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This cruel disease


KeithKerry
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Hi KeithKerry,

Happy for you to contact me, Jeni has my email and I am happy to share with you. Re Heidelberg, it is really easy, they have a contact form you can fill in. This link will take you there.

https://www.heidelberg-university-hospital.com/diseases-treatments/endocrine-and-metabolic-diseases/diseases-of-the-pancreas/

I filled in the form, sent them my CT scan and anything else and they come back within a week. In one week their immediate response was 6 rounds of Folfirinox, re-scan and then re-submit to them. It is worth doing just for a second opinion.

I also spoke to Jeni yesterday about Nanoknife and Protonbeam therapy and she was extremely helpful, so do use the help line. These are also options that I will be exploring.


I too have made great progress in the last couple of weeks, although I am still on an almost vegan diet, I have managed to gain 2kg in weight this week. This is partly due to me realising that I have suffered a lot of muscle loss to both my legs and my bottom, (which has disappeared), so I have been on the exercise bike. I have done 35 miles in 5 days, including 10 miles yesterday and today. Body is recovering well, and apart from sweating buckets I felt as fit as a fiddle.


Met with my Oncologist today, which I will post separately, and on for Chemo round 4 tomorrow. I am thinking of getting a mug printed, instead of "Keep Calm and Carry on" to "Keep Hoping and Carry on" to present to him ..... :roll:


Virtual hugs to you and your brave daughter,


Toodotty.

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  • 1 month later...
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Thank you for the information Toodotty. Also thank you to you too Jeni. This forum is a great place to come to and is one my favourite places to visit when I'm feeling a bit lost and overwhelmed.


I'm not in the least bit superstitious, although I haven't posted here for a while for fear of jinxing things. I am also not at all religious, but I have prayed to everything and anything for some positive news. We had a snippet of good news just over a week ago. The tumour markers dropped from a little over 6,000 to just over 200 in around 8 weeks. The first drop was >5000 in the first month alone.I did not want to share that at the time for fear of jinxing things.


Today we had the results of the first scan since the baseline scan in April. Most of the suspicious nodules in her liver have gone completely, there's just a small number left now. The largest patch on her liver has shrunk from 3cm to 2cm, the other patch has shrunk from 2cm to 1cm. The primary tumour (3cm x 3cm) has not changed in size since March. But the most important thing is that it has not grown and appears on the scan to have lost some of its density.


I had no idea that my daughter had tumour markers that were that high. I am glad that I did not know because I think that at the time I would have freaked out about that and so would she. We did not know about the nodules, only about the two patches on her liver. Likewise I am glad that we did not know at the time. This was probably one of those times when just enough information was just enough.


So, another 3 months of Gemcitabine and Abraxane, and then another scan to see what is going on. The only side effects that my daughter has experienced through all of this is some tiredness and diarrhea, both of which appear to be a result of the chemotherapy. She is eating really well and very slowly gaining weight. Apart from that she goes on with her life in the same positive way.


She is my little hero and she knows that she is dearly loved by all of her family. Onward and upward.

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PCUK Nurse Jeni

Hello Keith,


Thanks for posting this absolutely fantastic news!


I am so happy for your daughter, and yourself, and the family - you have been amazing going through this together.


This really is a fantastic result - after 3 months of chemo! lets hope the next 3 cycles will make a good fist of the remaining cancerous areas.


A great cause to celebrate!


Very best wishes from all the nurses,


Jeni.


Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

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Hi Keith,

Indeed great news. The reduction in tumour should also mean that your daughter's digestion may recover a bit so hopefully less diarrhoa. My scan is on Monday, so totally understand the trepidation.

toodotty

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  • 5 weeks later...

Here we are again a month later. I hope those of you that were awaiting news of scans had positive news and that those of you with loved ones fighting this awful disease are staying strong as individuals and as family units.


So, fast forward one month and we're still a family of four, plus our four beautiful and precious grandchildren. Four and four makes eight. In the eighth month of the year we have news that our amazing daughter is still battling on and defying the odds. Her liver is now completely free of the disease and there is only scar tissue where metastatic tumours and nodules were just a few weeks ago. The primary tumour in her pancreas has shrunk even further. Lymph nodes around her pancreas appear normal. Tumour markers are now just low double digits above the accepted normal range.


No further weight loss, and a healthy appetite complete an absolutely astounding turnaround from March of this year. This is the best we could possibly have hoped for or even dreamed of from first line treatment in the circumstances. Obviously there is no cure for stage IV pancreatic cancer, but in the end you learn to accept and grasp the best that can possibly be had with both hands. Her quality of life is far better than any of us could have imagined it would be in the early days.


We have learned a lot as a family from this experience. It has made us stronger and brought us even closer together than before this happened. I have learned a lot about myself in the process as well. Our daughter has been a huge source of strength and inspiration to me and I continue to be humbled by her strength of will and determination to carry on with her life. It has caused me to change my outlook on life in an extremely profound way, both at work and at home.


We are a well grounded family and we understand fully about this disease. We have researched tirelessly and have learned much about what could have happened in the six months since we received the dreadful news. We understand that things could have been so different so very easily.


We can only hope that the positive news continues for as long as possible, but in the meantime we celebrate what we can when we can. Onward and upward.

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I was so happy to read your post and delighted your daughter is doing so well. It’s so good to hear some good news, it lifts the spirits and gives us fellow sufferers hope, the best medicine there is.


Love to your daughter, you and your family, I don’t need to say stay positive because you are! A positive mental attitude is a valuable tool and can keep you sane in this mad world.


Again, wonderful news, enjoy your weekend :D

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KeithKerry,

Absolutely delighted that your daughter is responding so well. Why wouldn't she? She is young, has a very supportive family and even reason to keep fighting to live. Keep writing your own story!

Toodotty

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  • 4 weeks later...

An update for anyone following this thread.


In late August we had the really good news of further shrinkage of the primary tumour on my Daughter's pancreas as well as the virtual disappearance of the disease from her liver. Today we had even better news!


There has been further 'significant reduction' in the primary tumour and her liver is clear, apart from scar tissue and one tiny 'area of interest' that is also probably scar tissue. So, although we haven't been given the magical 'NED', the scan has not been fully reported on yet and the initial clinical opinion is that there is little disease left to treat now and what may remain is currently dormant. Their belief is supported by the initial views of the scan and the now normal tumour markers.


Now we have a complete break from chemotherapy for 3 months and then another scan to see if anything has changed, with the caveat that if tumour markers go up significantly again or my Daughter experiences any return of symptoms or other possibly connected illness she is to contact the Oncology department immediately and they will review that straight away.


For those of you that are going through this or have experienced this in the past, I'm sure that you will understand the mix of tremendous relief but some trepidation as well. The chemotherapy is your battering ram. It is your weapon for fighting back. It is your beacon of hope. Not having that is going to be an unnerving experience.


But, it does mean a number of very positive things. It means that my Daughter does not have to give up 3 Fridays out of every four of her life to spend what usually amounts to a whole day at the hospital. She can have her PICC line removed for now if she wishes. She can go away on holiday with us without either feeling drained by the effects of the chemotherapy for the first few days, or having to come home a day early because it is treatment day. It means that her hair, eyebrows, and eyelashes will have a chance to grow back. It means that she can have a return of some semblance of normality to her life for a few weeks.


As a family we have learned that the few days leading up to a staging scan and then the week or so waiting for the results is a profoundly harrowing time when quality sleep is more or less impossible to come by and we can think of little else other than what we might or might not hear from the results. But, we have also learned that for a few blessed weeks after the results have been communicated and discussed with us that we can have something of a break from the bulk of the fear and worry. Even though it doesn't stop the horror of it all bludgeoning its way into our uppermost thoughts at times, we can have some semblance of respite from the gnawing fear and dread of the future.


When I first got the news that my Daughter had inoperable incurable life limiting cancer (I still cannot bring myself to type or say the 'T' word) my mind completely rejected anything other than a complete cure and normal life expectancy for her. She is so young at 35 and has 3 even younger people that need her and depend on her for absolutely everything.


But I had to get my head around what had happened, and if you had offered me this news 6 months ago once I had finally done that, I would have pulled your arms (and legs) off to have it.


Onward and upward we go!

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Hi Keithkerry,

That is indeed wonderful news, it is good to have something positive on the site for a change. Even better to get some normality back to your daughter's life.


Sending you all a big happy hug,

toodotty

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Excellent news. We all got the scanxiety (as we called it) before results. Enjoy this moment, enjoy your holidays, enjoy your family. I know you will be concerned her not having chemo but it is only now (that I am not a rabbit in the headlights) that I really understand the science of it. If it is not active, it is not taking in the chemo and people can have a relatively long time in this stage. There has though been some chat regarding some intermittent/monthly chemo to help keep it at bay (I don't think it is fully proven) but if you want to look into it the I would call PCUK nurses who I am sure will message me if they do not want me to give rubbish advice!


Have the most wonderful holiday,


DG

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Dandygal76 wrote:

> Excellent news. We all got the scanxiety (as we called it) before results.

> Enjoy this moment, enjoy your holidays, enjoy your family. I know you

> will be concerned her not having chemo but it is only now (that I am not a

> rabbit in the headlights) that I really understand the science of it. If

> it is not active, it is not taking in the chemo and people can have a

> relatively long time in this stage. There has though been some chat

> regarding some intermittent/monthly chemo to help keep it at bay (I don't

> think it is fully proven) but if you want to look into it the I would call

> PCUK nurses who I am sure will message me if they do not want me to give

> rubbish advice!

>

> Have the most wonderful holiday,

>

> DG


Thank you Dandygal76 and Veema for the words of encouragement.


The PICC line was taken out, a move greatly encouraged by the Oncology team. They're a wonderful bunch and have helped to keep my Daughter and the rest of the family positive and focused on getting well and looking after each other. They have celebrated each small milestone with us and you can see that their joy is genuine. The nurses in particular seem willing to take every step with you.


This is a milestone that I was never certain that we would reach, far from it. Six months since diagnosis and here we are with the visible cancer all but gone and whatever traces are left being dormant. A 3 month break from chemotherapy now. No PICC line to worry about and every Friday back as just a regular day in the week.


This has provided an incredible lift for the whole family. We can even dare to try to forget about cancer for now and have 3 months of some kind of normality in our lives. We have a family holiday planned for the middle of October which I think we are all going to enjoy just that little bit more now.


My Daughter is absolutely delighted and seeing her come out of the clinic with a genuinely full and entirely carefree and relaxed smile on her face again filled me with tremendous joy and affection. I will admit that I cried. I just simply could not keep the emotions in.


That's not to say that things have left my mind completely. The worm of doubt is still there doing its thing, making the idea of 3 months without chemo a terrifying prospect. But I do feel relaxed for the first time in what seems forever.

Edited by KeithKerry
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toodotty wrote:

> Hi Keithkerry,

> That is indeed wonderful news, it is good to have something positive on the

> site for a change. Even better to get some normality back to your

> daughter's life.

>

> Sending you all a big happy hug,

> toodotty


Thank you toodotty. I am following your own story very closely. Especially as you were diagnosed around the same time as my Daughter and have tumours in the same places.


You've probably already watched this video. But when I get really down I watch it and remind myself that some people do 'beat the odds'. This lady is an almost 20 year survivor of stage IV pancreatic cancer. Despite her having the BRCA 1 & 2 genes it seems as if she only had chemotherapy that she supplemented with lifestyle and diet changes.


https://letswinpc.org/my-treatment/2018/04/13/reimagining-the-possible-survive-pancreatic-cancer/


I hope you keep on moving in the right direction toodotty.

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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

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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 xx 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

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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.

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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 xx 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.

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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

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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.

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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.

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