Hello from KATB

[KATB]

Hi all - I'm a new member and wanted to say hello and make some notes here about my dad.

My active, fit, well 61 year old dad was diagnosed with locally advanced PC 3.5 weeks ago now following a CT scan arranged due to jaundice and itching. This was shocking and devastating news for him, my mum, myself and my 2 brothers. Immediately following the CT he was seen by a renal doctor who gave the diagnosis and when asked by dad for the prognosis replied '2-3 months'. My first issue is with the, in my opinion, poor delivery of the diagnosis and prognosis - nobody was with my dad at the time and he was sent away with no information and no support whatsoever.

I will provide the 'story so far' in a nutshell:

Monday - CT scan and diagnosis

Wednesday - stent attempt by ERCP was unsuccessful

Friday - MDT meeting (from which we received no feedback)

Following Wednesday - PCT carried out successfully and 2 stents inserted

Post stent the jaundice began to disappear quite quickly and dad's appetite returned

Tuesday this week - meeting with oncologist who confirmed diagnosis, explained that surgery is not an option due to proximity to major vessels, explained why radiotherapy is not an option, discussed chemotherapy options - either gemcap or FOLFIRINOX

It's only been 3.5 weeks since diagnosis but already we are realising the need for strong advocates - we have pushed and chased for support, appointments, answers at every turn. The oncologist meeting was requested by ourselves - I have no idea when anyone planned on contacting us to discuss the diagnosis and treatment options. I'll leave that point there or else I will go on forever!

As things stand at the moment we are looking toward chemo and Dad is keen to try the FOLFIRINOX. He has a lost a lot of weight so far and the jaundice really wiped him out so the plan is to get that sorted (blood tests taken on Tuesday show his bilirubin is now down under 50 and all other parameters are normal) and to get him fitter again. We are focusing on a healthy diet and exercise in the coming couple of weeks before the next oncologist appointment, although that's proving to be a struggle as he doesn't have a huge appetite and he doesn't feel much like getting out and walking in these freezing temps! I think it will come though - he's still dealing with the psychological and physical impact of the recent diagnosis.

We are considering a 2nd opinion with regard to surgery as we have contacts at a specialist centre where the surgeons are more expert in this area - they may also say it's not possible but at least we will have explored that avenue.

We are also interested in finding out more about stereotactic ablative radiotherapy but I'm struggling to find much on that. I know it's not been used much in PC and therefore treatment won't be evidence based but we'd like to have a consultation to discuss whether it's even a viable option. Anyone got any advice on where to go next with that?

There are so many facets to the diagnosis from my point of view. I'm trying to get my head around the impact on my amazing dad, how my poor mum is going to cope and what will happen in the future, how I manage this with my own children over the coming months (they are 12, 10 and 8 and the 10 year old is due to sit entrance exams in September), how do I feel and how will I cope with it.....and so it goes on.

So far I am taking it one day at a time. I am spending part of each week at mum and dad's (they live an hour away) and the rest of the time I'm at home working and dealing with my boys. Luckily my husband's work is being understanding and allowing him time to do school runs while I can't be here. I'm lucky that I work freelance so as long as I have my laptop I can work anywhere. I am trying to stay task focused - doing what I can in a practical sense and trying not to think too far into the future. That's hard for me as I'm a planner and I struggle with uncertainty. We also have a holiday to Florida booked for the end of May - mum and dad were also coming and I know that's unlikely now. Will we still go? I have no idea.

I'm staggered at how little research is going on for this cancer type. I work in this field and constantly work on studies for other tumour types - prostate, breast, colorectal, melanoma, myeloma - not a thing on pancreatic. That needs to change and I'm already looking up runs to do to raise money for the cause! See, ever practical!

I hope I've not made this too long winded! Thanks for reading.

[KATB]

KATB - Kate and the boys

[suef]

Dear Kate,

I am so sorry to hear your news. You have done right to contact this group as you will get lots of practical and emotional support.

I had a tumour on my pancreas and had a Whipple operation in February 2010. The tumour proved to be non-cancerous and I have made a good recovery. I was working in Belgium at the time and had my operation at a university teaching hospital in Brussels. The diagnosis, operation and post-op care were fantastic.

Hence my suggestion. It sounds as if you are getting rotten treatment from the NHS. This may sound a bit extreme but have you thought of seeking help from a hospital in Europe? There have been excellent reports on this website of a hospital in Heidelberg, and I would be very happy to provide details of the hospital in Brussels.

Otherwise, it constantly emerges that NHS patients need strong advocates, so do push hard! Be polite - but VERY firm! I also suggest that you contact the Support helpline of this website, 020 3535 7099. They have medical training and will give you excellent advice.

Good luck & do keep in touch!

Sue F

[KATB]

Hi - thanks so much for your response Sue. Yes, I have read reports about Germany too - it does seem extreme but maybe worth looking into?

We have found out today that the tumour is 2cm but not an even shape.

Apparently dad feels good today - has eaten well and is going out for a walk (they live in the countryside so that's perfect).

I just want to get moving on treatment now to stand the best chance of shrinking the tumour.

KATB

[suef]

Hi Kate,

Glad your Dad is feeling better today. Those moments are precious.

I wish you much courage - and the strength to keep pushing to get your father the best possible care.

Thinking of you!

SueF

[DRAD3]

Hi Kate, welcome to the forum - I am sorry to hear of the circumstances of you having to, however and my heart goes out to you, your Dad and your family. It looks like you have had an extremely difficult few weeks. I am so disappointed to hear another family let down by the NHS, I do hope this improves but you will now know that you have to push, push, push constantly - not fair, I know but often needed. You will need every bit of strength you have but know that you are not alone and we will support you every step of the way. As Sue, suggested, do give the support team a ring (next week - they are off for the Easter weekend, I believe) they will be able to offer you their expert advice and give you lots of information about the treatment options - they are quite wonderful.

You are right this disease is under researched, under-funded, misunderstood and, I believe, ignored for too long, but don't get me on my soap-box! I have not had any experience of second opinions or looking outside of the NHS for treatment but there are other members of the forum family who have - I'm sure they will share all they have learnt with you.

You will have noticed already an improvement since the stent insertion - the blockage would have caused the jaundice and jaundice can make you feel absolutely awful - each day this improves, your Dad will feel better and stronger and hopefully his appetite will return. This weather is hard on the fittest of us, so I can understand his wish to stay indoors and for now he has a lot to come to terms with as well as a need to rest and recover from the effects of the jaundice, so no bad thing to stay at home for a few days. Such a difficult time for you all and you are like many of us who have been on the same road, you do just begin to take each day as it comes, whilst at the same time making plans so that there are goals and things to look forward to. Its an odd juggling act that life becomes but you sound like you are good at that already so I am sure you will be fine and on days when you're struggling, you know where we are. It is hard, but staying positive is so, so important and you will read lots of good news on the forum - especially lately so I do hope this gives you hope, Kate.

Take care of yourself won't you?

lots of love

Deb

x

[Catherine]

Hello Kat,

I'm so sorry to hear of your dads diagnosis. It is so scary and overwhelming. My best possible advice to you would be to get to your local specialist centre as soon as possible.

I'll tell you my mums story to try and give you some hope. We went from no hope to hope within 24 hours of my mum getting to ours. On November 1st we were prepared for her imminent death by the palliative care nurse at our local hospital as the doctors there did not expect her to survive the bile draining procedure. She was transferred by ambulance to our local cancer centre that night. At the time she was too poorly to have surgery (jaundice knocked her off her feet and she ended up in multiple organ failure - after that she felt she couldn't face it) Finally after 6 weeks she was discharged from hospital with a follow up oncology appointment. Locally all our oncologists work to the specialist centre so treatment options are up to date. My mums tumour also was 2cm x 0.18com and involves the portal vein. She has sailed through chemotherapy, apart from a 3 day stay in the ward for an infection and I would say she has had 99% good days since she came home from her original hospital stay. 6 months from being told to take it hour by hour we are now celebrating the news I posted earlier. Never ever give up hope.

Why did your dads oncologist say radiotherapy isn't an option? This is becoming an increasingly popular option for patients who have been able to have surgery. My mums oncologist told us today that she probably wouldn't need it after her chemo radio. Also there are other chemotherapy options being more commonly used. Gemicitabine and cisplatin combined is being offered in some areas and is having good results. It is also quite well tolerated, so perhaps ask about that.

The other things I would say to you are get creon as soon as you can, try your hardest to make sure your dad maintains his weight (I've put on a little weight trying to get my mum to eat things, going out to lunch and baking lots of cakes) and make use of anyone who is offered to you in the way of health professionals. The Macmillan nurse and district nurses have all been fantastic with us. But most of all be positive and don't give up hope. I never have, I am always telling my mum about people's good news stories and I think that has helped her to stay positive.

Good luck

Lots of love

Catherine xxx

[KATB]

Thanks so much for your replies - it's quite amazing the good that support from others can do. I might be here quite a lot!

Regarding radiotherapy, the oncologist said radiotherapy just isn't generally used because of the damage it can cause to surrounding organs. I'm interested in the stereotactic radiotherapy but not sure how to go about finding out about this.

Regarding chemo, I've also heard Abraxane can lead to good results. The oncologist didn't mention this.

To be honest, the onc was very 'down' in his delivery of news and options. He was probably honest and realistic but his whole demeanor was very negative and I'd rather be hopeful until there genuinely is none, if you see what I mean.

I think FOLFIRINOX is one of the newer regimens - it's been used in the States with good results but it's quite toxic, hence us pushing to get dad fitter. He has no other comorbidities so he just needs to build back up from the effects of the jaundice, as Deb says.

He managed a decent hilly walk today according to mum and he has eaten well and been in good spirits.

The Macmillan nurse also visited them - I wish I'd been there - mum says she was excellent and was there for quite a while.

I'm just absolutely itching to get a treatment plan in place, but I do understand the need to make sure liver function and blood counts are good and that he is fit.

If there is no other option he will go for FOLFIRINOX I think but I really would like to seek a 2nd opinion as he is not currently under a specialist centre. I think his nearest one would be North Manchester. Does anyone know how you go about getting a 2nd opinion?

Kate

x

[KATB]

Oh, regarding Creon, we asked about that - apparently dad isn't displaying any symptoms to suggest he needs this at the moment so it hasn't been prescribed x

[KATB]

Sorry for the extra posts - also, the oncologist didn't seem to think a dietician was necessary. We asked about that too and he was quite dismissive - just shrugged and said 'well there is one available if you want one'. Hmmm.....

Should we be pushing for dietician and Creon?

I was not overly impressed with the oncologist to be honest.

[suef]

Dear Kate,

I guess you have seen the list of specialist centres on the website

http://www.pancreaticcancer.org.uk/information-and-support/your-local-specialist-centre

It might be good to ask the support staff for advice when they are back in the office as they have a lot of experience of which specialist centres are the most supportive!

I think Creon is only prescribed if you have 'floating stools', very fatty motions that will not flush away. Generally I try to avoid fatty food, have lots of steamed fish and vegetables. Sounds boring but can be very soothing!

It sounds as if you are doing really well! Keep fighting for your dad!

SueF

[KATB]

Hi Sue,

I'm aware of the specialist centres nearest to us and have a contact at North Manchester so I think we could get a quick appointment with a surgeon there. I'd like dad to go for a 2nd opinion - they may say the same but there is no harm in asking.

The oncologist said the same re Creon and so far it looks like Dad doesn't need it.

I'm really trying - as I say, just taking each day as it comes and, as far as possible, not allowing my mind to wander into the future.

I have had a phone conversation with Jeni already - she was fab. I'm sure I'll be calling again!

Thank you so much for responding, it means the world.

Kate

x

[Catherine]

Hello Kat,

I am not sure how you go about getting to a specialist centre - I am sure the support team will be able to help you with that though. Your dad has a right to a second opinion and a right to being treated at a centre that specialises in his disease. At our local hospital we were being offered nothing for my mum. We are eternally grateful she had to be transferred as an emergency to our centre. Keep pushing and be firm. I would push for a dietician and creon if I were you, push for everything you can get for your dad. My philosophy is use whoever you can, we think of things like a stunt safety net you don't use it all the time but its there if you do need it.

The explanation as to why radiotherapy shouldn't be given was told to us today in reverse, mums oncologist said the risks were less than 1% and he had never encountered anyone with the most serious side effects. I think his thinking is the benefits by far out weigh the risks. Good luck with getting a second opinion, you have to be confident that your doctors will do everything they can for your dad.

Lots of love, Catherine xx

[KATB]

Thank you Catherine,

I don't feel that confident. I get the feeling the oncologist thinks it's hopeless and that he is offering treatment because there is nothing else to do. However, we want to fight, especially after reading so many positive stories on this forum and given the fact that my Dad is otherwise fit and healthy.

I think I will push for a 2nd opinion and see what else a specialist centre might offer. It's a shame Jeni is not available tomorrow but on Tuesday I'll get on to it as Dad's next appt with the oncologist at the local hospital is not until 10th April.

Kate

x

[Catherine]

All the very best of luck. Your dad is lucky to have someone fighting his corner.

Remember to take care of you too.

Lots of love

Catherine xx

[J_T]

Hi, I am Kate's mum

I asked the Macmillan nurse today about a second opinion and she said it was our right and that onc's don't get upset by it, they all tend to kind of know one another.

I did ask if went that route would it impinge on the chemotherapy treatment we will be offered in our own region. She said it might because they wouldn't want to start on a course of chemotherapy that was going to be interrupted if we started down another route.

To be honest, it all confuses me and I thank goodness for my children, especially Kate who has knowledge of the drugs and pathways. She is like her dad, knowledgeable, organised and pro-active. She's been amazing x

[KATB]

Awww, mum xxx

That's why I think we try to get a 2nd opinion quickly. No treatment will be started while dad is still recovering from the jaundice so now is the time to move fast and get that opinion so we can weigh up all the realistic options. I really would push for a consultation at North Manchester.

Kate

x

[DRAD3]

Hi Kate (and Kate's mum)

After reading through the latest posts I am thinking you are right to seek a second opinion, if only to get the opportunity to speak to someone who is not writing your Dad off!! It is totally unacceptable to have to speak to an oncologist who is so dismissive - I would tell this person that, whilst you are happy for them to be entirely frank about how serious the situation is, this does not mean you do not expect them to offer you everything that can be offered with the hope that that will bring - tell them that you expect them to do their very best to keep your Dad with you for as long as possible. Be assertive - I know this can be hard when you feel they have your fate in their hands but it is your right to get the best possible treatment available and as in all areas of life, if you are a pushover, certain people will take the opportunity to walk all over you or take the easy route.

As for creon - my husband never had to use this, so it is an individual thing but if you talk to Jeni or Dianne again next week, I am sure they will help you decide whether you need to be pushing for it.

Take care both of you.

love

Deb

x

[KATB]

Thanks Deb.

My mind is switching from one view to the next. On the one hand I want to get a 2nd opinion but on the other the FOLFIRINOX regimen suggested by the oncologists seems to be the most up to date and showing promising results. I'm not sure another centre would offer anything different. Plus, I don't want to delay any treatment by trying to get appointments elsewhere.

What to do?!

I had my brothers over yesterday and one is trying to rope in the other, plus my husband, to do a sky dive to raise money for Pancreatic Cancer UK. Of course, I was egging them on

I like my feet firmly on terra firma so I'm looking for runs to do but struggling to find one that my 12 year old can do with me (I would do a 10K and they don't allow 12 year olds to do them even though he's a club runner and would do it no problem).

There are 6 million things running through my mind and it's a battle every day to try and focus on the here and now. I'm sat here trying to work but keep reading papers and articles about potential treatments, ongoing studies, the possibility of targeted treatments and looking at other pathways....none of this will come round soon enough for my dad but my interest in this hideous disease will now be permanent.

My mind starts to wander and I start to panic about what my dad might go through in the coming months - I'm constantly talking to myself - 'today is fine, don't think about the future'. Living in the now is the only way to cope with it but it's so difficult.

Anyway, it's work this morning and then an afternoon with friends. Tomorrow I'm up to mum and dad's again to spend a couple of days with them before I have to come back and look after the boys who are on school holidays.

Thanks for listening to my ramblings - it's good to get it all out there. With the boys around all the time I don't get much time to talk Steve (my husband) about it so I'm carrying a lot of this around in my own head with nobody to talk to.

Kate

x

[DRAD3]

Exactly what this space is for, Kate, to get those thoughts out - they do go round and round don't they?! Nothing you will be thinking or feeling will look odd here, I assure you! Great that you are thinking about money-raising (raising awareness important to) - I so want to do something useful, after feeling very useless and powerless - I guess you feel the same?

I am sure you will find talking to the support team next week helpful - perhaps they will be able to help you decide what to do with regards to the second opinion - as you say...what to do? - it's difficult, but you are obviously giving everything a lot of thought and I am sure you will make the right decision.

Try and enjoy the Easter weekend - so nice that the sun is shining for us all and a balmy 6 degrees - I was quite warm today!!!

Take care

Deb

x

[KATB]

I've been at mum and dad's since yesterday and it has been lovely.

Dad was fine yesterday and we all went out for a lovely walk in the sunshine. He has done a walk every day for the past few days.

Dad had been really comfortable the previous night and slept right through but had discomfort last night that kept him awake. Management of the discomfort seems hit and miss and it's mostly indigestion pain as far as I can work out.

Today he's more comfortable, although if Man Utd had won that might have helped even more - they were hopeless

I went over the treatment options with dad again yesterday as he said he still wasn't clear on what they were. I think he's quite up for the FOLFIRINOX and knows he needs to keep fit and active and eat well. He is definitely better than he was a week ago - his voice is stronger, he's walking better (i.e. he's upright, not slouched) and he's not losing any weight. His weight is fine now, it just needs to be maintained.

He also said he wasn't that impressed with the oncologist but the GP and the Macmillan nurse have the thumbs up. I'm so glad about the Macmillan nurse as I'm sure she will be a real life-line when chemo starts.

I'm just so hoping his bilirubin is down by the time of the next onc appt next week so we can start planning treatment.

So as things stand right now, we are all quite positive. Taking each day as it comes is definitely the best way to deal with this.

Hope everyone has had a lovely Easter weekend!

Kate

x

[DRAD3]

Hi Kate

So glad you have had a nice Easter weekend and your Dad has managed to enjoy some walks. Great to hear that he is feeling better - I am sure that will continue as the jaundice improves. Indigestion certainly a regular problem for PC sufferers and I know my husband's diet post diagnosis beared absolutely no resemblance to pre-diagnosis. Might be worth keeping a food diary and noting problematic foods (there is a diet advice info page on the site too, if you haven't found it already?) Night-time discomfort not uncommon either, I understand, but hopefully as your Dad comes to understand how PC effects him, he can juggle his lifestyle a bit so it does not take the upper hand. All things the support team will also give advice on. Sending love.

Deb

x

[karen17]

Hi Kate,

Regarding Folfirinox I have to say my husband is tolerating it really well with a reduction in tumour size showing on a recent scan. He is having it at 80% strength with the only side effect being loss of taste. You will see from my previous posts that he is still working and that things are much the same for us at present. I have also heard that Abraxane is good but it seems to be offered more in the States although the combinations are available singularly here. I think it is having pretty much the same good results as folfirinox. If you are looking at radiotherapy too have you looked into RFA or SIRT. There's also Nanoknife which I believe is only available at the ...(edited-moderator) in London which is a private treatment and Cyberknife which I think is available on the NHS in some hospitals.

Take care Kate

Karen

[J_T]

Hi Karen, Good news about the Folfirinox! Hope the positives keep on coming.

I hope we get the chance to go for it and it works as well!

Good luck

J_T (Julia)

[KATB]

Hi Deb and Karen,

Deb, I've not found the diet page but I will go and have a look as so far we can't think of anything he's eaten that might make the indigestion worse.

Karen I read your story on another thread and I was so encouraged by it that I told dad! My dad is 61 but was previously fit and active - going on mountain walks, playing golf. Not even 12 months ago he was in Florida with us riding the biggest rollercoasters and throwing himself down the tallest waterslides with my kids! He doesn't have any other illnesses or conditions so I think he should be fit enough for FOLFIRINOX. Everything I'm reading about it seems positive so I have everything crossed that we can get him on this ASAP. I'm feeling frustrated by the delay but I know we have to get the jaundice right down. His bilirubin is coming down well but I think takes a while to get to normal completely and this is the stumbling block at the moment. Meanwhile I am being Mrs Pushy - telling him what to eat, encouraging him to have the Nutrisip drinks in between meals for extra calories and encouraging him to get out and walk and not be sat down all the time. I think he could get sick of me so good for him that I'm not there all the time

Do stay in touch Karen as it would be great to hear how your husband gets on and perhaps I can come to you with questions when dad finally gets onto the regimen?

I'm back home from mum and dad's now and trying to get work done this week (I work freelance). I'm back with mum and dad next week for the oncologist appointment. The onc has a very negative sort of demeanor and I plan to be more upbeat in the consultation - regardless of what he tells us I'll be saying I've heard positives about FOLFIRINOX so get us on it please!

Kate

x