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Folfirinox Round 7


toodotty
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toodotty wrote:

> Hi KeithKerry,

> It is difficult not to worry about the big C even if it seems to have

> disappeared, it will always be there in the background. Your daughter just

> needs to listen to her body, any sign of change of digestion, even

> something as simple as "oh that seems to have given me indigestion,

> stomach cramps etc.", then it is time to get it investigated. I think

> my biggest fear is falling off the conveyor belt, given the difficulty of

> getting onto it in the first place. Make sure there is a quick route back

> to the Oncologist in the event of any worry. As time moves on, then there

> is less chance of the cancer returning and you never know your daughter may

> become a "complete responder" where the cancer disappears without

> a trace. I met a lady who has had PC 7 years ago and this has happened to

> her, she didn't look like superwoman but clearly she is!

>

>

> Erika


Thanks for the advice Erika, I have passed it on and stored it myself as well. I hope the "complete responder" tag applies to you as well. There are several similarities between yourself and my Daughter in terms of how you are responding to the treatment in particular. I am following your battle very closely, I'm sure I speak for others when I say that you are an inspiration to other PC sufferers. I hope the Nanoknife treatment becomes a successful reality. We want to pursue that avenue as well if we can, as well as others that you have mentioned. All we need is to be able to get to speak to someone!


It's wonderful to have reached this point where there is no active cancer left to treat and to have a treatment break of 3 months at least. But with that has come the situation where we have not been able to discuss the results of the most recent scan 1-1, or what might come next after that. We've only been able to talk about any of those things with a very dedicated and passionate specialist nurse who is incredibly over worked and over stretched. She is only able to tell us so much and despite her reassurances that all is well from the last scan and recent blood test results, it's not the same as sitting with an oncologist who can field our questions directly.


We have no future appointments booked and nothing more concrete than a promise of a scan "in the New Year". I am working on that in terms of making a nuisance of myself until we get something more tangible, but it's tough going when we're already dealing with a traumatic event that has changed our lives forever. I can only imagine what it is like for you as your experience with the NHS has been less than ideal since day 1.


Keep plugging away and know that other people are wishing you well in your own battle.

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Hi Keithkerry,

That is worrying indeed that there is nothing concrete planned for the New Year. Write to the Oncologist first to express your concerns, if this doesn't work then complain, you should be able to write to the CEO of the NHS trust that you are under, or PALS, Get reassurance that your daughter's treatment is being properly monitored. What a shame nobody wants to find out why she has had such a great response, how are we ever going to learn and improve things? I am booked for Nanoknife in Florida next month, I have a meeting with Oncologist before then but not expecting any support.

Meanwhile I will keep campaigning for better treatment primarily for PC but also for all cancer sufferers.

Erika

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  • 2 weeks later...

Well Round 12 over and done. Had a CT scan on Wednesday and unfortunately they found some very small blood clots on the lungs, "nothing to worry about" but I am now on blood thinners which I am having to self inject daily, for the next 6 months ….. I didn't get to see my Oncologist at the last meeting, even though I had asked for this, but we have a meeting now in January after I have my Nanoknife treatment and a chemo holiday over Christmas. There is provisional agreement that I can continue with Folfirinox in January which is also hopeful.


Erika

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Erika, good luck lovely warrior. I hope these holidays not only bring you hope around the nano but also peace and happiness with your family in these times that seem so precious. My thoughts will be with you and routing you through to those 5 years that more and more seem to make. You are a strong lady.. you will do it. x

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Best of luck Erika. I really hope that the Nanoknife helps you. I wrote to my MP about getting faster treatment for PC patients and got a very nice and positive personal reply. That's a direct result of what you have started. You are a very brave and determined person that many others will take heart from.

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Hi toodotty(Erika)!!


Just wondering how you going? I have read your blog and find you nothing short of a superwoman!!!! More power to you ! I sincerely hope you are doing fine and fighting strong .


Sam x

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Hi Keith

I just want to say I have read all your posts and you and your daughter give me hope for my mum. I sincerely hope your beautiful daughter is doing alright. I know what it may Feel like to have all clear and to have this lingering feeling of this wretched thing returning.

More power to you and your daughter !!


Sam .

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Samsavan wrote:

> Hi Keith

> I just want to say I have read all your posts and you and your daughter

> give me hope for my mum. I sincerely hope your beautiful daughter is doing

> alright. I know what it may Feel like to have all clear and to have this

> lingering feeling of this wretched thing returning.

> More power to you and your daughter !!

>

> Sam .



Thank you Sam


It's been a little over three months since her chemotherapy break began. Tonight was the first scan since late August. We hope to find out before Christmas what the results are. A month ago her bloods were perfect. She has no symptoms, her weight has long ago stabilised. She is eating and leading a normal life.


I am terrified. But we shall press on. Common sense dictates that not much will have changed. But I won't rest until we have those results. Then we have to wait to see what the Oncologist has planned next. We have a wonderful specialist that has celebrated each milestone with us as we have reached it. That has helped us tremendously as a family.


I hope all goes well for your Mum Sam. My Daughter (Kerry) had an incredible response to Gemcitabine/Abraxane as a first line treatment. More so than we could have dared to dream when this first started last March. Like most people we read the prognosis and statistics on the internet before we got to see anybody and simply crumbled. I think most people do. To begin with it seemed as if there was no hope and no point.


But there is hope. If not of a cure, then of some means of fighting back against this horrific disease and getting some more time with our loved ones.


I hope your Mum is one of those that responds to treatment for a long time Sam.

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Keith and Dee, for making me cry ( I mean this in the kindest and humblest way) ! Guys you all are so awesome....... I have read your posts and your courage and determination.

If we can’t defeat this thing at least we will put up a good fight .

Thank you all for kind words and thoughts .

My mum is starting chemo (Nab-Paclitaxel/Gemcitabine, conventional chemo in Australia for pc )this Thursday, she suffers from depression and and the last 2 night have been a nightmare for her where she has been pacing the house in the am. My dad in tears too seeing her like that.

She wanted me to take her to emergency last night , so I took her there but we were there for 3 hours and not seen so mum decided to come back home.

I have told her of some coping mechanisms, I think once she starts her chemo she will be at ease.


Dee good luck with your mum’s break, needless to say you will make most of it with her during her time off from chemo.

Keith , you are a very logical man. With a father like you , I know how I would feel. I would feel confident and ready to take on whatever is coming . Good on you !


Please keep us posted .


Erika , (firstly sorry to high jack your post)I m sending you good vibes. I have read your blog and I m following your story.


Have a great day guys.

I m finishing up work on the 21/12 and then do the chemo trips to the hospital with my beloved mum.


Love and strength to all,

Sam xxx

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Hi all,


A positive story for you all....I met a lovely lady last week when I went for a CT scan. I’m sure she wouldn’t mind me saying she’s an older lady but she looked the picture of health. She was diagnosed 3 years ago and has had 10 x 6 sessions of folfirinox and now on a maintenance treatment, she also had nanoknife in London earlier this year. Her oncologist (also mine) was so pleased but also puzzled at her fantastic response she has re/tested the original biopsy and also repeated all the tests in case she was mis diagnosed initially and perhaps her tumour wasn’t cancer. No mis diagnosis, just a complete response like Kerry! Hope for us all!

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Hi again Sam


Nab-Paclitaxel/Gemcitabine is the 'good stuff' in my book. It's what Kerry has been treated with as a first line treatment and responded so well to with very few symptoms. Certainly no seriously debilitating symptoms anyway.


I'm glad you're going with your Mum for her chemo sessions. We attended every session with Kerry. She was very brave but also very frightened to start with but the company and moral support that she got from us and from the staff at the hospital quickly helped her through that initial fear. At the end of it she didn't want to stop going!


The other piece of advice I would like to offer you is to go into this with your Mum with your eyes, your mind, and your heart open. There is no cure and this is about pushing back at the cancer and prolonging life for as long as possible. I think that's the most difficult part of this but also the most important as well. It took me quite some time to come to terms with that. It hurt, and it still does. But without that acceptance it is going to be difficult to make the most of what time is left, whether that be weeks, months, or years. Enjoy the 'ups' and understand that the 'downs' are part of it.


We had the results of this latest scan very quickly (today in fact). A pretty mixed bag. There are signs of re-growth in her liver, paradoxically, what is left of the primary pancreatic tumour is still dormant and quite possibly even destroyed completely. Also, a number of lymph nodes have returned to normal size and appearance since late August.


This thing is insidious and it will always seem like 5 steps forward and then two steps backward. So, we have an Oncology appointment next Monday to find out what we can do next, whether that be continuation of the 'good stuff' or whether we have to go to the second line treatment or even a clinical trial.


Whatever it is, we will pick ourselves up, dust ourselves down, and start all over again.

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Hi again Sam


Nab-Paclitaxel/Gemcitabine is the 'good stuff' in my book. It's what Kerry has been treated with as a first line treatment and responded so well to with very few symptoms. Certainly no seriously debilitating symptoms anyway.


I'm glad you're going with your Mum for her chemo sessions. We attended every session with Kerry. She was very brave but also very frightened to start with but the company and moral support that she got from us and from the staff at the hospital quickly helped her through that initial fear. At the end of it she didn't want to stop going!


The other piece of advice I would like to offer you is to go into this with your Mum with your eyes, your mind, and your heart open. There is no cure and this is about pushing back at the cancer and prolonging life for as long as possible. I think that's the most difficult part of this but also the most important as well. It took me quite some time to come to terms with that. It hurt, and it still does. But without that acceptance it is going to be difficult to make the most of what time is left, whether that be weeks, months, or years. Enjoy the 'ups' and understand that the 'downs' are part of it.


We had the results of this latest scan very quickly (today in fact). A pretty mixed bag. There are signs of re-growth in her liver, paradoxically, what is left of the primary pancreatic tumour is still dormant and quite possibly even destroyed completely. Also, a number of lymph nodes have returned to normal size and appearance since late August.


This thing is insidious and it will always seem like 5 steps forward and then two steps backward. So, we have an Oncology appointment next Monday to find out what we can do next, whether that be continuation of the 'good stuff' or whether we have to go to the second line treatment or even a clinical trial.


Whatever it is, we will pick ourselves up, dust ourselves down, and start all over again.




Oh Keith , certainly understand what you might be going through.

Like you have articulated , I have with great difficulty now come to understand that one day PC will win .

But in the meanwhile, just to soldier on.


I m sorry to hear about the new growth. Certainly seems to be difficult news, but good to know you had the results come to you guys sooner than later.

Could you kindly let us know what happens with her treatment next? I know you will.

In the meanwhile I will be thinking of you both.

Like you have said , I will sure to make a point to make the most of the up moments .

Very heartening to know that the side effects aren’t too bad either of the chemo.


Chin up Keith , just know , that you are not alone , and I for one am drawing allot of courage from people like you , Erika, Dee and Kate .....


And may others on here ..... I read and read . Such brave stories .


Love and strength to all


Sam xxx

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Hi everyone, my you have been very busy whilst I have been away. Lots of good advice as always, sorry KeithKerry to hear that there are some liver lesions on your daughter's scan, don't be afraid of chemo. I have been better on the 2nd course because I was fit and well, whereas I was really quite ill when I went into the first round of treatment. Also, don't forget you have the strongest chemo still up your sleeve, which is Folfirinox, but if the previous treatment worked then why not continue with it? Also agree with accept the future, but ensure that you enjoy the here and now. Nobody knows what tomorrow will bring to any of us.

Re me, I have just returned from Florida this morning after having my Nanoknife treatment on the 12th. Everything seems to have gone really well, through it was a bit more gruelling than I had expected. Thankfully I am too old to wear a bikini these days as the scar is going to be very impressive! It won't cure me but it will keep the beast at bay and I have the satisfaction that the pancreatic tumour is well and truly dead. Plan now is to re-start chemo in January (Folfirinox) to nail any circulating cancer cells and micro-tumours already in place. Oh, and plan my Easter Cornwall walking holiday, exactly one year on from my diagnosis.


Keep positive everyone, never say never,



Erika

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PCUK Nurse Dianne

Dear Erika,


Thank you for continuing to be such an inspiration to many on this forum. Well done on all you have achieved and we hope that you are able to relax and enjoy your Christmas with family. I am sure your experience and strength will be a major inspiration for many others.


We are all have great respect of your strength and courage.


Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support line: 0808 801 0707

Email: nurse@pancreaticcancer.org.uk

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