My Journey So Far

[Proud Wife]

Dear Mark

This is the first time I've posted on your thread but Sir, I take my hat off to you!!!!!!! You are absolutely amazing and a real inspiration. My husband doesn't like to dwell on his PC and we don't talk about cancer very often in our house but I've told him all about your story!

Have a wonderful holiday - you so deserve it xx

[Ruthus]

I am so pleased to hear your update and response to Gemcitabine Mark. It's fantastic news! I'm also very encouraged that you maybe having nano knife for a second time. I have read this procedure can be repeated. I will be very interested to hear how this go's.

I am currently sat having my 4th chemo treatment. It is likely it will be mid March when I have completed 6th treatment and have mid cycle scan. I am having a PET scan. I am starting to feel bit anxious about the results and fingers crossed there has been a good response and more importantly no spread. After my initial CT scan and biopsy I was given the diagnosis, stage 3 locally advanced PC with no spread but not informed if there was any lymph node involvement. I am assuming this will be determined at the mid point scan.

I have only had feedback re CA-19 markers after my 2nd treatment and they had reduced from 390 to 270, so heading in right direction. Since my 3rd cycle of treatment I have felt well and had more energy. I hope this follows same pattern after my 4th treatment. We plan on going to Spain next week as a family which means it will be 3 weeks between my 4th and 5th treatment. I hope this doesn't effect my response to treatment.

My appetite is good and I have gained half a stone in the past few weeks. I'm naturally petite so this is good although I don't want to keep gaining weight as at good healthy weight. I look forward to more cycling in Spain.

[MSH]

I had a very enjoyable week skiing in Val d'Isere. If anything there was too much snow, we got well over a metre when we were there, and at times conditions weren't too good. One day in particular I suffered after feeling my lack of fitness and anaemia, but in the main an excellent week. I was interested to note that when booking Diane's insurance (£11) the website brought up some options for me. Unfortunately the cheapest was £2000 so I passed and resolved to avoid the black runs. After the success of skiing I had the confidence to book flights to California so we leave for almost a fortnight at the end of this month. I should manage as I can't say I have any direct problem from the tumour. My neuropathy is more like an old friend now and the bloating is much improved after using a couple of activated charcoal capsules. I continue on my pain killers but don't have pain and it's probably more force of habit.

After returning from France I had a CT scan 3 months after starting Gemcitabine followed by an oncology appointment. Here I was pleased to learn that the tumour had apparently shrunk, and in particular that there were no new deposits. The plan was to have a further 3 months chemo and then explore possible further treatment with the Nanoknife. As we all know this disease is one big roller-coaster and only a few days later I learned that the biomarker CA19-9 which had dropped to 1300 or so, had climbed to over 2000 again. With this development, to my mind if I have the Nanokife it will be better sooner rather than later. Fortunately professor thinks it is suitable for further treatment, and I am pencilled in for the 19th April. He said last time it wasn't a cure but might give me 2 years. Another 2 years would do nicely

I just want to say a few words about Steve Lewis. There aren't a great many patients who post about their struggles with PC on this forum, and there is a certain kinship amongst those who do. We get used to losing people along the way, that's the nature of the beast. Steve's death was particularly poignant for me. He was a similar age and our paths were roughly parallel. I recall talking to him one evening shortly after I joined on a live chat event. Somehow the days seemed more hopeful then. As I've said, this place won't be quite the same.

Mark

[J_T]

Once again Mark, great to hear so much positivity from you. What fantastic holidays you are having and long may it continue, think I need to get booking something myself!

Good to hear you can go ahead with Nanoknife sooner than later. Your treatments and therapies have worked so well for you!

Hope you enjoy your Californian sojourn.

Very best wishes Julia x

ps, yes we're all going to miss Steve very much, he was a great guy. x

[PCUK Nurse Jeni]

Thanks Mark as ever - you are the "forum inspiration", following in Steve's footsteps.

Your tribute to him is lovely, and fitting. And of course, we remember the days of live chat Mark!

We had a few good evenings on there!

Kindest regards, and the very best for all your upcoming treatments.

Jeni,

Pancreatic Cancer Nurse Specialist,

Pancreatic Cancer UK.

[sandraW]

Hi Mark,

Great news that you are doing well and that you enjoyed your skiing, and with California to look forward to.

Also good news about the Nanoknife lets hope it knocks those pesky CA19's for 6. take care Sandrax x

[MSH]

When the NHS comes under discussion there are a number of people who claim that it could be improved by taking on features of an insurance based system as used in Europe. Whenever such claims are made I am reminded of just how such a system works for travel insurance. For our recent trip to California my wife was able to choose between several policies, whereas a person who might actually make a claim such as myself is unable to find a policy at any price. The people who actually need such policies are deemed to be too high risk. A similar thing happens with health insurance when a person ages. At a certain point they are seen to be uneconomical and are priced out of the market. Such is the tension between the caring and profit motifs.

So it was that I once again headed for the New World taking a calculated risk. I've done it before, but I don't think I'm quite as well as I was. I was unsure about going right up to the point of departure, reasoning that I could always back out even at Schiphol airport. I had thought that the difficulty would be travelling and once there I should be as well as usual. This proved to be the case. I vomit very occasionally, perhaps every four to six weeks. The transatlantic flight was complicated by increased bloating which I suspect may be down to the lower pressure. The journey through LA to our holiday destination was difficult as we were caught up in the rush hour(s) traffic. On arrival I had a drink and slice of bread and then copiously vomited.

I was fine if somewhat hungry the next day, and the rest of the holiday passed uneventfully. It's a beautiful setting and we managed to get several desert hikes done. One notable walk at the top of the aerial tramway was done mostly on snow, which really brings home the effects of altitude. The return journey can only be described as difficult. It's a nine hour plus flight so it isn't easy at the best of times. I quickly developed an abdominal pain somewhat similar to that I had coming back from Gatwick after our skiing holiday. I slept little and was unable to concentrate on any distractions. It made for a long flight. It was good to arrive home but despite taking Oramorph the pain persisted all day. It was therefore a relief to wake this morning entirely free of pain.

I have a busy week ahead. Tomorrow I start my fifth course of Gemcitabine and next Tuesday I travel to London for my second treatment with the nanoknife. We are none of us promised tomorrow but for most of us it's a reasonable assumption. On that day I will turn 62. I was 58 when first diagnosed. At this rate I might even get to collect my state pension.

[Didge]

Good luck with the next round of treatment, Mark. You are doing so well! As for reaching state pension age, if only they didn't keep moving the goal posts!

[J_T]

My money is on you getting your pension!

Glad you enjoyed your holiday overall, that's what it's all about, getting out there and you certainly have some adventures, some more pleasurable than others clearly!

Very good that you are now pain free and with all your treatment planned you can only go forward from this point.

You are quite remarkable.

Best regards

Julia x

[RLF]

Great to hear an update Mark, you're doing amazingly well and it's always good to read about people living their lives to the fullest. Hope the rest of the treatment continues to help you and good luck with your ablations

Rob

[PCUK Nurse Jeni]

Mark,

You certainly do make the most out of every opportunity, and you certainly do push yourself!

As JT has described you as, you are remarkable!

Thank you for your continued support to others on the forum, and your brilliant updates, and unique writing style!

It is pretty amazing that you will be soon celebrating your 4th year of diagnosis - as others have echoed, lets cross the fingers for the pension!

I hope this week goes OK Mark - certainly a busy one after a full holiday as well. Sorry that you had the pains on the flight home, that can't have been easy.

Wishing you all the best Mark.

Jeni,

PC Specialist Nurse,

Support Team.

[Paige]

It is great to hear that you are doing well and are able to stay active and still able to go away to the places you enjoy. My Dad was always keen to read your updates and I know he would have been so glad to hear how well you are doing, heading into the fourth year of diagnosis is incredible and long may it continue! All the best for your next nanoknife treament.

Paige

[Dandygal76]

Hi Mark, I assume you are in overnight tonight. I was thinking of you as we were in Harley Street today. I came on here to see how you did with the 2nd NanoKnife... I am looking forwards to your update! I hope it was successful for you.

[Proud Wife]

Snap! Looking forward to reading your update Mark. In the meantime, a very happy birthday to you. If anyone can reach pension age with PC, you most certainly can. I hope you have not found chemo and nanoknife too grueling. You are a real true inspiration to us newbies.

All the very best

PW

[Dandygal76]

Hey Mark, I wanted to share this for when you are back on here and before i go for a while. I know it would interest you, and PW who I am sure will read it as well (it is a quote from good source)...."Someone asked a question about the survival rates for people who have pancreatic cancer (adenocarcinoma), including those who have Whipple operations to treat the cancer. I follow medical developments pretty closely, and have met personally with the top people in the pan can world (including the founder of pancan.org and a leading researcher at Johns Hopkins on pancreatic cancer). I want to share what I have learned in recent weeks.

There are standard, often cited statistics on survival. They are really not worth looking at now. The statistics are incredibly unreliable as predicators of what people with pancreatic cancer can now expect.

Pancreatic adenocarcinoma is the worst kind of cancer. The statistics for the disease are abysmal. The overall five-year survival rate is about 7%. For those lucky enough to be able to have a Whipple operation to remove the cancer, the five-year survival rate is about only 25%. Three out of four people who are able to have a Whipple have not survived five years.

But the news is actually much better than the statistics suggest, for two reasons. Please read this and take it to heart.

First, these statistics do not reflect the recent advances in survival provided by the most common chemotherapies used today (Folfirinox and Abraxane). There are not yet statistics which show how much these chemotherapies have improved the lives of people with pancreatic cancer. It takes five years to have five-year survival statistics, and we don't yet have those statistics. Early reports demonstrate real improvements in survival as a result of these new chemotherapies.

Second, these statistics are not very useful because they do not reflect the coming advances due to immunotherapy.

Immunotherapy has been much in the news the last few weeks. It is the biggest development in cancer treatment in 50 years. It has the potential to change pancreatic cancer from an inevitably fatal disease to a chronic condition. These are not my words; these are the words of one of the world’s leading pancreatic cancer researchers. There are promising immunotherapy clinical trials in several places around the country.

Now I'm not saying that immunotherapy will definitely revolutionize the fate of people with pancreatic cancer. There have been disappointments in the past about advances in cancer treatment. But there is now greater reason for optimism than ever before.

So what should we make of this information? Two things.

First, people with pancreatic cancer, and those who love them, should not be discouraged by the standard statistics on survival. They are outdated, they are unreliable. They are not particularly instructive on what people now diagnosed with pancreatic cancer can expect.

Second, the key for those with pancreatic cancer is to stay alive, and get the best care possible. If we can do that, and be around when immunotherapy is available for general use, there is the potential for long-term survival. There is hope."

From me (Dandygal) I go with the Diserali view of life.... there are lies and there are damn lies and then there are statistics. All the best and I hope with all my heart you are the last person on the 'median' of statistics. x

[Ruthus]

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 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]

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]

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]

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]

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]

Hi Annette

I will email the nurses now to request your email and email you this afternoon.

Many Thanks Ruth x

[MSH]

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 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]

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]

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]

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