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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Winkle
Posts: 14
Joined: Wed Oct 02, 2013 11:41 am

Re: My Journey So Far

Postby Winkle » Wed Nov 06, 2013 10:08 am

Hi Mark,
I am due to start my first dose of Folfirinox on Friday and your descriptions are very helpful. Thank you
Kathy

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: My Journey So Far

Postby Slewis7313 » Wed Nov 06, 2013 10:09 am

All sounding very positive with you Mark. I certainly hope the PET scan reinforces your general progress and puts you into the realms of being considered for the surgery. I also wish you a great holiday in Turkey. I am just trying to escape from Germany!

Take care

Steve

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: My Journey So Far

Postby Cathy » Wed Nov 06, 2013 11:04 am

Hi Mark

I'd been thinking we hadn't heard from you for a while so am very glad ot hear you are doing well.

Jonathan had the same experience re tingling - last 2 cycles were much worse and have teken some time to subside (they are now).

Echo Julia's sentiments re Turkey - it is beaustiful and fantastic food (which may not help with your trying to lose weight :) )

All the very best

Cathy

Winkle
Posts: 14
Joined: Wed Oct 02, 2013 11:41 am

Re: My Journey So Far

Postby Winkle » Thu Nov 07, 2013 8:22 pm

Hi Mark,
I have just been to have my bloods taken and get the results before I start my Folfirinox tomorrow. Unfortunately the scan has shown another two or three lesions on my liver. My surgeon who was up for operation if my liver lesion shrank, now seems to have given up on that option. I am fairly heartbroken, but will start my chemo in the hope that somehow the fulfirinox will blast the new and older lesions away. My pancreas is still operable. If any one has anything that might give me some hope or cheer me up please let me know.
Kathy xx

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

Re: My Journey So Far

Postby J_T » Thu Nov 07, 2013 9:08 pm

Hello Kathy, sorry to hear about your results. Its possible the Folfirinox will shrink your liver mets, I hope it does.

In the meantime a few people on here have been very pro-active in phoning, writing and emailing all over the country to see if there are any other options available to them and with some success. Although I know its difficult, and hard to know where to start, it might give you something to focus on in between your chemotherapy cycles. I am sure some of those people might point you in the right direction to start with.

I would probably start by cutting and pasting your last post here into a new thread of your own, probably in the Patient Experience forum.

Good luck.

Julia x

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: My Journey So Far

Postby MSH » Fri Nov 08, 2013 9:55 am

Hi Cathy, as Julia says it is possible that the liver mets will respond to the Folfirinox. I learned that I had bony mets after my mid point CT scan. The first 2 scans had failed to show them. It seems that if the mets are responding to chemo then there is new bone growth which can be picked up on the scan. One of the main purposes of my forthcoming PET scan will be to indicate if there is on-going activity with them.

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: My Journey So Far

Postby InfoForMum » Fri Nov 08, 2013 11:37 am

Hiya,

Probably not something for right now, but depending on how things go it may be worth looking into Nanoknife . Steve Lewis has posted on this. It is a non-invasive treatment using electrical currents to punch holes in the tumor with the aim of disrupting cancer cell biology and eventually causing the cells to die. It's not classed as curative, but has had promising results as a palliative treatment both on main tumours and on mets. There have also been suggestions it can increase the effectiveness of chemo given concurently or following. The usual fly in the ointment is that it's not formally NICE approved for pancreatic cancer and only done privately at the moment.

I am NOT an expert and don't want to send you barking up wrong trees, so something to perhaps do a bit of research on in the back ground.

PCUK has an article on it here including links to recent research http://www.pancreaticcancer.org.uk/abou ... technology

One patients experience of getting it here - http://www.pancreaticcancer.org.uk/abou ... -nanoknife

Steve's thread has some more http://forum.pancreaticcancer.org.uk/vi ... t=60#p9070

NICE Guidance that mainly amounts to having to judge your own risks related to this and then make up your mind. http://guidance.nice.org.uk/IP/838

Another on the workings of Nanoknife - http://www.ncbi.nlm.nih.gov/pmc/article ... 557/pdf/gn

and this is an interview with one of the leading UK experts online http://www.totalhealth.co.uk/clinical-e ... -nanoknife.

Sarah
XXX
Last edited by InfoForMum on Fri Dec 06, 2013 8:12 pm, edited 1 time in total.

PCUK Nurse Jeni
Posts: 1085
Joined: Mon Jun 14, 2010 1:30 pm

Re: My Journey So Far

Postby PCUK Nurse Jeni » Mon Nov 11, 2013 10:58 am

Hi All,

Thanks for this Sarah. I have removed the reference to Cyberknife, as Nanoknife, in fact, is a different thing completely.

Nanoknife is still only available privately right now.

Kind regards,

Jeni.

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: My Journey So Far

Postby InfoForMum » Mon Nov 11, 2013 11:38 am

Apologies for the confusion - thought the terms were interchangeable. Thanks for the vigilance Jeni!

Sarah

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: My Journey So Far

Postby MSH » Thu Dec 12, 2013 11:51 pm

We had an excellent few days in Istanbul, it really is a vibrant city with its mix of people some very westernised and others in full burka. Most of the places I have been to allow me to pass as a native at least at first glance. In Turkey I was easily identified as a tourist and deserving of help usually involving the choosing of a carpet.

I had my PET scan uneventfully, though there was a slight hitch on the day. My scan involved the injection of a radio-labelled anologue of glucose. As metabolically active tissue, typically cancers, take up glucose a scan can then show where active cancer is present. The substance used (FDG) has a short half-life and in Newcastle and the North is delivered twice a day from Preston. I was telephoned on the morning of the scan to tell me the FDG hadn't arrived. Fortunately this was just a temporary delay but it did lead to some people having their scans cancelled.

I had an appointment last Monday with my oncologist to discuss the result of the MDT meeting. My hope was that the tumour would have shrunk away from the vessels and the bone metastases rendered inactive by the chemotherapy allowing the possibility of surgery. This was of course a long shot and I was disappointed but not particularly surprised to learn the tumour remained inoperable both because of the bony mets and also the continuing involvement of the mesenteric artery. What was more disappointing was the lack of treatment options. Further chemotherapy would be secondary and would have to await the recurrance of symptoms. There was the possibility of experimental treatment and also of radiotherapy to ablate the metastases. My oncologist said that she would seek advice from a radiologist about the suitability of stereotactic radiotherapy (cyberknife), and was supportive when I mentioned again my interest in treatment with irreversible electroporation (Nanoknife). I got the impression that she had mentioned this in the meeting to a rather negative reception.

The following day I sent an e-mail to the Hospital seeking an appointment thinking to receive one perhaps in the New Year. I then went for a game of racquetball the first in nearly a year, it felt good to be back on the court. I was amazed to find an e-mail on my return offering an appointment the next afternoon. I was able to contact my liaison nurse just before she left and she was brilliant in organising the transferring of the scan data onto discs so we could collect them the next morning. The meeting itself was very positive. The PET scan found only one area of bone FDG uptake which would need treatment with radiotherapy, and the report reads "no FDG active lesion in the pancreas" The upshot is I am listed for treatment with the Nanoknife on 8th January. It isn't a cure but a survival of some 2 years was mentioned. More importantly it gives me hope which was in short supply after Monday. It seems scandalous that this treatment isn't available via the NHS

At the moment I feel in very good health, I have started back in the gym though it will be some time before I am back to anywhere near my previous fitness. The loss of sensitivity in my fingers and toes persists but my hair, eyebrows etc are returning. What hair I had was quite white but the new growth is dark. We had some very good news recently when a daughter announced she was expecting in May, which will be our first grandchild.

It's good to have these little milestones to aim for.

Mark

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

Re: My Journey So Far

Postby J_T » Fri Dec 13, 2013 1:44 am

Mark, I'm absolutely delighted to read such a positive update! Things are moving in the right direction for you and you feel *well*! That's the best bit. Getting back to life as it was however cautiously has got to be good.

It seems you have an excellent team around you and brilliant that you got the nanoknife appointment so quickly.

I wish you continued positive actions and good health, you have a lot to look forward to with a first grandchild expected in the new year, wonderful!

Julia x

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: My Journey So Far

Postby cestrian » Fri Dec 13, 2013 4:22 am

Hi Mark

Great news that your nano-knife now looks all organised for the near future it is certainly getting a good run out on the forum. Congratulations on the grandchild front - every future event is one more important incentive to us!

Your gym activities putting me to shame as I've gone from regular 80 to 100 mile bike rides to virtually zilch over the past 12 months! Time to get pedalling I think.

Very best wishes for your treatment, your "hair" comments made me smile as one of my "things to be glad about" is that I had no hair to lose but actually the chemo has caused no change to my "tonsure" or eyebrows!

Love and Peace

Mike

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: My Journey So Far

Postby belgrade » Fri Dec 13, 2013 9:53 am

Wonderful news Mark, it is so heartening to hear such positivity. My best wishes to you and your family,
Hilary

PCUK Nurse Jeni
Posts: 1085
Joined: Mon Jun 14, 2010 1:30 pm

Re: My Journey So Far

Postby PCUK Nurse Jeni » Fri Dec 13, 2013 10:25 am

Hi Mark,

What fantastic news you have had! This is really brilliant! So very pleased for you. Thats great about the speed at which you were contacted by the nanoknife guys! Very efficient. But I think they are a very efficient team, and the waiting lists in the private sector are so much shorter.

Also how wonderful about your first grandchild! Amazing! Well, yes, what a lovely positive milestone to aim for. You will be a wonderful granddad! Such lovely news before Christmas!
Mark - you are an inspiration! I think your positive manner is helping enormously too - very nice to see you last week as well.

Stay well, and enjoy those ball games!

Kind regards,

Jeni.

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: My Journey So Far

Postby Slewis7313 » Fri Dec 13, 2013 10:51 am

Looks like the good and bad news scenario Mark, but with the good news outweighing the bad this time. Your update is also interesting as I had a very positive review with my Oncologist yesterday to see what options are available after my failed Whipples. They look similar to yours, so I will watch with great interest and update my own thread today.

Have a great Xmas and good luck with the Nanoknife.

Steve
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