Post Chemo Scan

[Nardobd]

We went to see Ted's consultant today to get the results of the post chemo scan and were delighted that everything looks stable. The area on the scan hasn't changed much since the last scan in May and his tumour markers are down to 5.3, right at the lowest end of the scale. His consultant says that Ted has "exceeded expectations" and he doesn't need to see Ted for another three months, which is a welcome respite after the frequent visits to the hospital over the last six months. Ted's fought so hard and seems to have won the battle, at least temporarily. I'm so very proud of him. I'm not blind to the fact that this isn't a "cure" but I'll take any positives we're offered!

Nicki

[Ellie]

Nicki - I am so very pleased to hear the good news! That must be such a relief, knowing things are stable - must make all the awful treatment seem worthwhile.

As you say, it's not a cure, but it is most certainly excellent news. Let's hope things continue this way for you both, for a very long time.

Love

Ellie

xx

[Guest]

Hi Nicki,

Thats fantastic news!!

I hope that you can both enjoy a "normal" life for now and have some quality time together!

Keep us upto date!

Love Lisa x

[Trevor]

Hi Nicki

Thanks for your response to my post about Chris. I 'm happy that things for your Ted seem to be going in a similar way to Chris. It's a strange journey , this we're taking, because we know the outcome but also want to believe in miracles.

I'm coming to the conclusion that the miracle is longer survival with a decent quality of life. I'm not sure if there is anything else.

I've just replied to Ellie, and said that my big issue is how to deal with the "end times". I'm not sure how I'll be able to cope.

Thanks for letting me into your world, I hope as time goes by we can help each other

Trevor

[Nardobd]

Thank you all for your support. It's so important to ensure that we record the good things along the way too, so that it's not all doom and gloom. This awful disease creates enough of that on it's own and positivity is cruical to my sanity, even if not to anyone else's.

Nicki xx

[kezza1]

Only replying to convey my little story and my hope for everyone. Found out I had pc july last year, mid july had an unsuccessful whipple,vein involvement. Four months of chemo,gemzar and cisplatin ,with the last month having radio concurrently. With tumour shrinkage another whipple was performed january this year,had a pulmonary embolism 11 days after the whipple in hospital another 14 days then home. Recovered from whipple and embolism had another 2 months chemo my latest bloods show cancer marker so low can not be measured.,less than 1.Taking this as great news but with this cancer being the nasty thing it is who knows what my future holds but right now feeling hopeful, strong and almost normal.

[Ellie]

Hi Kezza

Thanks very much for telling us your story. It's so encouraging to hear that your treatment has reduced your tumour markers and you are feeling so well and positive.

We tend to hear the worst of things on here, so it's really a boost to know that some people overcome the odds and make such good progress with their treatment.

I hope you continue to improve and I'm sure everyone would like you to update your progress now and again to spur them on, too.

Best wishes

Ellie

[Nardobd]

Hi Kezza

As Ellie says, it's really encouraging to hear from people who are successfully fighting this disease. None of us know what's going to happen in the future but I do hope that you continue to be well.

Kind regards

Nicki

[Juliana]

Hello all,

I don't want to bring a downer to the thread, just thought I would give you a heads up on the CA19-9 marker.

Mine has been low since I had a whipple/chemo/radio last year, reading under 10 (Feb through to Sept). I was always advised it's not reliable, and could give false positives etc, but I also enquired if it could give false negatives - and hit a kind of grey area. Unfortunately I think with the markers always being low, my oncologist didn't really think a persistant back pain I had for several months was anything to be worried about. However, this has turned out to be disease regrowth :S (A tumor around the Superior Mesenteric Arter, and multiple sub centimetre tumors in both lungs)

I'm currently back on the Gemcitabine and have also had a 2nd opinion (wish I hadn't!) - 2nd time round has been harder in a way as they haven't given me any hope, the words pailliative are used instead of curative (even though the chance was slim I know - but atleast I had hope!) and I feel like a walking time bomb. If only Jim'll Fix It was still on......I'm sure he'd have a go

Anyway....off to bed - have the school run tomorrow and 3 little ones to get ready, fed and washed!

Kind regards,

Juliana

(age 37 - adenocarcinoma of the pancreas head)

[Nardobd]

Hi Juliana and it's good to hear from you, although I'm sorry to hear about your situation. I agree that the CA19-9 isn't the be-all and end-all. It's merely one of the measurements and tools which MAY give an indication of the current situation. It's easy to be lulled into a false sense of security because of the numbers but other indicators should never be ignored.

In Ted's case the tumour (also adenocarcinoma of the pancreas head) was already too advanced for surgery and he has been receiving chemo as a pallative measure from the outset. His CA19-9 markers have been an inspiration to him to keep going with the chemo and fighting the disease because they have dropped from over 800 on diagnosis to a mere 5 after chemo. So, although it's no guarantee that the tumour is stablised, I'm glad to see that the number has dropped so significantly because it keeps him fighting.

As ever, don't forget we're here if you need to vent.

Kind regards

Nicki

[Juliana]

Hi Nicki,

You mention that your hubbys tumor is too advanced for surgery.....in what way?

I only ask as mine was in the head of the pancreas too, and the size of a grapefruit - to this day I am convinced that if they'd known it was cancerous before they operated, they wouldn't have removed it. Mine had spread to several of the lymph nodes in that area, they didn't show signs on the scans of change is shape etc - they were removed as a precaution when the tumor returned positive for malignancy. It had not spread anywhere else, from what they could see.

I'm glad the CA19-9 has dropped for Ted - let's face it, we need all the encouragement we can get!

Juliana

[Nardobd]

Hi Julianna

It wasn't the size of Ted's tumour which prohibited an operation but the site - the tumour was entangled with his superior mesenteric artery and vein. There's a good picture of the pancreas and surrounding anatomy on the following website if anyone would like to take a look: http://wpcontent.answers.com/wikipedia/commons/7/73/TIEU_0442.gif

When I asked on diagnosis, I was told that if the surgical team think they can operate they don't do a biopsy if they suspect pancreatic cancer. The reason for this is that it poses a greater risk. They remove the tumour and then send it for analysis.

There is a high risk of recurrence when a pancreatic tumour is removed. In his book "Advanced therapy in surgical oncology" Raphael E. Pollock says "It is common for disease to recur following pancreaticoduodenectomy [Whipples procedure]. The most common sites of recurrence are the liver and lungs...". I don't want to scare anyone and should point out that even though this is described as "common" it is still a minority of patients, ie less than half and that I don't know when this book was written so it may be out of date.

There are important clinical trials underway relating to pancreatic cancer and I consistently say to Ted that all he has to do is keep going because there will be a breakthrough one day! It is this hope, together with positive indicators such as tumour markers, which keeps us going on the bad days and gives us inspiration on the good days.

Kind regards

Nicki

[Juliana]

Hi Nicki,

I have heard of Pancreatic Cancer patients having CyberKnife treatment if the tumor is deemed inoperable due to it's location around/near an artery. If my secondary disease hadn't been in both lungs, that's what I may be going for myself, but due to the spread CyberKnife wouldn't be beneficial.

http://www.cyberknifeinfo.co.uk/ourstory/

http://news.bbc.co.uk/1/hi/world/europe/jersey/8147611.stm

Unfortunately it is expensive - however, I have read an article where the NHS has funded it as the estimated 'palliative' care would have been £200,000 whereas the CK sessions cost £20,000. You would have to approach the Primary Health Care department with your case/argument for it and see if they would fund it.

My 'biopsy' consisted of an ERCP down the throat and a needle inserted into the tumor to draw out cells. I had this done in 2005 when they first found it, and was told it was a 'serous' cyst and it would never turn into cancer. After I had to have the operation and the cyst turned out to be cancer, I was told that the needle biopsy wasn't reliable as it could so easily miss the malignant cells....it still irks me that they backed that one needle biopsy 100% for 3yrs.

Take care - off to a kids birthday party now.....whoopee....!

Juliana

[Nardobd]

Hi Julianna

Yes, I'd heard of CyberKnife too and did some research on the subject. As far as I'm aware, the patient whose treatment was paid for by the PCT had significant cancer growth but it wasn't pancreatic cancer. The treatment was pioneered by Standford in the US and they say that whilst the pancreatic tumours didn't reappear, the patients usually only had a limited benefit because pancreatic cancer is so aggressive and it often spread to other parts of the body. I spoke to Ted's consultant about this and he made some enquiries but on consideration, we decided that it would be an uphill struggle to persuade the PCT and, given that Ted wasn't too keen on the procedure anyway, we wouldn't pursue it.

Yes, Ted's biopsy was via ERCP too. His results also didn't show any malignant cells but the team at our local hospital were sufficiently convinced it was cancer to start treatment anyway. I'm sure you're very angry that the needle biopsy was relied upon and you were convinced that the problem was a cyst on this basis. Have you brought up the subject with the hospital or your consultant?

I hesitate to recommend it but anyone who has grounds for a legal case on the basis of medical negligence has three years from the time they know about the negligence to make a claim. I should warn anyone who intends to pursue a case, though, that it can be stressful and cause a lot of hassle and emotional turmoil. Money can never put something like this right but if you felt inclined to do so, you could contact one of the personal injury case handlers (they often advertise on the TV that they can help those who have accidents etc) who will, at least, tell you whether they believe you have a fighting chance. Alternatively, the Law Society has details of solicitors on their website.

Hope the children enjoyed the party.

Nicki

[Juliana]

Hi Nicki,

I guess like my family, you & your family must be searching for something that will fix this situation....

Since my diagnosis we have been advised by various friends and friends of friends etc the following:

The Bob Beck regime

Dr Hulda Clark (cancer is a parasite school of thought)

Macrobiotic diet

B17 supplement (bitter almonds or apricot kernels)

Something to do with polarasing your food....can't remember the term

Dr William Donald Kelly (metabolic regime using creon enzymes) <--- this one claims to have cured himself of Pancreatic Cancer

*sigh*

As for taking the matter further with regards to how my diagnosis etc was handled, I had thought about it. Last year though I was too weak to pursue it and wanted to reserve all my energy to getting better and loving my children (and hubby of course!). Even now I reflect on whether I should take it further - but I don't want to wear myself out and leave nothing of myself for the kids. So, it's like being stuck between a rock and a hard place. The money would serve to benefit my children - I just don't know if I have the energy to pursue it or on a more realistic note, if I will around long enough to have closure on it.

I often wondered if there was an NHS ombudsman that I could talk to - but again, I never investigated it - especially as I was doing so well - I felt I'd been 'let off lightly' or 'slipped through the net' etc....! One of the specialist nurses said that stress can be a cause of cancer, so I didn't want to put myself in a position to encourage it. Damned if you do, damned if you don't

Kind regards,

Juliana

[Nardobd]

Hi Juliana

Yes, I've been pointed in the direction of a lot of these schools of thought too. The one I hadn't heard of was Dr William Kelly and I Googled him. The website did, at least, make me smile! The other websites that seem to be prolific are those that advertise "what your doctor won't tell you about [insert name of serious illness here]". The answer, of course, is nothing! Any reputable doctor will tell you everything you need to know, if you want to hear it. If in doubt as to whether your doctor is correct, you have a right to a second opinion.

When Ted was first diagnosed he was keen to consider all the options but I firmly told him that we were not running all over the world chasing quack cures! I was (and am) quite happy to do a significant amount of research on any possible treatment, as I did with CyberKnife, but I am not prepared to travel to some far-flung place to chase the BrownGreenBlack potion or similar which offers a cure if you can only find thousands or tens of thousands of pounds.

The other thing, of course, is that patients who participate in such regimes and give anecdotal accounts of a "cure" don't contribute towards clinical trials and it is only by way of clinical trials that a sound and reliable body of evidence can be established as to whether a particular treatment, regime or medication is successful.

I'm glad that you've given thought to the possibility of taking matters further as regards your diagnosis. The last thing I want to do is to throw more into the mix for you! It would take a lot of energy and you would need to get medical reports etc and a number of experts would then comment on the way things were handled. I do know that some of these cases take years to resolve and they can cause considerable emotional stress and turmoil. There is an NHS Commissioner (new name for ombudsman) but they will not usually consider complaints which haven't been through the NHS complaints procedure. There is also a service called ICAS (independent Complaints Advisory Service) which helps patients who have complaints. Again, though, there's a hassle versus benefit argument and you would need to think very carefully about whether it was the right thing for you. At the end of the day, that's all that matters - you and your family.

Turning to the family, I saw your message on Gill's thread where you've mentioned that you haven't told the children about your illness. Quite simply, whatever you decide will be the right thing. As your eldest is very mature he may realise that mummy isn't very well and ask questions, so you and your husband might like to prepare yourselves for that - well as much as you can, anyway. I think you've both done an amazing job so far - I would never have thought of "robot mummy"!

Love

Nicki xx

[Juliana]

Hi Nicki,

I will look into ICAS and see if it's worth talking to them - but yes, I totally agree about the hassle vs family life issue - not sure my family time and current good health (as such) is worth putting on the line.

I may sound like an absolute nutter.....but I am considering the B17 supplement atm. It was originally suggested to me by friends last year, who's father had prostate cancer which was not treatable - and given xxx amount of months to live. He started taking 'Novodalin' and his tumor shrunk to the point where it caused no health issues for him, and so he takes this supplement daily and has not had chemo/radio therapy. I haven't spoken to these friends in a while, so may contact them and see how he's doing and if they still have faith in what they used to fight the cancer.

Last year I wouldn't do it (B17) and I went down the conventional route and I still think at the time it was the best choice for me, you have to try the tried and tested first. However, now that I know it hasn't killed the cancer - my oncologist advised it's chemo to slow the inevitable....this is what I am finding hard to deal with. I don't want to slow the inevitable, I wan't to fight it - beat it. But I don't feel I get that from my oncologist.....yet, they did mention taking cannabis to help with the pain - which is a 'natural' substance

Like I said, I am considering - I haven't decided yet.

http://www.canceractive.com/page.php?n=512

Kind regards,

Juliana

[Nardobd]

Hi Juliana

No, you don't sound like a "nutter". Personal anecdotal evidence is very persuasive although I have done a little research (as I'm sure you have) and I can't see any successful clinical trials have been undertaken. A number of websites also claim that B17 produces cyanide and can be toxic but others say that this isn't correct. At the end of the day, it's each to their own and do let us know how you get on if you decide to proceed.

Speaking of natural substances, Emcee and Elle mentioned in other topics that Omega 3 may help and there are clinical trials which seem to support that claim so I bought some for Ted. You might like to take a look at that conversation: http://www.pancreaticcancer.org.uk/discussion/viewtopic.php?f=3&t=201

Kind regards

Nicki xx