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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Proud Wife
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: My Journey So Far

Postby Proud Wife » Sat Feb 06, 2016 10:14 am

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

Re: My Journey So Far

Postby Ruthus » Tue Feb 09, 2016 12:28 pm

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

Re: My Journey So Far

Postby MSH » Sun Mar 20, 2016 4:04 pm

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

Re: My Journey So Far

Postby J_T » Mon Mar 21, 2016 11:03 pm

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
Posts: 1021
Joined: Mon Jun 14, 2010 1:30 pm

Re: My Journey So Far

Postby PCUK Nurse Jeni » Tue Mar 22, 2016 2:54 pm

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
Posts: 1033
Joined: Thu Oct 31, 2013 5:38 pm

Re: My Journey So Far

Postby sandraW » Tue Mar 22, 2016 8:32 pm

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

Re: My Journey So Far

Postby MSH » Thu Apr 14, 2016 10:55 am

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

Re: My Journey So Far

Postby Didge » Thu Apr 14, 2016 1:27 pm

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

Re: My Journey So Far

Postby J_T » Thu Apr 14, 2016 3:24 pm

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
Posts: 223
Joined: Tue Nov 19, 2013 9:30 am

Re: My Journey So Far

Postby RLF » Thu Apr 14, 2016 3:30 pm

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
Posts: 1021
Joined: Mon Jun 14, 2010 1:30 pm

Re: My Journey So Far

Postby PCUK Nurse Jeni » Thu Apr 14, 2016 4:07 pm

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
Posts: 34
Joined: Fri Mar 04, 2016 5:21 pm

Re: My Journey So Far

Postby Paige » Thu Apr 14, 2016 7:16 pm

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
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: My Journey So Far

Postby Dandygal76 » Tue Apr 19, 2016 9:15 pm

Hi Mark, I assume you are in overnight tonight. I was thinking of you as we were in Harley Street today and near the Princess Grace. 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
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: My Journey So Far

Postby Proud Wife » Tue Apr 19, 2016 11:43 pm

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
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: My Journey So Far

Postby Dandygal76 » Fri May 06, 2016 10:11 pm

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