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KeithKerry
Posts: 26
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Sun Oct 07, 2018 1:04 pm

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.

KeithKerry
Posts: 26
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Sun Oct 07, 2018 1:23 pm

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 ACOG 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.

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: This cruel disease

Postby Dandygal76 » Sun Oct 07, 2018 6:09 pm

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

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: This cruel disease

Postby Dandygal76 » Sun Oct 07, 2018 6:14 pm

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.

KeithKerry
Posts: 26
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Sun Oct 07, 2018 10:04 pm

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.

toodotty
Posts: 103
Joined: Sat Jun 09, 2018 4:17 pm

Re: This cruel disease

Postby toodotty » Wed Oct 10, 2018 10:40 pm

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