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Re: This cruel disease

Posted: Sun Oct 07, 2018 1:04 pm
by KeithKerry
kate2101 wrote:
> Hi,
> I’m so pleased to hear the brilliant news about your daughter. I know it’s
> always at the back of your mind but to get ‘normality’ back again must be a
> wonderful.
> I’m at the scanxiety stage at the moment (first since diagnosis) and
> worrying about every little pain and niggle, hopefully results Wednesday
> after a two week wait. Agonising!
> Love and best wishes to your daughter, enjoy your well deserved holiday!
> X

Hi Kate

I really hope with everything that I have that your scan results are positive. I vividly remember the first scan that my Daughter had following the commencement of chemotherapy. We have seen a number of different Oncologists since March. They're all very different people, understandably they have very different personalities as well. The Oncologist we saw just before the results were available was very 'flat' and almost sombre with his opinion that no growth or slowed growth was the best we could realistically hope for, with shrinkage being highly unlikely and an absolute bonus if it occurred. That's not a complaint, it was early in the treatment phase and nothing was clear to anybody about how things would go. We left that meeting feeling a bit deflated following that dose of realism.

The wait for the results was like living life in slow motion. I would imagine that you can identify with that?

The results were actually amazing. I mean literally amazing. Not just no growth or slowed growth, but visible shrinkage and the disappearance of some of the cancer.

I am no stranger to cancer. But this is different, and this particular cancer is different as well. I have found myself systematically forced to negotiate hopes of survival time downwards. Fiver years, three years, two years...please make it at least one year. Please. It's a harrowing and horrific experience for the loved one's of the patient. But I can only begin to imagine what it is like for the people themselves.

I really do hope that you can have a similar result to ours. Shrinkage and disappearance of most of the tumours with no active cancer to treat at the moment. I would imagine that everyone in the same boat would hope for similar. I sometimes still can't believe that I am literally jumping for joy at where we are now, compared to where we could have been. But you do learn to grab everything even remotely positive with both hands.

Re: This cruel disease

Posted: Sun Oct 07, 2018 1:23 pm
by KeithKerry
toodotty wrote:
> Hi KeithKerry,
> Thanks for the link, I haven't seen this link but it completely ties into
> what I feel about approaching any cancer. I have changed my diet, I am
> almost totally vegan and exercise on a regular basis (I did 70 miles over 5
> days on my bike last week.) Everyone thinks I look fantastic, despite
> having become totally grey with my hair just coming back. My skin glows
> and I am full of energy, I even had one nurse ask me yesterday if I was
> doing Botox!
> I have had a two month chemo holiday, partly forced on me by two episodes
> in hospital with biliary sepsis but I have bounced back from these and my
> bloods have remained pretty stable despite the infections.
> I have finally had my CT review which has shown shrinkage of all tumours,
> and some of them have disappeared on my peritoneum so this is positive
> news. So I am now back into chemo, Round 8 of Folfirinox yesterday which
> went well, feeling pretty well today the only side effect being the
> tingling of fingers and toes. Only four more sessions to go and then I
> might be able to get Nanoknife treatment on the pancreatic tumour. Also
> some time to review other options that are available.
> I have signed up for the GI talk at the Marsden in November, see what
> clinical trials might be coming up and whether it is possible to hang on
> long enough for these!
> I am so happy for you and your daughter, keep positive and enjoy every day.
> toodotty

That's incredibly good news!

Much of what we were told in March is a blur, so I can't remember the rationale used to choose Gemcitabine & Abraxane ahead of Folfirinox, which seems to be the usual first choice first line treatment. My Daughter remembers talk of Folfirinox and how hard it can be on the body and how much longer she would need to spend in the clinic on treatment days. I also recall the Oncologist saying licensing laws would change the options available for second line treatment if we chose something else (he did say the name I think and it may even have been Folfirinox) to try as first line.

I'm pretty sure it wasn't her ECOG score because she was still in good health then.

I have read your story about the Nanoknife. Has that option become available again? Or will you need to go outside of the UK to have it done?. Like you, I've looked to see what is available elsewhere. I sometimes feel quite bitter that in the US you can qualify for the Whipple's procedure in certain circumstances, even when stage IV. In the UK we don't have that option, mainly because of the low success rate and many patients still succumbing to the disease, sometimes before they have fully recovered from the surgery. There are also grave risks associated with the procedure itself. Although I have asked Theatre colleagues at work and they seem to think that serious complications from the Whipple's are quite rare.

I asked my Daughter if she would be willing to risk the procedure. I probably don't need to tell you what her answer was.

Re: This cruel disease

Posted: Sun Oct 07, 2018 6:09 pm
by Dandygal76
Just a quick look at the forum whilst waiting. If you are planning a holiday abroad go to Dr's and get some broad spectrum and very strong antibiotics etc. The doctor will know what to give so you have emergency things. You need an emergency pack - including extra creon to last a few weeks if hospitalised. And I am sure you have acquired some anti sickness etc by now. Just take it all. DG

Re: This cruel disease

Posted: Sun Oct 07, 2018 6:14 pm
by Dandygal76
Re Furry Fox. We made the same choice with dad... Furry Fox can be a second line treatment but I have not seen it for Abraxane. We just left it too late for Furry Fox when we should have changed when the CA19 markers started to rise 3 months prior to him dying. The rationale I think is right... just watch the markers. 5% don't have ca19 markers but if your daughter does then I would get these every 4 weeks from GP during your break. We were lucky we could request anything from our GP and that they were v supportive. I hope you have the same.

Re: This cruel disease

Posted: Sun Oct 07, 2018 10:04 pm
by KeithKerry
Dandygal76 wrote:
> Just a quick look at the forum whilst waiting. If you are planning a
> holiday abroad go to Dr's and get some broad spectrum and very strong
> antibiotics etc. The doctor will know what to give so you have emergency
> things. You need an emergency pack - including extra creon to last a few
> weeks if hospitalised. And I am sure you have acquired some anti sickness
> etc by now. Just take it all. DG

Thanks for the advice. We're staying in the UK but the whole family is heading to Spain in May (fingers crossed all is still well by then of course). I will keep this in mind.

Thanks again.

Re: This cruel disease

Posted: Wed Oct 10, 2018 10:40 pm
by 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.
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.


Re: This cruel disease

Posted: Thu Nov 01, 2018 10:28 pm
by 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.

Re: This cruel disease

Posted: Fri Nov 02, 2018 8:24 am
by 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

Re: This cruel disease

Posted: Sat Nov 03, 2018 1:12 am
by 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)

Re: This cruel disease

Posted: Sat Nov 03, 2018 9:35 am
by 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

Re: This cruel disease

Posted: Sat Nov 03, 2018 11:01 am
by 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.

Re: This cruel disease

Posted: Sat Nov 03, 2018 11:39 am
by 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??

Re: This cruel disease

Posted: Sat Nov 03, 2018 5:43 pm
by 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.

Re: This cruel disease

Posted: Sat Nov 03, 2018 8:37 pm
by 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.

Re: This cruel disease

Posted: Sat Nov 03, 2018 9:50 pm
by 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!