This cruel disease

[toodotty]

Hi KeithKerry,

I don't know if you have visited Phillip Jax's website which is packed full of the latest stuff. It is a bit chaotic but worth working your way around it. https://pancreatic.altervista.org/

The key message I have in my mind now is to plan for the next step and have lots of "irons in the fire" to action immediately. This is what I am now working on to see what options are out there. So, nanoknife may be on the horizon once I get past stage 12 of Folfirinox, Heidelberg is also an option. I what to look more at Chemothermia (Istanbul), etc etc, I am not ruling anything out. Statistically I only have a 10% chance of surviving the next 6 months under NHS treatment so I need to do whatever I can to increase my chances. And this doesn't seem to be sticking to NICE guidelines. I am also considering finding another Oncologist, I need someone more forward thinking and prepared to help me make the right choices.

toodotty

[KeithKerry]

Hi toodotty,

Thanks for the link. That site is pretty interesting and there are some interesting links on it.

I have not visited this site for a while, not long enough to post anyway. I hope everyone is doing well. Nothing to report here. A month into the chemo break, my Daughter has developed a huge appetite and on some days can't seem to get enough food inside her. She is in robust health and has no symptoms. I think the chemo break, whilst unnerving and quite frightening in some ways, is actually allowing her to enjoy life in a way that she has not been able to for quite some time. She certainly has more energy and looks incredibly fit and well.

Anyway, how about you toodotty? How is your story? And Kate and everyone else? I hope the news is still positive.

[kate2101]

Hi Keith

Brilliant news that your daughter is doing so well, I’m so pleased for you.

Quick update on me .... should have had number 8 Folfirinox last Thursday but my platelets were too low again so a week off for me. My CA19-19 levels are down again, now right at the bottom of the scale instead of being off the top when I started this journey, so I’m not too worried about a weeks break.

I have an added complication with my back. I thought ‘the beast’ had found its way into my bones but it seems I have 2 broken vertebrae, more than likely happened when I foolishly fell down stairs a few weeks ago. At least there’s no spread.

I’m getting all my records together and looking at future options. I finally got hold of my latest CT scan from the hospital this week, I now have to upload to computer, not straight forward as today’s machines don’t have CD drives so need to get external drive, why is nothing simple?

I’m feeling ok (apart from back!) but I know that won’t last. Like Toodotty, I’m investigating USA, Heidelberg etc. I refuse to lie down and give in!

Best wishes to your daughter and your family, so pleased to hear she is so well. x

[toodotty]

Hi All,

Firstly thanks to DG about meds advice, I had thought about antibiotics but not even considered Creon. I found out on the weekend that these cost £1 a tablet (regardless of size) so make sure you take enough for emergencies as well and keep them in the hand luggage as they are sensitive to temperature. Something else to consider is whether you look anything like your passport photo. I had a recent visit to Downing street and the policeman wouldn't believe it was the same person and asked for a second opinion. Not something I want to repeat after a 9 hour flight … We emailed the US embassy and they recommend a GPs letter explaining about the cancer treatment and hair/weight loss. So I am off to the photo booth tomorrow.

Re where next? Just finished round 10 of Folfirinox today, a bit queasy and not sleepy but otherwise fine. On top of my milk thistle I visited a zany homeopathist several weeks ago so I am also taking more alternative remedies. Side effects of chemo seem minimal, my hair is growing back, bloods are mostly looking fine and I am feeling OK. Maybe a placebo effect, but do I care!

Actively planning to visit a Dr Donoway in the US for Nanoknife in December. It is one of my irons in the fire, I am sure it must be a better option than whipple which is so invasive. But who knows, it is horribly expensive but the alternative of NHS pathway is not appealing.

And finally time to stop hiding behind my alias. Some of you will have already worked out that my real name is Erika Vincent. Some of you may also realise that I have been working with the fab people at pancreatic cancer for the last couple of months and I am now appearing in their campaigns for better treatment. We all deserve better and this will happen. Some of it may happen fast enough for even us to benefit.

best wishes, Erika (aka toodotty)

[kate2101]

Hi Erika

I am also thinking of Dr Donaway, I’ve had a couple of conversations with him. I finally got my latest CT scan disc from the hospital and need to send to him, I’m worried about my multiple liver mets but will see what he has to say, they have shrunk considerably which is good news. Is this where your instincts lie? It’s all such a risk but I think it’s one I’m prepared to take.

Kate x

[KeithKerry]

It would be good to know about all options abroad. Heaven knows how we would afford it, but I cannot simply let my Daughter slip away without having tried everything that is within our power to do. It's endlessly frustrating that in the US they still at least try to surgically prolong the lives of some of their stage IV patients. I doubt you would find any patient in the UK that would decline even a 1% greater chance of longer survival.

[kate2101]

It doesn’t seem fair we have to spend time and money to stay alive. Fortunately my life insurance paid out, I’m worried I’m not going to leave enough behind for the family but they want me to pursue all options and are behind me all the way.

The thought of travelling all that way for surgery is really scary but if I’m a suitable candidate and I go I will try and look on it as an adventure.

What’s to lose??

[KeithKerry]

I watched your video Erika. I signed the petition set up my donations and sent the link around to contacts to sign. Thank you so much from all Pancreatic Cancer patients for driving this Erika.

You're a brave person.

[Kerry]

I’ve just watched your video too Erica and have signed the petition. Your positive attitude never ceases to amaze me. You are an inpiritation to so many.

I completely agree about how treatment must start earlier and how this offers hope. I will never forget my dad’s reaction when the consultant told him he could have chemo and the hope this gave him.

[KeithKerry]

It seems that we were extremely fortunate as treatment started 3 weeks after we got confirmation of the horrifying diagnosis. However, I read an awful lot Pancreatic Cancer Facebook pages, forums, blogs, anything that I can get my eyes on and it does seem that in the UK we are frequently very slow to get our patients underway with treatment once a diagnosis is obtained.

Overall our experience has been really positive. Where it is falling down for us now is waiting to hear what happens next after the chemo break. My Daughter has no future clinic appointments booked for her and has had no letter officially detailing the results of the last scan. The best we got out of that was a very positive discussion over the phone about the results and a promise of a letter and further appointment bookings for more imaging and to discuss what might happen next when the three months is up.

That was a month ago and still no word and no appointment. We of course have lots of questions. We just don't have anyone to ask them of!

[toodotty]

Thank you both for signing the petition and passing it on. No wonder the survival rates are so terrible when 70% of people receive no treatment at all.

Keithkerry, you are at the stage I am rapidly approaching, what happens when I get past round 12 of Folfirinox? Having had to fight so hard to get treatment I am terrified of falling off the radar and not getting treatment quickly the second time around if the disease should come back aggressively again. I do feel perhaps because most people died before this stage that many Oncologists hit a bit of an impasse at this point because they do not have the requisite experience of PC. I am considering changing to a specialist PC centre who might be more up with the latest thinking, though this will be horribly disruptive if I have to travel to say Leeds for treatment. I am discussing this with my GP on Tuesday to see her thoughts.

And yes Kate I am in active dialogue with Dr XX in the US. What I like about him is that he views the disease holistically and looks to treat the whole body not just the pancreas. The Y-90 treatment for multiple liver lesions sounds really promising, and his views on diet and exercise resonates completely. I have learnt so much from his posts and his compassion towards other sufferers, I am really impressed by this. I will be posting something on the Nanoknife warriors website about my decision making process, there is still a possibility of the closed procedure in London after Round 12 but feel that this may not be the best option now.

And for the publicity, me brave, no I am just angry! I am horrified that this is the best that we can expect from the NHS. People are dying due to administrative errors, ignorance of condition by the medical profession and the false belief by our politicians that we are at the forefront of cancer treatment in the UK. Poppy-cock, we are about 5 years behind everyone else and falling even more behind with NICE being our silent enemy too.

There is still hope for all of us, but we are not likely to find it in this country at the moment.

Erika (toodotty)

[KeithKerry]

We are fortunate that our hospital is the regional centre for Pancreatic Cancer (and other Cancers). It's on our doorstep (my Wife and I have worked there for many years in admin roles). I do know that our MDT that covers PC meets every week to follow up on all patients and to make sure that they are all having the same level of treatment, depending on staging and suitability (or not) for surgery.

I think that if we can just get my Daughter's CA19-9 measured regularly she will stop fretting so much. She has no symptoms at all. Her hair is growing back rapidly and she has a voracious appetite. But she is constantly worrying that the cancer is going to wake up and start spreading again. Just having that one piece of monitoring done will make a big difference to how much she can enjoy this treatment break.

What a nightmare. So much to think about for the future. Most of it I don't want to think about until I'm forced to. For now I have to be the rock that my Daughter and my Grandchildren can look to for help and encouragement.

I can tell you as a long time employee that the NHS is indeed a mess in some ways, but it's all we've got at the moment. I do see so much good done in the hospital that I work in. But there is never enough medical staff and nothing like enough admin staff to run all of the theatres, wards and clinics. It is demoralising for the staff to have to see long waiting lists and to have unhappy patients.

A lot of people that work for the NHS really do care immensely. What the NHS badly needs is much larger investment and a good shake up of the senior management.

[Dee123]

Hi Keith. How is your daughter doing? Have you had any news on what happens next after her break? I hope you and your daughter and family are doing well.

[KeithKerry]

Hi Dee

We had a mixture of news from the scan. The primary tumour is still dormant and much smaller than it was. Some lymph nodes have returned to normal (that was a real boost!) but there are signs of either fresh growth in her liver or regrowth of original cells that were too small to see on the scan in late August.

We have an appointment on 24th December to see what happens next. Ideally she will go back to the first line treatment (Gemcitabine/Abraxane) as it was still working and the break in treatment was supposedly just that. A break. But there is so much conflicting information out there about that. Some people say you can have it "indefinitely" until the inevitable failure. Other people say that you can have of rounds of a particular treatment and then that's it. It's a horrific thought that a treatment that is still working would be withheld based on a set figure. But we shall see.

On Kerry's care plan she has an initial two lines of treatment. She is still in very good health, has a very healthy appetite and literally leads a normal life that is virtually free of symptoms. She doesn't even have any diarrhea (that is the worlds hardest word to spell. I gave up trying to type the British English version!)

I have kept a detailed diary since March. One overriding theme is that it is incredibly difficult to get to see people to ask questions. We have had to chase more recent appointments and for this most recent scan at the end of the 3 month break we had to make complete nuisances of ourselves to even get one booked. We have our Specialist Nurse, but to say that they are a "thin blue line" would be an understatement. She gives us whatever answers she can, but is honest enough to tell us that she can't answer questions outside of her field of expertise.

We shall see what happens on Monday. I will let you know.

[toodotty]

Hi KeithKerry,

Good luck for Monday. I did post a reply yesterday which seems to have got lost. If you want to contact me direct about Nanoknife, then please ask the nurses to pass on my email address. I am more than happy to share what experiences I have had.

Erika

[Dee123]

Hi Keith, sounds like mixed results from the scan but overall good news that she is in good health with a healthy appetite and leading a normal life.

We have been told that my mum can continue on the same chemo indefinitely but we will see what happens. She is hoping to be offered a break next month after the second set of chemo ends in January but that will depend on the CT scan result.

Good luck for tomorrow!

[KeithKerry]

Well, that wasn't as bad as I was dreading.

The 2nd line treatment is indeed Folfirinox of some variety but we are lucky enough to have got a place on a trial that has 50 % chance of including a second experimental active ingredient AM0010 which is a trial of immunotherapy, which I'm very excited about.

When we saw a Geneticist just after Kerry was diagnosed in March 2018 I was praying that she was BRCA1 or BRCA2 positive as that may have opened up the option of immunotherapy. She wasn't, so that was out of the picture. But now it seems as if she has 50% chance of having something along those lines again. There has been some very promising results in some people with regard to slowing the cancer down significantly.

There are no guarantees of course, as we all know with all of these treatments. There are risks with this trial, particularly with pancreatic enzymes being affected plus other side effects and concerns about Neutropenia which may mean that she cannot tolerate the treatment. But she is young and still strong and surprisingly well. Those things count in her favour considerably. I just hope that she is in the lucky 50%.

When either this treatment stops working, or doesn't prove to be effective or Kerry cannot tolerate it, they will consider putting her back on Gemcitabine again. I was mightily relieved to hear that having that again was at least a possibility in the future.

I asked about Nanoknife and got the answer that I was fully expecting. That type of treatment is only appropriate for a primary tumour that has not spread. I think we all get told that but I won't give up that easily.

Thank you to everybody for the kind wishes and messages of support. I hope you all enjoy Christmas as best as you possibly can. We will be doing so. Then we carry on fighting the good fight!

Thank you to all for your messages of support and kind wishes.

[Theresa Upton]

Hi Keith, how is your daughter doing, has she started the trail yet?

My thoughts and best wishes are with you

Theresa

[KeithKerry]

Theresa Upton wrote:

> Hi Keith, how is your daughter doing, has she started the trail yet?

>

>

> My thoughts and best wishes are with you

>

>

> Theresa

Hi Theresa

Despite being deemed fit enough to be considered for the trial, unfortunately Kerry's name was not one of those that 'came out of the hat' for the arm of the trial that includes the experimental drug. However, despite that disappointment she opted to stay in the trial to do her bit towards helping others in the future. I am so proud of her and how she has approached this awful situation since day 1 in early March of last year.

So, she gets the standard Folfirinox chemotherapy (which was her second line treatment anyway) which starts tomorrow. There are some other benefits to staying in the trial and giving up her time (not to mention blood samples!) in the form of scans every 8 weeks (instead of every 12 weeks) and the supporting infrastructure in terms of people to contact and talk to is greater than she would have access to otherwise. She stays with the same Consultant which is probably the most important thing to her overall.

Health wise she is great. It's somewhat surreal to sit and watch her eat bacon rolls faster than I can. She eats whatever she wants, frequently without Creon. Has no diarrhea at all, has gained weight and still leads a normal life, despite being 4 months without treatment now. The only thing she does notice is some tiredness, although that is not a new thing and has been present throughout.

How about you Theresa? How are you doing?

[Fernack45]

Glad things are going well Keith xxx

[KeithKerry]

Thank you Ann

I hope things have improved for Dan.

[Theresa Upton]

Hi Keith, I am so sorry but it is a good thing that Kerry has decided to be part of the trial and like you say the additional medical support will be a bonus. I am so pleased that Kerry continues to do so well, she really is an inspiration and gives hope to so many of us.

I am OK thank you, I have just had round 6 of folfirinox and my midway scan is tomorrow, like Kerry I continue to live quite a normal life although I have to fit everything around the numerous hospital appointments...….small price to pay. I have a few down days following chemo and although its difficult at the time the days soon pass.

My best wishes are with you all and I hope Kerry goes from strength to strength.

Theresa

[KeithKerry]

Thank you so much Theresa

The first day after Folfirinox Kerry was out shopping with her youngest daughter (wrapped up warm against the cold because of the risk of that particular side effect relating to cold air and cold surfaces), pump, PICC line and all. I love her "to hell with it" attitude. It keeps me going as well!

I hope your scan results are positive. Do let us know.

I note that a post on the Pancreatic Cancer UK Facebook page has a message from someone about Oxford HPB (UK) possibly offering surgery for stage IV patients that have good results from Folfirinox. I had to read it about 5 times to be sure that I was actually reading about an NHS Trust in the UK, rather than somewhere abroad like the US.

It won't be that simple and it won't be for everybody. But as the message says, it could be a ray of hope for stage IV Pancreatic Patients in this country. Nobody should be denied hope or something to aim for, even if they don't reach it in the end.

[Theresa Upton]

Hi Keith. Just a quick update, first things first, how is Kerry doing? I hope the chemo is going well, it is indeed a tough regime but I am sure her positivity and your support is keeping her going. I had my scan results last week which are pretty positive, my main tumour has shrunk by just over 50% and there has been a significant reduction in the liver mets. The plan is to continue with folfirinox, I have had round 8 today (4 more to go) 2 of the chemo's were reduced to 80% because of low platelets and something to do with the liver but I really could do with the break. I have also been referred for a trial that is being undertaken in Liverpool...…………..an immunotherapy phase 1 trial, I hope I am successful in getting a place. Look forward to hearing how Kerry is.

[KeithKerry]

Hi Theresa

Good news about your scan results! You seem to be taking a similar road to Kerry in terms of responding to treatment. She also had an essentially immediate positive response that was far better than the "no significant growth" that we were told to hope for. By the time she had completed 90% of the cycles her liver was clear of visible PC and the primary tumour was almost gone. After 100% and following 3 months off we then had that rather paradoxical result of a much reduced and and stable primary with some lymph nodes returning to normal, but fresh growth in her liver.

When she'd had time to think about it, she came to the conclusion that almost 9 months following diagnosis she was better off overall because the primary tumour was much smaller and some lymph nodes were now normal. There was still growth in her liver but less than could be seen in the first staging scan. If we had been offered that at the beginning of the treatment, we would gladly have taken it with both hands.

When you think about it, she is spot on with her analysis.

As for the present she is doing really well so far. It is harsher and she notices the difference between Folfirinox and the Gemcitabine/Abraxane treatment. She has some fatigue after the infusion and has experienced some small blood clots in both legs which caused painful cramping for a few days. She had to have the second dose after three weeks rather than the planned two weeks because of a mild infection but that cleared up quite quickly and she is back in the swing of it. She never makes a fuss about any of this. She injects herself with Dalteparin every day and just goes about her business.

Of course, we don't know if this treatment is working, but she still has no symptoms relating to PC and is still eating and living her normal life, including her social life, although the latter was reduced for a few days due to the infection and clots.

Tonight she is at home with her children eating fancy cakes and stuffing her face with fruit. I think the next scan is in 5 weeks time. Fingers crossed!