My Journey So Far

[Slewis7313]

Melinda, I have just realised how insensitive (and stupid?) my earlier comments were. I really do apologise and hope my friends on this forum with experience of your issue can help.

Good luck!

Steve

[MelindaEverettutu]

Melinda, Maybe this can help you www.dysarthria.co.uk .Hope you get well . All the best

[MSH]

Well I finished the course of 12 Folfirinox last month. All in all it wasn't too bad, though I am just about managing to cling on to the last of my hair and I have a tingling in my fingers and toes caused by a peripheral neuropathy. This has always followed the chemo but usually went before the next course. For the last two courses it persisted causing some difficulty with things like buttons. I now have a few weeks off chemo, which I'm looking forward to.

I had another CT scan my 5th after completing the chemo and there is an obvious shrinkage of the tumour. This may give me the option of surgery except for the bony mets. To see if they have responded to the Folfirinox I am awaiting a PET scan at the end of this month. This will be followed by a multidisciplinary team meeting after which I will see the surgeon or oncologist as appropriate.

I continue much the same, my appetite always good has resulted in me gaining almost a stone which I am in the process of losing albeit slowly. I have not needed a pain killer in over 6 months, in fact it is easy to forget I have pancreatic cancer as for months I have had only the side effects from Folfirinox. I continue on Creon though the odd time I've missed one perhaps when eating out doesn't seem to make much difference. My CA19-9 has now dropped to 90 so the temporary rise to 853 back in August is a bit of a mystery. I'm thinking of using the time until the PET scan by taking a holiday perhaps in Turkey after learning a little of the Ottoman empire.

My best wishes to all affected by this disease.

Mark

[cestrian]

Mark

That's great news and long may your good progress continue! It's always heartening to hear of someone who is keeping this curse at bay and I'm sure we all support you in hoping and praying that surgery may become an option for you! Very best of luck and all good wishes. Enjoy your "time off for good behaviour".

Love and Peace

Mike

Lo

[J_T]

Wow Mark, that is excellent news! I really hope the PET scan brings more positive news for you.

I've only been to Turkey once but it has a stunning coastline and inky blue night skies - fabulous! I am up in your neck of the woods in a couple of weeks with my eldest son and family. Ray and I visited Northumberland for the first time a year or so ago and we had a wonderful time. It's a beautiful county.

Enjoy your well deserved chemo break, you must being feeling so pleased.

Julia

[Winkle]

Hi Mark,

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

Kathy

[Slewis7313]

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]

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]

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]

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]

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]

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/about-us/blog/archive/2013/january/the-is-team-explains-nanoknife-technology

One patients experience of getting it here - http://www.pancreaticcancer.org.uk/about-us/blog/archive/2013/may/the-tale-of-the-tumour-and-the-nanoknife

Steve's thread has some more http://forum.pancreaticcancer.org.uk/viewtopic.php?f=28&t=968&hilit=nanoknife&start=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/articles/PMC2989557/pdf/gn

and this is an interview with one of the leading UK experts online http://www.totalhealth.co.uk/clinical-experts/professor-edward-leen/new-cancer-treatment-nanoknife.

Sarah

XXX

Edited December 6, 2013 by InfoForMum

[PCUK Nurse Jeni]

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]

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

Sarah

[MSH]

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]

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]

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]

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

Hilary

[PCUK Nurse Jeni]

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]

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

X

[InfoForMum]

Fantastic news the good doctor has you on board Mark. Really pleased. As a surprising co-incidence my Mum's nanoknife procedure has been rescheduled and is now due to go ahead the same day as yours. Perhaps we will bump into each other while there. Will certainly be happy to share notes as to plans and outcomes if you so wish.

It's good to hear you have a supportive team. If you visit my thread mentionning nanoknife you will see the battle had with her consultants.

In case we don't cross paths have a fabulous Christmas and good luck with everything following.

Sarah

[MSH]

Thanks Sarah, our paths may indeed cross, XXX isn't that big. The good professor told me he had done 26 procedures on the pancreas, and that he had 2 booked for the 8th January but could do 3(not necessarily all pancreatic). At that rate he'll have done many more than 26 by the end of 2014.

Mark

[cestrian]

Hi All

A productive and positive meeting with my specialist on Wednesday.

Whilst he. and his colleagues do not really endorse nano-knife because it is relatively new and in their eyes unproven there was certainly no animosity towards it. I got the impression that their reluctance was enhanced by the treatment only being available privately, not wishing to be seen to encourage patients to spend large amounts of money on treatment that may or may not help. Anyway it's down to me apparently and they are perfectly happy to provide any scan results, reports or whatever is needed.

I am minded to take things gently ( not one of Steve's stormtroops). We are awaiting results of my Braca genetic tests which may open up another line of attack and, of course, at present I am feeling very well, still gaining weight and apart from the little rogue lesion in my lung all the other growths including the main bugger in my pancreas are all stabilised. I do intend to contact Prof soon after Christmas to see how he feels about the fact that the Cancer has spread to lung and liver and if this will prevent treatment.

In my terms I am on month two of my "second life" and I and my family are grateful for every single day we have together but are all determined to do everything reasonably possible to keep going. In the meantime I am just continuing on the Gemcitabine chemo at the excellent xxxx Cancer Centre where nothing is ever too much trouble for any of the nursing staff. Although I'm no longer on the clinical trial I am still monitored as I'm apparently part of the statistical data!! It does mean that the trial nursing team see me quite regularly as well as the ward staff who now actually administer my chemo.

Good luck to Mark and to Sarah's Mum - we'll all be cheering for you on 8 January!!

Love and Peace

Mike

[J_T]

Great stuff Mike, positive as ever and all sounds good.

Keep the faith!

Good luck to Mark and Sarah's mum in January.

xxx

[InfoForMum]

Thanks J and having just unwittingly posted something obscene on a new users thread, a fact Mark helpfully pointed out, I'm wondering if he did make it as far as the real dictionary definition, but called the urban dictionary one out for chucks (oh for a raised eyebrows, pursed lips and hands on hips emoticon). Either way made me laugh once I'd got over the absolute mortification and shock. My whole family take the rip roaring mickey whenever possible, so if it was a wind up watch out Mark I've had practice and will get my revenge!

On a more serious note, hope you're continuing to do well and feel well and are looking forward to Christmas.

Sarah

XXX