. Two days later I met with my oncologist who admitted her decision wasn't based on any evidence. The following Wednesday I had the first of the fifth cycle of Gemcitabine.

I am very fortunate in that I have never vomited after chemo, well not until then. I was sick over the next few days, had variable problems with abdominal/back pain and became jaundiced. Someone at the hospital wasn't happy with my previous bloods and wanted them repeated in the hospital. The outcome of that was an urgent CT scan last Friday, and I am awaiting the team to review the images and to suggest a solution. The big question is whether this is disease progression or something more incidental such as the stent blocking or inflammation, my CRP was 186. I had thought it likely to be the disease and was quite prepared to call it a day so to speak. It isn't easy when the pain seems unrelenting especially at night. More recently I have become more hopeful. My condition is definitely variable and has improved if anything over the past few days.

I will update again when I learn of my doctors' decision which should come in the next day or two.

Dandygal, I think you are spot on with regard to many of the survival stats now being outdated and that the future is probably immunotherapy possibly helped by genetic profiling. I'd like to think I will still be here to take advantage of the latter, but am only grateful I was able to benefit from the former. It is an interesting line we tread between being positive and hopeful and realistic.

My best wishes to all.

Mark

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: My Journey So Far

Postby Dandygal76 » Mon May 09, 2016 9:38 pm

I am so grateful to hear from you, I am sorry you are having a bad time. Never give up, the medical profession on the NHS are trained to give up. My dad would be on his death bed if we listened to NHS. I know the benefits of having an NHS on the whole... i am a very socialist person in many ways. However, I appreciate that my dad and you are far more forward because we have some finance. I would pay in a system that equalises that every day of the week. But it is a social question beyond me. However, I have joined a new group on FaceBook... Nanoknife surgery warriors. It is a small group but it is positive. We are in limbo at the momment... I think for a while we will just be living between the scans. May the next one be so positive... please x

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: My Journey So Far

Postby J_T » Mon May 09, 2016 10:29 pm

Sounds traumatic Mark, but pleased to hear you are feeling better and more positive.

Hope you have some more encouraging news in your next update.

KBO

Julia x

PCUK Nurse Dianne
Posts: 265
Joined: Tue Aug 14, 2012 2:29 pm

Re: My Journey So Far

Postby PCUK Nurse Dianne » Tue May 10, 2016 9:52 am

Thanks Dandygal for your post of last week re statistics,

This is an interesting point, and certainly one that our team of nurses is well used to answering. From our perspective, statistics are numbers, and do not always reflect the amazing progress that patients (Mark being a classic example) make. During this process so many of you remain upbeat, inspirational and supportive of others - this in itself is a major achievement.

From the time that Jeni and I commenced working with the charity we have heard some amazing stories from patients who have defied all the odds, and this is a point we wish to highlight. Of course we do also appreciate this journey is not the same for everyone,and respect you in this conversation too. There have been some amazing advances in both treatments, and research into pancreatic cancer treatments and support is more advanced than 5-7 years ago. We do have quite a few queries about immunotherapy and if anyone wishes to be in contact with the support service we can certainly pass on some contact details to you.

We are also aware that there are other 'less scientific' factors that will improve patient outcomes, and this includes information about 'optimising' your condition - information about nutrition, use of pancreatic enzymes, support mechanisms in your local area, proper management of pain relief and symptoms and also holistic treatments such as massage and reflexology and access to support groups that all help on an individual basis.

As a group of nurses we so frequently feel humbled by those people who use our service and share their experiences, and we can certainly say that we have seen some very positive outcomes for many over the last 12-18 months.

This is also the amazing aspect of this forum that it is often the support and commraderie that you share amongst yourselves that is inspiring and uplifting and is so important to share.

Dianne
Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK Support Team

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

Re: My Journey So Far

Postby Ruthus » Tue May 10, 2016 5:41 pm

I am sorry to hear of your recent troubles Mark. I really hope the outcome of the scans are favourable.
Ruth

MSH
Posts: 228
Joined: Tue Apr 30, 2013 10:03 pm

Re: My Journey So Far

Postby MSH » Tue May 10, 2016 7:45 pm

Just a quick update. I was contacted by the endoscopy unit this morning who have asked that I have an ERCP with stent this coming Friday. This is marvellous news as it would suggest that my problems have been more mechanical and hopefully relatively easily fixed. When you have this you are heavily sedated and I can't remember much that the doctor said post procedure last time. I do recall him saying it was quite tricky, which I can well imagine. There must be a lot of scar tissue around there. I was gardening for an hour this afternoon which represents real progress. We can but hope.

Mark

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

Re: My Journey So Far

Postby Ruthus » Tue May 10, 2016 7:53 pm

That's very positive news. Glad to hear this. I was very fearful of my ERCP but found it nowhere near as horrible as I had anticipated. Good luck!

PCUK Nurse Jeni
Posts: 1002
Joined: Mon Jun 14, 2010 12:30 pm

Re: My Journey So Far

Postby PCUK Nurse Jeni » Wed May 11, 2016 10:58 am

Hi Mark,

Good to hear about the repeat stent procedure. I hope it goes really well, without any hitches.

As Dianne said, you are doing remarkably well. Keep it up - we are all behind you!

Jeni.

Helliemo
Posts: 24
Joined: Fri Dec 18, 2015 11:46 pm

Re: My Journey So Far

Postby Helliemo » Wed May 11, 2016 1:25 pm

Hi Mark,
My Grandmother had very similar symptoms and ended up having a stent fitted into the common bile duct. Her oncologist thinks it's scar tissue from the NanoKnife that caused the blockage. She is now feeling good again. Hopefully it will be the same for you.