Thoughts from the PC frontline

[WifeampMum]

Hi DG, I will have a think and do a bit of hunting around for this article when I get home (am currently sat in hairdresser chair, plastered with hair dye, not my best look) but it doesn't ring any bells I'm afraid. Will also post the bitter melon details. xx

[WifeampMum]

DG, sorry but I've not been able to find any articles like the one you describe.

Bitter melon capsules - just bog standard ones from a well-known high street health food chain. They say "Full spectrum" on the bottle and he takes the recommended dietary supplement dose (2x 1 capsule of 500 mgs daily).

[WifeampMum]

PCUK Nurse Jeni wrote:

> I am very impressed with such a clear plan as well, and think the alternate

> care between surgeons and oncologists is brilliant. And really impressed

> with the 3 monthly diabetes bloods - ca 19.9 would usually be done, but not

> glucose, so that a very positive step forward.

Thanks Jeni, we are very happy with this plan too!

The 3 monthly glucose check was our suggestion. The registrar oncologist that we saw on Friday was happy to support it though she said it wasn't normally part of the follow-up plan. This seems distinctly odd considering so many whippled people go on to develop diabetes!

We also asked for the 3 monthly CA19-9 check. Our Consultant had previously recommended 6 monthly checks but fortunately Friday's registrar supported our request. Judging by his CA19-9 readings since diagnosis, hubby's readings do seem to be a good indicator of cancer activity, and we feel that 6 monthly checks would leave too much to chance.

The alternating between oncologist and surgeon is not normally offered, but incredibly fortunately, hubby's surgeon is taking a keen interest in hubby's case - possibly because he's responded so well to treatment. We get on really well with him and trust him implicitly, so when he said he'd like to keep hubby as a patient we jumped at the chance. Our oncologist suggested alternating visits.

One thing we still need to establish is the frequency of any future CT scanning. Our oncologist suggested 6 monthly scans but one school of thought says that scans are best avoided if possible (due to the radiation). We are going to take our surgeon's advice on this.

[Dandygal76]

W

Edited October 9, 2016 by Dandygal76

[Guest]

Delighted to read this W&M,

Given the nature of this disease the more specialities you can get consulting and working with each other the better! Well done xxx

[Dandygal76]

Hey W&M, I did not write anything quirky above if you did not see it - I think I was a little self involved over the weekend and decided to delete a lot of what I wrote. I didn't want to rain on your parade and was paranoid I said something wrong I am so happy for you that hubby is coming up all clear and that you have a care plan you are happy with. I can also understand issues around CT scans - it is a worry having them constantly and so I was wondering what their reason is for not offering up MRI, or at lease alternating them. I do believe this is in the consultants discretion. Saying that, dad is only getting CT scans and I have not really thought about it before now.

It is nice to hear some good news on here and thank you for looking up to see if you can find the stats. I am so sure I read something - perhaps it was not where I thought it was. It would be lovely to see stats now with the full results of the Fox and Abraxane as well. Everything I quote is out of date.

xxx

[WifeampMum]

Hey DG, good question about MRI scans! I did catch your deleted message and it prompted me to have a very quick look for any recent articles comparing MRI to CT Scans. I found one that suggests they're equally effective at imaging PC. As you know, MRI scans are more expensive. Also they take longer, but they don't involve radiation. We've never been offered one on the NHS.

When we see the surgeon in three months we'll ask about MRI scans and I'll post what he says.

Re the article that you read but can't find, I did look on the MD Anderson website but couldn't see it.

I'm sorry you had a tough weekend, DG. I agree with what others have said about looking after yourself, it is SO important, but can be very hard to do on PC Planet (nice one, Mo!). If you are well, it will help your boys and your Dad. So if you possibly can, be kind to yourself and don't beat yourself up about stuff.

xx

[Guest]

Hi W&M,

How are things with you? I don't want to pry or suggest that you need to give me updates especially as things are going well for you and hubby but I was thinking of you and thought I would drop by. Is this something you or DG had heard about? I'm not sure how relevant it is to PC but I have put a few quid in the pot because I understand it's being used for lots of cancers, something good for everyone I hope.

http://www.uhs.nhs.uk/AboutTheTrust/Newsandpublications/Latestnews/2016/Southampton-clinicians-pioneer-use-of-revolutionary-cancer-device.aspx

Wishing you a lovely evening M xxx

[WifeampMum]

Hi Marmalade

Thanks for dropping by. I'm good thanks.

I read your thread this evening and want to echo what others said there...that Louis showed immense courage in his end-of-life choices - and that he was so blessed to have you there supporting him, comforting him and holding his hand every step of the way.

I'll miss you greatly if you stop posting but totally understand if it's not helping you. It's time to put yourself first.

And thanks for the link, I'd not spotted it and it looks really interesting.

Love and hugs

W&M xx

[WifeampMum]

I've not posted on my thread for a while. Hubby is still tickety-boo for which we are immensely grateful.

This past week there have been several scientific breakthroughs in the understanding of PC which have brought me some cheer. I'll post links if anyone wants me to. They're a long way off being translated into actual treatments but at least good progress is being made on the research front.

My main reason for posting now is that I've just come across a wonderful article that I'm sure will resonate with Marmalade but maybe other forum readers too. There is often a choice to be made when a loved one is first diagnosed as to whether to pursue aggressive and possibly scientifically unproven treatments or to follow a more gentle path. This decision can be almost unbearably hard...there is so much at stake.

The following article, first published in the Journal of the American Medical Association in 2008, makes some very powerful arguments in support of the more gentle path. It's about waging peace in the war on cancer.

"Acceptance:  when to say stop (Waging Peace in the War on Cancer)"

http://comfortcarechoices.com/index.php?option=com_content&view=article&id=80:treatment-options-a-dilemmas-&catid=36:articles&Itemid=75

I hope some here will derive comfort from it.

W&M xx

[sandraW]

Thanks for posting that W&M, its certainly another way of looking at it, perhaps how I myself might look at things if I am ever faced with that decision personally.

I am glad to hear that Hubby is tickity-boo and long may he remain so, love sandrax xx

[Dandygal76]

That was a nice article W&M

I think any decision that is taken on the path of dealing with PC is equally courageous, equally honorable and equally deserving of dignity, respect, and support - just like the article states. Every person I have met on this journey, whether in person or not, have just amazed me in the way they have faced this terrible disease in the capacity of any decision they have made on how to proceed. I am constantly humbled. x

[Guest]

Hi W&M,

So very pleased to hear that hubby is doing well, it cheers me enormously and I and delighted.

Thank you for posting the link, there are a few others I have seen, there was one in the telegraph not so long ago but for obvious reasons there is a reluctance to have a detailed debate on it in the newspapers. The Liverpool Pathway was so badly mis-managed and mis-communicated that any discussion on end of life care is completely overshadowed by it. We see a disproportionate number of young and middle aged people with PC on this forum (much older people are less computer literate) which also makes meaningful debate more difficult. The fact is that the majority of people diagnosed with PC are over 80 years old and most of them have other complex health issues.

I know from speaking to doctors that they do have a different attitude and approach to younger fitter people in all types of critical and emergency care. They are used to balancing sparse resources and understandably they want to give most resources to those with the best chance of survival. This is no different to kidney, liver and heart transplants, dialysis and other life preserving treatments. The fact that we have not had acceptable, uniform end of life care guidelines and protocols has meant that some of our elderly patients have been subjected to invasive and or debilitating treatments which has made their end of life far more painful, uncomfortable and undignified than it need have been. This has been done on the advice of or with the agreement of doctors who don't want relatives hassling them or suing them or who are just bad at making clear the likely outcomes of the diseases they are treating and the treatments available. I believe there is as much damage done by these attitudes as by those who mis diagnose, delay or neglect PC patients.

The big thing about the diagnosis is not "am I going to die?" shocking as it is, the answer is yes, life is limited, terminal, whatever language best fits the patient. Elderly people with complex health issues are well aware of their own mortality and have probably had one or more flirtations with death. The questions for them are are, "am I going to suffer, who will look after me, how will my family manage, do I have any choice in where and how I go?" Again, speaking to quite a few doctors in oncology, geriatric medicine, GP's, district nurses and our local hospice I find that patients will often use fighting talk when relatives are around but have different views when they are speaking to the doctor or nurse alone. Some feel a stigma attached to saying no to treatments that purely extend life or to stopping them when they become unbearable, especially when the patients relatives are clearly distressed at the thought of losing them. It's a kind of emotional blackmail and most don't even know they are doing it "Don't leave us" is often heard, "keep on fighting" "never ever give up" and so on. Don't get me wrong, I think end of life care MUST include the option of trying everything and anything whatever age we are but I also think that elderly patients with complex health issues should be given a clear understanding of what end of life care would be like without treatment and that understanding should be delivered without fail on a national basis. Our hospital doctors refused to be pinned down on what death from PC might be like (scenarios) what symptoms could arise and what options were available to palliate these issues with or without hospital care. Immediately Louis decided against hospital care and chemo our GP put us in touch with our local hospice who ran courses dealing with exactly these issues. It is a failing of the care system that you cannot be told about one important option unless you opt for it and only then if you have experienced and open hospice staff or GP's. There are many complaints on here about not being given the best info on treatments chemo drugs and surgery but I have never seen one that said "I was not told that I could be freed from hospital appointments, have a better quality of life and be given top quality pain relief and nursing in my own home or at a specialist hospice or nursing home when I needed it".

The case for those who are under 80, and for all who are otherwise in good health is quite rightly very different and requires different handling, resourcing and drive but should still include being given ALL the available options.

Above all, we need to get much earlier diagnosis of this disease. This would be the single most important step forward. The prognosis for this cancer is only so dire because it is not diagnosed early enough thus limiting many treatment options. Research aimed at achieving this gets my vote and if the public purse can only stretch so far it is here I would like to see the money spent. As a second line approach I would like to see suspected PC confirmed or eliminated in a maximum of two weeks. It is ridiculous that patients are passed around the MDT like parcels with appointments with every dog and its mother. You should go to a diagnostics clinic have a shoulder to hip scan, PET scan, radiology and specialist review and, if necessary, the EUS biopsy then and there. The most common type of PC can even be seen and identified on a slide in the EUS theatre!

I realise I have probably said far too much but hey ho, what is to be lost. Thank you again W&M I will be taking my thoughts with me to a meeting at my local district hospital on the 15th of December where I am meeting the head of clinical medicine, senior radiologists and the consultant gastroenterologist and oncologist who saw my husband in the hope that we can come up with some improvements to communication and diagnostic protocols at that hospital.

Much love to you and to hubby for continuing good health,

Marmalade xx

[Dandygal76]

Marmalade, what you have said is brilliant and needs to be said and was said very well. It is such an important aspect to this disease. I understand what you say about the emotional blackmail... of course we do not want to lose our love ones but I have learned a lot from you and when my dads time comes or when he decides he has had enough it will be will dignity and grace, mainly because I have seen how it is done through you. And we know loads of people read and do not post on here and so I am sure you have helped so many people to reach the right conclusions.

I like to think we are a bit yin and yang on this forum. What the NHS does not provide in terms of both options we are helping to fill the gaps.

I read somewhere (I always say that but I read so many things around this) a story of someone dying with PC and every time he drew his last breath the family cried out and he came back. The hospice nurses had to pull the family aside and tell them to let him go and not shout out. The pull of the family emotions was too hard on him. We don't want that, we want peace for our loved ones and we need to tell them we will be okay and that they live on through us.

Saying all that though it is such a difficult balance. When my dad felt very very poorly at the start of chemo he did say to me if he was in his 70's he would have thrown the towel in and if it wasn't for my son I think he would have then to be honest. And I would not have blamed him at all because it was really really crap. It is such a complex decision and I think probably easier for us because my dad was otherwise very fit and healthy before diagnoses. Every case is so individual. But I look at my dad now (who again trashed my house fitting gas to my kitchen yesterday) and I cannot believe we got from rock bottom to where we are now. I will always keep saying it on this forum... knowledge is power. And that increased knowledge and experience also involves knowing and learning when the time is right to say no more. x

[Dandygal76]

I am going to post on my dads thread when I get a chance. On the other side of this we have got some real positive and some real blockages that cannot go unsaid. x

[Ruthus]

I agree with all that has been said. When people are given a cancer diagnosis those words, fight, never give up etc are used. I totally understand that sufferers and family don't want to lose their lives or lose their loved ones. However I'm of the view that each case is individual and an individual and families decision regarding treatment is a personal one. My 91 year old father was diagnosed with a NET 6 years ago. He was offered treatment but refused. He didn't want to be messed with. He didn't want to have to go to hospital and the many appointments. His case was discharged and his care is with his local G.P. Knowing what I know now I think he absolutely made the right decision. The tunour is slow growing. He doesn't seem to have deteriorated and has good quality of life. He go's out everyday on the farm my nephew owns. He builds walls, runs his dogs and enjoys his life. I know he would have hated all the appointments at hospital.

For myself the situation was different. I am only 43 and have two children and husband. I feel too young to die. However after having 9 sessions ofFolfirinox and major surgery I have experienced first hand how tough these treatments are. I had these treatments as was pursuing a result of disease control which was the right decision and without this I wouldn't be here now. I am now on Gemcap and had liver ablations. I am tolerating these treatments well and my quality of life is good. Whilst this is the case I'm happy to continue with the scans and treatments. However if it gets to the point where I'm told chemo isn't working. I don't think I'd want to continue with chemo. Also if I was told I was at a point where I could have a chemo which may make me feel very unwell and only give me an extra two months of life I think I'd opt for no treatment. I would rather spend that remaining time feeling better and having quality time with family. The article talks about this regarding acceptance and how instead of spending all day at hospital waiting for bloods and scan results instead I could be walking up a favorite hill soaking in the views and air. Of course if I was told aggressive chemo would give me 70% plus chance of good outcome I'd be willing to go through with it but if it was that the outcome may add an extra few months I think weighing up quality of life would lead me to no treatment and this would be a sensible decision in my view.

I totally agree that diagnosis of this illness should be treated as a clinical emergency and fast tracked with all tests done immediately and treatment plan started within two weeks. It is different from other cancers and time is of the essence.

I see people who choose to either have or not have treatment with this disease as brave. Treatment can make some people feel so ill and I hate to think people feel pressured to have treatment for the sake of family. It really is weighing up cost benefit analysis and from personal experience I know just how much time appointments and treatments take up. It can be all consuming and many times I feel I just want to be left alone. Each persons decision regarding treatment should be respected.

[WifeampMum]

Thanks Sandra, Marmalade, DG and Ruth for taking the time and trouble to reply, and for your wise words.

xx

[WifeampMum]

Some positive news coming from the US today:

"Pancreatic Cancer Survival Increases for Third Consecutive Year"

http://www.businesswire.com/news/home/20170106005160/en/Pancreatic-Cancer-Survival-Increases-Consecutive-Year

5 year survival has risen from 8% to 9% and this is based on data that is at least 3 years old.

These figures are based on US patients. I'd be very interested to know what the equivalent figure is for UK patients.

onwards and upwards!

W&M xx

[Dandygal76]

I was about to post that on your thread but you beat me to it! I think it is def improving since then. Not sure so much in this country with NICE in control of what everyone can have as 2nd line treatments though! x

[Dandygal76]

W&M... I was thinking about this and for those stage IV I would also like to bring them again to this report that is now very out of date.

http://www.targetedonc.com/publications/evolving-paradigms/2016/pancreatic-cancer/evolving-paradigms-in-pancreatic-cancer

I know it is stated as 'just 2.6%' but that is huge when you are told you have no hope. And, the data is dated.

Where there is life there is hope. x

[WifeampMum]

Hi all

I'm continuing here a discussion between myself and PW that was started on another thread yesterday.

PW wrote:

<>

PW, I agree that a large increase in CA19-9 should set alarm bells ringing but I understand (from fairly extensive reading on PC) that a CA-19-9 rise can be 2-6 months ahead of a CT or PET scan in indicating progression/recurrence. So what does one do if the oncologists will only treat on the basis of the scan?

[Veema]

I thought the CA19-9 only indicated possible tumour activity, so it would depend on how aggressive the tumour was...it could be very slow growing, but still show a rise in the CA19-9, so could still be classed as fairly stable...the amount of CA19-9 doesn't necessarily correlate with how aggressively the disease is spreading...that's my understanding anyway.

Vx

[patrigib]

My husband 's ca was 38 in December but MRI showed progression of liver mets and chemo not working anymore. He is on Gemcitabine now, which he doesn't tolerate well.

So ca markers are not always reliable

[Elaine123]

Thanks everyone for posting that info as Pete sees oncologist on the 8th to discuss what happens with treatment now given that he took neutropenic sepsis and became really ill. Dreading it but your posts and opinions have helped me to understand it more.

Elaine

X

[Proud Wife]

Hi W&M

I'm a bit slow tonight! If I've understood you correctly, are you saying CT scan would not necessarily show any progression but with constantly rising CA19-9 markers at the same time as the scan, that progression (assuming it was progression) would then take 2-6 months more to actually show in on a scan?

Veema, it's not the numbers that matter, its the trend. Someone can have a CA19-9 in the thousands, other in the low hundreds. Anyone can feel free to correct me - I don't think the actual number that determines how aggressive the tumour is because everyone is different but if anyone sees a steady but constant increase, then the chances are that's not good news. Specialist Nurse Rachel has also commented on markers.

Going back to your question W&M, my hubby had steadily increasing CA19-9 markers yet his oncologist said oh they are not that high, you can have a chemo break. and then another. I pointed out they were increasing steadily but was poo poo-ed. I think he was only around 200 when he passed and 107 on diagnosis so numbers don't matter, it's purely trend.

Now if we know that as lay people, why on earth can't the oncologists grasp that simple fact. I firmly believe that anyone with increasing markers must receive treatment subject of course to whether they want that treatment and/or are fit enough for that treatment.

Again it boils down to the the nature of the disease itself and I just think its the dead man walking attitude.

Lots of love xx