Message for Clair & Blue

Thanks, Clair, for sharing your story so far and I'm sorry that Blue's had such a rough ride. Strangely, I had a client called Blue before I was made redundant last year, but he was much younger that Steven and lived in Hampshire so it can't be the same guy.

I certainly understand (as I think all the members here will) the "world falling apart". The frustrations with your GP must only add to the fact that your world has been turned upside down.

I know that weight loss is one of the serious issues with PC, so I do hope that the steroids help Blue to gain back some of the weight he has lost. One of the things I've done for Ted is to visit dieting websites for lists of "10 things you should avoid if you want to lose weight" and then feed him those 10 things. It's all a bit backward but there's some logic in there somewhere (I think!).

Turning to your questions, finding a solicitor may seem a bit daunting when you have to explain all of the facts over and over again. You will have seen the adverts for companies who deal with accident claims and clinical negligence is run under the same umberella - the Civil Procdure Rules. Many of these companies including the two most advertised (National Accident Helpline and Injury Lawyers 4 U) also deal with clinical negligence claims. I can't recommend these firms because I haven't experienced their services myself but would it be worth you contacting one of these types of companies who can then at least get legal opinion(s) for you as to whether you have a case? Whichever company you choose, ensure that you aren't going to be liable for any payments whatsoever - get it in writing if you can. "No Win, no fee" isn't quite the same thing because a solicitor operating a "no win, no fee" claim system may expect you to pay for insurance policies to cover the other side's costs if you lose etc. Make sure that you cover the point and you're happy with the person or company you instruct.

The fact that Lisa's solicitor doesn't practice in your area really isn't a problem - many solicitors take cases from all around the country, so if you feel that Lisa's solicitor might be the best one it's worth a call to see whether he will take on Blue's case.

Like you, I was horrified by the statistics. It's important to remember that they are, as Disraeli said, "Lies, Damned Lies, and Statistics"! Dr Stephen Jay Gould was diagnosed with mesothelioma in 1982 and was devestated to find that the median (average) survival post diagnosis was just 8 months. He was determined that he would survive longer and wrote "The Median isn't the Message", a short essay on the subject. He lived for a further 20 years. I find great hope in that story and I trust you will too.

It is difficult to continually talk to our families about PC - although they are incredibly supportive and will help as much as they can, they can only listen to the same story (or variants of it) so many times and, of course, they are affected by it, as we are albeit not in the same way or, perhaps, so intensely. This forum is so important for exactly that reason - it's a place to question, to vent, to gain and give support and to feel a little less alone. Rant away, waffle away (you'll have noticed that I do!) and make use of the extended network of wonderful people who know just what you're going through.

Love Nicki xx

Dear Nicki

thanks for your reply. I've also responded on the other thread Trevor started but I'll paste an edited version of what I put there, in case you don't see it....

Can you share your experiences, as a newbie this is all strange ground for us. Each week when we go to the hospital, myself and the doctor go through the "i'll ask my questions, then you can ask yours" and he is good, but maybe some of you know things I don't:-

Does anyone know what mean cell haemaglobin means?

I keep seeing on here about CA counts? What are these? They seem to be the way to tell the success of treatment. And when/how are these tested?

Has anyone else experienced foot drop, also know as neuroplasty? Blue developed this in his right leg on 8th July, but spread to his left on 11th July and the lower parts of his legs feel numb, although in the right it seems to be getting higher, just past the knee. It takes a great deal of effort for him to walk and anything on a slope up/down, even a slight gradient is even worse and I worry about the effect on his joints (knee/hip) because of the effort to lift his legs. Its seems from the professionals that this is another sign of PC and happens in PC patients but they are not sure why, if it will get better and so on, so any info would help. His splints have just arrived and he's been over the shop to get a paper, yippee. I reckon I will have to get dressed, to take him to the bookies!!

Anyone using Manuka Honey? We've been given UMF10+ but really there's so much info on the net it all gets confusing, so really what are the benefits of Blue having it?

We are so early on and I don't know if we are getting information overload in the right areas.

thanks a million

Dear Nicki, Trevor, Chris and Ellie

oops, can I add, has anyone had a nerve block? Blue is having one next week by endoscopy

Also Nicki, am I right in thinking Ted was diagnosed in Feb 2009 (been looking thru posts), how many 3-week rounds of GemCap has he had.

Blue is on Telovac trial, but the computer only selected him for the standard GemCap strand.

Thanks

Clair

Hi Clair

I'm sorry you had to duplicate your posts, I just thought that it would be clearer to start a new thread rather than continue on the one started by Trevor - my brain needs all the help it can get these days!

Briefly, Ted was diagnosed very speedily and we then started on the rollercoaster ride which accompanies this illness. His tumour was inoperable and he has now had 6 months of chemotherapy (three weeks on, one week off) and this seems to have stabilised matters *touch wood*, although the tumour remains inoperable and we have only extended the timespan rather than achieved a "cure". Along the way, we've learnt so much and I don't want to bombard you with unnecessary information which might leave you not seeing the wood for the trees so I won't go into detail but if you want more info please ask. For more general information the main PCUK site is great and, of course, the Macmillan/Cancerbackup site has information too.

Turning to your specific questions, Haemaglobin is part of the red blood cells and, as you probably already know, the blood cells can be affected by chemotherapy (although mostly the white cells, I believe) The Cancerbackup website has a page devoted to it (http://www.cancerbackup.org.uk/QAs/AboutcancerQAs/TestsinvestigationsQAs/Bloodtests/related_faqs/QAs/1168) but I'll set out an "executive summary" below so that you don't have to wade through the entirety if you don't want to:

Haemoglobin is the coloured pigment inside red blood cells that carries oxygen round the body. If haemoglobin level starts to fall, the body is very good at compensating for the drop in red cells. The heart will beat faster and more forcefully and the lungs increase the amount of air they move each minute to increase the amount of oxygen they deliver to the blood. The body also gets better at taking up oxygen into the red cells and releasing it where it is needed. when the level drops too low for us, we start to feel tired, breathless and may start to run into problems with too little oxygen getting to important organs like the heart and brain. This can cause palpitations, angina (chest pains), headache or dizzy spells.

CA counts are also known as tumour markers. They measure proteins and other substances in the blood which are raised in people with cancer. There are specific tests for different cancers and the one for the most common type of pancreatic cancer is the CA19-9 test. They are not definitive as to the success of treatment and I know of one person whose CA19-9 test was within normal limits even though they had aggressive PC. Having said that, they are often a good guide as to whether or not treatment is working and most oncologists will include them with the standard blood tests which are taken prior to chemotherapy. Whether, and how often, these tests are done is decided by the oncologist and his team, although you can request that the CA19-9 is included with the tests. I asked for this early in Ted's treatment and we had a CA19-9 request added to most of his request forms.

Ted hasn't experienced neuroplasty but there is a comprehensive article on the Cancerbackup site : http://www.cancerbackup.org.uk/Resourcessupport/Symptomssideeffects/Othersymptomssideeffects/Peripheralneuropathy%0D

An executive summary of that article is a little more difficult but essentially I gather that some tumours can press on a nerve and neuroplasty can result.

Ted isn't using Manuka Honey and I can't find any 'official' endorsement for it. Sorry I couldn't help you there.

As to a nerve block, Ted hasn't actually had one but it was mentioned that he may need one in due course. Cancer Research UK have a page on pain control in pancreatic cancer and a section on nerve blocks: http://www.cancerhelp.org.uk/help/default.asp?page=3132#nerve. It's written in very simple terms and isn't very long so you might want to take a look at that.

Yes, Ted was diagnosed in February but had a monotherapy chemo regime, ie gemcitabine only. He had 6 three-week on, one-week off, cycles and the toxic effects of the chemo were building up by then. He's now not receiving any chemo at all, although I understand it would be possible for him to have a second set of chemo if things start to kick-off again in the future.

Kind regards

Nicki

Hi Nicki

thanks for your reply.....I'll leave u all alone for a while now....my brain needs to rest from everything whirling around in it.

The only reason I asked re mean cell haemaglobin is that when Blue was diagnosed with type 1 diabetes on 2nd June, his level was slightly raised???

Thanks again

Clair

No problem Clair and feel free to ask more questions when you're ready. Hemoglobin is measured in diabetics and can help doctors assess overall blood sugar levels - not on a day to day basis but over a long period.

Kind regards

Nicki

Clair

Hope you are doing OK today. I'm interested in finding out more about "foot drop", amd perhaps providing some info for you.

After Chris's initial diagnosis she began a course of six Gemicitabine chemo treatments. After 3 at 100% she was wiped out. Didn't eat for 4 days, didm't move from settee, had to have blood transfusions,the lot! The oncologist cancelled one week's treatment & reduced to 80% strength for next three. Chris then had 1 week off, CT scans and entered the "3 weeks on, 1 week off" programme. She actually ended up - 2 weeks treatment, next 1 cancelled, 1 week treatment, next 1 cancelled, 1 week treatment, then 1 week break (Chris & I are very keen on holidays, which means a break)

By then, she was operating out of a wheelchair! Her legs had gone, some swelling of ankles and lower leg, whole leg back & front tender to touch. Unable to walk more than ten yards. Are these the same symptoms that Blue suffered?

Her oncologist stopped chemotherapy for four weeks in order for her to get back to some walking, which worked, and Chris has been ok since....but she has only had 1 treatment end of June & 1 in July before the three she has had in August (July due to holiday & 1 cancelled treatmen due to blood test result)

But today she had her third treatment of month (August) and her legs are beginning to get poorly again. Very tender, reddened on the front and feeling very heavy.

So - do these match the "foot drop" of Blue? And for your info, the oncologist put it down to the chemo- not the cancer- and told us 1 in 8 had these leg problems. We will monitor over next few days.

Hope that helps & makes sense as I've been to the pub!

Take care

Trevor

Trevor

thanks for your message.

I think Blue's foot drop may be different to Chris's.

It started on 8th July in his right foot, just felt like he was catching his big toe, like he was tripping. And literally like it sounds, just the foot dropping, so it was in a down position and he couldn't flex his foot up at all. Then on 11th July it started in the other foot, so made appt and went to Dr's on 14th July, which was wen the Dr sent us to the hospital. This was all before diagnosis and chemo treatment.

There was no swelling, he says his lower leg felt numb to touch, you know just different, not right and about half way up his lower legs. There's no redness at all and the Dr at the hospital said they don't know why it happens but it seems to happen in PC patients. There was an intimation that it may be because of pancreas/tumour is pressing on a nerve.

Now, Blue also has pain in his right thigh, starts above the knee, but he says this feels different, not numb but pain, but he is not sure if it is because of all the effort it has taken to walk, because he is using his knees, hips and upper leg to walk. And the last few days he has been rubbing his leg to try and ease it. I did ask him this morning if he wanted me to call the GP (our lovely new one) but he says not.

He has his splints now and seems to like them (I use the word 'like' loosely of course). Beforehand, he was lifting his leg high to walk and visually you could tell he was walking strangely. He couldn't walk for long or fast of course and this meant days at the hospital for chemo (which ends up being all day) were very draining for him, especially having to sit in a chair all day which because of the back pain he doesn't do at home. At home to be honest, he is in bed most of the time and manages ½ hr to 2 hrs downstairs when people visit (just as well we bought a new matress!)

It's early days with the splints (or AFOs as they are called) but already he feels more confident. He says he does and also feels psychologically better because as he says, he knew his walking was funny and also it gives him a bit of his independence back, he ca at least walk over the shop to get a paper and yesterday had 2 bottles of Bud at our local.

We will c how the splints go, hopefully the pain is just muscular from the effort it has taken him to walk but we will be discussing it again on Tuesday wen he goes for his 3rd GemCap chemo.

Busy week next week, chemo Tuesday (cos Bank Holiday Monday), then nerve block on Wednesday and dentist (for assessment only) on thursday (can't remember if I said that wen the steroids kicked in last Friday, he broke his tooth on a crumpet!!!

I've pasted some links to pics of the splints

http://www.chaneco.co.uk/products.php?product_id=545

http://www.footorthotics.co.uk/products/bodymedics/afos/swedish-afo-product.html

I'll let you know what the doctor says next week.

Also re holidays, Blue bought AdTrader, wants to buy a carvanette/motor home so that wen he is not having chemo we can go on our travels.....so now I've got to learn to drive one of those haha (and to think he's spent the last few years laughing his head off when Top Gear have trashed them!!)

TTFN, have a good weekend.

Clair

Dear All

sorry not been in touch, been offline whilst changing broadband supplier.

So just a quick update....

Blue has his nerve block but unfortunately it didn't work. They said it would take 1-2 weeks to notice so after two weeks and after speaking with consultant he dropped his MST back to 90 mg twice a day, but after 3 days he was in terrible pain so it has been put back up to 120 mg twice a day.

He has been putting on weight like no one's business. At his lowest was 8st 6lbs (after losing 3 or more stones in under 3 months, weight was normally 11½-12 stones). He's been putting on 3+ pounds per week and last week put on 5½ pounds, now weighing in at 9st 10½lbs - yippee. I'm not surprised, he is eating like a horse and on Thursday at a friends devoured 3 fresh cream cakes.....this from a man who did like sweet foods!!!

He has dropped his steriod (which was used to stimulate his appetite) to 2mg per day.

Also, because MST causing twitching, and this always and only happens at night just as he is falling asleep, the doctor prescribed Amitriptyline 10mg at night. I was concerned first of all because it is an anti-depressent but the doctor says this is a low dose and it is not being used for that with Blue, it helps to stop the twitching and so far it has. We had a few days where he spent the night going to the loo and at first I thought it seemed a bit pointless if it stops the twitching but wakes him to pee, but that seems to have settled down.

Blue is now on week 6 (I don't know how you say it - he has had 3 weeks chemo, 1 week off and then another 2 weeks chemo, this Monday will be the 3rd again) and it all seems positive, he feels so much better, it will just be the CT scan on 8th October when we will be filled with dread, to see what effect the chemo has had on the tumours.

Oh and we had an appointment at genetics, because of all the previous family history with cancer and good news, it is not genetic. Blue was worried about this because he has two sons....so yeah just bad luck.

We are meant to be going to Blue's cousins today and she has just text us to say her son and daughter have colds and now we don't know what to do, because we are in the second week (although approaching the end)....I may have to ring the hospital for advice.

Still looking for a solicitor, but will look again now back online.

And there I go, I said a quick update and waffled on.

So how is everyone else?

Best Wishes

Clair

Hi Clair and thanks for the update. Strangely I was wondering how Blue was getting on just a couple of days ago, so it's nice to get such a positive update from you. I'm glad to hear that Blue's putting on weight - that's a very positive sign.

The first scan during chemo is terrifying but we were told that if Ted was feeling well in himself and seemed to be improving then the scan would probably reflect that and that proved to be the case. Let's hope it's the same with Blue.

Whilst Ted was on chemo we were probably slightly paranoid about infection - I even stopped our daughter and grandchiidren visiting if they had colds. It was probably a bit OTT but it was one of the few aspects of our lives I felt we could control. What did you do in the end?

Ted's ok thanks. He's finished chemo now and relishing the freedom. Apart from a cold, he's feeling relatively well so we're just hoping that the chemo has done its job. Our next appointment is at the end of November, which will make it three months after finishing chemo. We're concentrating on spending quality time together and enjoying each others company.

Kind regards

Nicki

Dear All

thanks for your responses. Still being a PC newbie sometimes I find it hard to read these pages and I know I have lots of questions (the Drs know that too) and I apologise now if they appear stupid.

Blue is ok. Had a mild chest infection last week (tail end of week 3) and had antibiotics. Seems ok now, but to be honest still has a flemy cough and I don't know what to do. We both seem to be coughing and I think we probably pass it between each other, but I worry about constantly asking Blue if he is ok, I'm sure he gets fed up of it, but I also know he has a high pain threshold (which I wish he didn't.....he's never been the stereotypical man exagerrate illness).

We also couldn't go to his cousins for dinner, Mac Nurse said 'no' especially where it was kids with colds.

Went to Brighton last week to Brighton Breeze - the camper van festival, you can really see how people can get into that kind of stuff and I know if we get a camper van, we will be the same haha.

GOOD NEWSFLASH - Blue has managed to move both his ankles slightly, very slightly, still needs his splints but this is very positive.

Has CT scan yesteday, (8th Oct) so now nervously waiting for results, which the doctor said they hope by Monday when the next chemo session is. This is the first CT scan starting chemo (well the 2nd then, the 1st was the one that turned our world upside down).

This week has been up and down for me....today one of Blue's friends asked him if he was going to die, I found this really upsetting and muttered something about things changing all the time and research and about being positive but really I was and am thinking I don't want him to. When we got home I said to Blue that his friend upset me and that he aint going no where and he sanswered that he is. I don't want this realist, I want a positive husband, don't get me wrong he is posititve, well he's not negative and he is fighting, he's just laid back. Oh well that's enough of that, I'm getting upset now and I've gotta pull myself together

NOW FOR STUPID QUESTIONS

So when is PC awareness week? What are people doing for it? Does anyone know any more, how we can get involved, etc?

Nicki, you say Ted is not having chemo at the moment, is that what happens then? We were kind of under the impression that it was 3 weeks on, 1 week off forever, especially as PC cannot be cured just controlled.

And I was thinking of asking about this CA19=9 count thing, do you think I should? Do the blood tests always include this test? Is a true indicator? How should I word my question?

I was thinking of asking, already got it wrote down, that if the cancer goes from the liver, would Blue then be suitable for surgery

I'm gonna sign off now. I spologise for my rants, waffling and stupid questions, I still feel very much in the dark, not by Blue's oncologist, he is great, but just generally with PC, I do want to read and don't want to read about it, you know sometimes it's information overload. But I like reading all your posts and you are a great support to me.

Any good books out there? Reading Cancer Positive at the moment

TTFN

Clair (n Blue of course)

Hi Clair

sounds up and down for you at present

Pancreatic Cancer Awareness Week is 16-22nd Nov

you can see more details on http://www.pancreaticcancer.org.uk/PancreaticcancerAwarenessWeek2009.htm

Hi Clair and it's good to hear from you again. Ted and I have the cough/cold yo-yo too at the moment. Are you keeping an eye on Blue's temperature? We were told that if Ted felt really unwell or his temperature went above 38 whilst he was on the chemo he should go to the hospital. So pleased to hear Blue has movement in his ankles, no matter how slight, that's really positive news.

Yes the first CT scan after starting chemo is really scary. I think that's because we, as lay(wo)men, think of it as the first real acid test which will show us whether the chemo is working. However, at the clinic we were told that it is only one indicator amongst all the others including tumour markers and general health. Still, there's nothing like a picture and I think it is very important for peace of mind.

I'm sorry you've found this week tough and that the comment from Blue's friend upset you. Optimism, tinged with realism is the best solution I've come up with for comments like that, so I might say "yes, but not until he's finished all the model boats I've bought him" - if Ted manages that, he'll still be going strong at 100! He loves making models and I've bought him a stash including a model of the new Queen Mary 2 which is nearly 4 foot long.

As for your questions, please don't ever think they're stupid - there's no such thing as a stupid question and if you're wondering you can bet someone else is too! Sue's already answered you about the PC awareness week and it would be great if as many people as possible could get involved.

There's no hard and fast rule as to the length of chemo treatment. It will depend on the drug, the consultant and Blue's health. We were told that generally gemcitabine is given for six months because the side-effects are cumulative. It's all a balancing act and the consultant will know when the side-effects outweigh the benefits of treatment. It is, though, a question you should ask on Monday if you can. I must admit that after six months we were pleased, if a little apprehensive, that the chemo was over because we'd really had enough by then. The gemcitabine had stablised his tumour and that will continue for a time (no one knows how long). Ted will now have three-monthly checkups. If necessary, he may be able to have "second-line therapy" which is another set of chemo but with a different drug.

Not all of the blood tests will routinely include the CA19-9 test. At our hospital it was normally included once a month so that the consultant had more information when we saw him. However, I always asked for it to be done and for the results the following week. It's not always a true indicator, for example I've seen a member of the forum write that his tumour markers were within the 'normal' range throughout. However, if you can compare the results over a period of time then it should be a reasonable indicator. If you do want to ask the consultant, I suggest that you phrase the question simply, eg "I've seen people on the internet talking about a CA19-9 test, does Blue have this test and can you explain it to me please?". This should elicit an explanation and, hopefully, information about Blue's test results.

I asked about surgery after chemo and was told that Ted's status was unlikely to change because his tumour was wrapped around essential arteries and veins. Each person is different and different consultants have different views, so do ask the question on Monday.

If you have any other questions, ask away. We all cope in different ways and mine is to learn about PC and the treatments. I don't claim to know everything or to have medical knowledge but I have read comprehensively and if I can help others by sharing that information then I'm happy to do so.

Good luck for Monday!

Nicki

Dear All

just to let you know that we went for chemo on Monday and the results of the CT scan. All was not good and to be honest I feel like SH*T, I don't want to be without Blue, I love him and we've only been married almost two years, if this site wasn't moderated I'd b F-ing and blinding like nothing.

The tumour in the pancreas has stayed the same but the one in the liver that was 2.5 cm is now 4.2 cm. So chemo has been stopped. The doctor said that there is another treatment they can offer, but that they cannot offer it at Addenbrookes (Cambridge) and it would either be at London or Leicester. We were told no more than that. The doctor is very good and likes us to go away and think before he answers any questions.

He said that they are having a meeting on Monday to discuss Blue's case and we have an appointment on Tuesday at 2:20 pm.

We don't know anything about the treatment and I wonder, does the meeting have to agree what Blue's doctor wants to offer???

So yeah, this week is crap, another waiting game, how I stopped myself from going to our ex-GP's surgery I don't know, I was all set to go down there and create hell, the only thing that stopped me was getting arrested, not that I care about getting arrested, I would have certainly made it worth any charge given to me, but because if I get arrested there I'm no help to Blue am i

Also no luck in finding a solicitor, nature of the cancer, time taken to diagnose not long (only because we persisted and got lucky with a thorough locum), so I'm going to get some advice about making a formal complaint to the PCT, GMC, whoever....that GP has to be reprimanded in some way.

I will also be doing some research this week about other treatments - any suggestions would be welcome (sometimes the net is a minefield and you get information overload)

Obviously I didn't ask if Blue could have echinneacea, does anyone know if he can? We are trying to stop this cogh-cold thing between us, Blue has has another round of antibiotics at the moment, as heis is more flemmy 9sorry for the descriptions)

Clair

Hi Claire,

Sorry to hear about the results of the scan......it just doesn't make sense when one tumor stays the same and another one grows.

I have no idea how old Blue is, and what his general health is like not taking into account the cancer and chemo. Echinacea is a natural product and I know it's good for the immune system so I can't see why he couldn't take it. I have taken it, but not for many years. During my chemo I took Co-enzyme Q10, Acidopholis, and Omega 3 & 6. My children come home from school with coughs and colds, my husband is a teacher and often catches a cold - I kiss them every day regardless of the snot - and have been fine (tempting fate now!).

Have you tried an anti-histamine just to help with the mucus production? That might help.

As for trials and other chemo treatments I have read so many things on the net that have 'promising' results it can drive you nuts. There have been a couple of posts discussing some things in the media lately, maybe they are worth writing down and taking to your next meeting.

Here is one:

http://www.timesonline.co.uk/tol/news/science/article6862304.ece

As for alternative - I myself am looking into B17 or Novodalin. I have bought some Apricot Kernels but they are not bitter, and apparently its the bitter ones that have this particular vitamin. Friends of mine by this product for their Father who has/had prostate cancer - and it worked for him in reducing his tumor and not needing surgery.

I am awaiting a CT scan to see if chemo has worked 2nd time around but the general consensus before starting the cycle was not very optimistic.

I've been married 8yrs, and feel that is far too short a time for us too.....2yrs is just cruel.

Thinking of you both,

Juliana

Oh Clair, I'm so sorry that the news wasn't good. I did do a little digging on the internet for treatments which were only available in Leicester and London but there are too many to be certain which one Blue's doctor has in mind. I have to say, that would drive me to distraction - if there's information I need to know now, now, now. Still, I guess the doctor has his reasons and they may relate to the meeting on Monday. When Ted was first diagnosed, we were kept waiting until after a similar meeting to find out what the treatment plan was. The meeting is known as an MDT (multi-disciplinary team) meeting and is attended by a number of different departments from within the hospital including medical oncology, surgery, radiologists, specialist clinicians, specialist nurses etc. They all look at the scan results and discuss the patient and a recommended route forward is agreed upon.

So, whilst the meeting doesn't need to "approve" the treatment Blue's doctor is suggesting, they will look at all the options. In a way, that's a good thing because one of the team may have another suggestion or have read some recent research which would benefit Blue. In all likelihood, they will agree with Blue's doctor that this other treatment should be given but it's in Blue's interest for them to have a brainstorming session!

I've recently posted about a couple of treatments which appear to be promising. The problem of information overload is huge and you can end up not seeing the wood for the trees. What I try to do, therefore, is restrict myself to a set time for research each day. It's so easy to get carried away and then all the information gets blurred and the time is wasted.

In relation to Juliana's post relating to B17, I've been told that you cannot buy bitter appricot kernels in the UK. I'm told that often websites purporting to sell these are sending out "fakes" and not to waste money in this way. (It seems very strange to be talking about "fake" kernels/stones of appricots!).

Clair, I'm sending my love and strength your way. You're providing Blue with fabulous support but don't forget that you need release too - look after yourself.

Nicki x

Juliana, just a quick note.

I looked into bitter apricot kernels and found them in a small health food shop. The label said "may cause nausea", so that stopped me buying them until I'd looked into things a bit more, as I didn't want to give my husband any extra problems on top of the chemo symptoms.

I'm glad I did. BBC Watchdog had a web page which states that these kernels contain cynanide and the dosage recommended to be taken of the kernels sold at one particular health food chain (Julian Graves) was actually dangerous!! They were successful in getting them taken off the shelf.

Not trying to scare you, just make you aware of what I found out myself.

Ellie

x

Hi Ellie,

Thanks for the heads up - I had read all of that stuff already

I too bought mine from a health shop, but the majority are not bitter - and it's the bitterness that has the vitamin B17. I am on my 2nd pack and only eat maybe 5 a day, and have not experienced any issues - however all of them may taste normal, so I am guessing they are not doing their job.

The cyanide part is a worry, and that is what put me off last year from trying them - I just couldn't entertain something that may cause even more problems on top of the chemo itself.

I found this site quite helpful:

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

" In a cancer cell one of these enzymes, glucosidase, is present at 3000 times the level found in normal, healthy cells. Glucosidase has a unique action with B-17, breaking it down into hydrogen cyanide (which kills it) and benzaldehyde, (an analgesic). However, in normal cells where glucosidase is virtually non-existent, a completely different enzyme, rhodenase which is involved in the normal oxygen burning process, actually renders the B-17 harmless, converting it to thiocyanate, a substance which helps the body regulate blood pressure, and vitamin B-12. So, the proponents argue, B-17 is a seek and destroy missile. "

It also gives info on other 'normal' foods that contain nitrilosides or beta-cyanogenetic glucosides:

* barley, buckwheat, maize, millet

* blackberries, currants, cassava, cranberries, gooseberries

* loganberries, quince, raspberries, strawberries, yams

* brown rice, fava beans, lentils and many pulses like kidney beans, lima beans and field beans

* flax seed, linseed

* pecans, macadamia nuts, cashews, walnuts

* watercress, sweet potato

* almonds and the seeds of lemons, limes, cherries, apples, apricots, prunes, plums and pears.

The whole site is extremely interesting. It was set up by a man who lost his daughter to cancer. This page gives his reasons for setting up the charity and he sounds a bit like Nicki in the way he thoroughly investigates everything and anything that is promoted as a treatment or cure.

http://www.canceractive.com/page.php?n=2

The way I see it, chemo makes you nauseous and that's one of it's less dangerous side-effects - it makes Cyanide look like a walk in the park.......lol.

If the oncologists have nothing else to offer me except chemo drugs that have worse side effects like permanent deafness and nerve damage (which is what they discussed at my last meeting) then I wouldn't have to look into such extreme alternatives. If I cannot obtain the proper Apricot Kernels I will consider purchasing the synthetic version Laetrile, which is what friends of mine help treat their Father with for prostate cancer.

All I know is I am a desperate woman and would try anything (as long as it isn't too bizarre like licking toads.....although I may even do that on my deathbed - just incase) that would help prolong my time here with my children.

Love -

Juliana x

Hi Juliana

I understand what you are saying. I think I did also read that the chemicals in the bitter kernels react differently to cancer cells, so it may be that the cyanide doesn't have the same effect as we would expect.

Would you like me to find out the brand name of the bitter kernels I found? The lady in the shop said I could go to the manufacturers web site if I wanted to read up on them, so maybe you could find a link to order them from there. They were definitely bitter, I know that for certain (well, it said so on the box, not that I actually tasted them!).

Love

Ellie

x

Hi Ellie,

Yes that would be great as the ones I am eating are definately lacking the bitterness, and maybe 1 out of the packet may be bitter if that!

Thanks x

Dreading tomorrow

Clair

I hope the appointment isn't as bad as you fear, and that some positives come out of it for you and Blue.

Juliana x

Will be thinking of you both and hoping the meeting is more positive than you fear.

Nicki x

Dear All

not sure how I feel really, so will tell you what happened yesterday....

After standing around sweating for ages, called into the clinic.

Not only was Blue's doctor there but also the Professor above him (who we have met before). Chemo is starting again on Monday. What they have said that Blue's CT scan showed that one of the tumours in the liver had gone from 2.5 to 4.2 cm, however they said his last blood test showed his tumour markers CA19-9 were at 167, whereas at the start of treatment they were over 1000.

Their explanation is that as Blue's very first CT scan was done when he was in hospital on 17th July but treatment didn't start until a month later on 17th August, so they are wondering if between the first CT scan in July and the start of treatment the tumour grew, either to larger than it was and has shrunk or to the size it is now and stayed stable.

They are suggesting another 4 week cycle (3 on, 1 off) of GemCap, possibly even 2 cycles and another CT scan after the first cycle, along with continuing to look at the tumour marker counts in the blood tests.

They have said that if it doesn't work any other treatment offered would be at London or Leicester and would be experimental, so it is more about the drug than the person.

I feel 50:50, is this good news. At first I felt like it was but you know we are on a rollercoaster for this next month. Blue already has had trouble sleeping since the CT scan, I know it's gonna be even harder for him, he was up at 3am this morning and didn't go back to sleep. He has tried to keep himself awake today to see if it helps tonight. I don't know what he thinks about me being able to sleep but I know that's because I am not only a day-dreamer (always lots of thought crashing through my mind) but I'm also a dreamer, lots of dreams that make me upset and uneasy.

Is this really last chance saloon?

My mum asked today if we were upset that the doctors had stopped chemo and started it again and that basically Blue has missed out on two weeks of chemo. I don't know really and Blue being the realist he is, instead of optimistic hasn't really said much about it. He has just said another round of chemo isn't going to make a difference to if he can try those experimental treatments. To be honest, I don't know what's really going through his mind. Last week when we didn't know what if any treatment was on the cards, he tried to talk to me about funerals and if I wanted to stay in Suffolk or move back to London 'afterwards'. I refused to take part in the conversation and just said I couldn't look that far ahead, only saying that whatever I decided to do would be with the dicussion with his son (also Blue) who lives with us.

What other treatments are there out there for advanced (stage 4) PC with liver mets? Anyone know?

Any advice for sleeping? Got hot chocolate and Horlicks to try tonight.

Anyone know where I can get Sparkie's beeswax cream? Meant to be good for cracked heels (as Blue has with the leg splints). The Mac Nurse suggested beeswax cream and would you believe it Burts Bees footcream does not have beeswax in it?!?!?!?

Starting to waffle now, so signing off (and almost tablet dishing-out time), but I really appreciate any info on other treatment people are having for their PC or have been offered or know about.

Is anyone buying xmas pressies? Do you feel strange doing so, I feel really weird and to be honest it really doesn't feel important, I normally love Christmas and love the shopping, go absolutely mad, can't this year because now we are both obviously not working....but honestly I feel like I can't be bothered and I'm only doing it for others and for Blue, which is also strange, cos he never did any of the xmas shopping, not even the food, he did the cooking of course and bought my pressie but I did all the rest.

Lastly, sorry waffle on overdrive, any ideas for a 2nd wedding anniversary pressie would be good, it's cotton.

Night

Clair

Hi Claire,

Read your post. Sounds like the oncologist is giving Blue the benefit of the doubt with regards to the liver met. I would see this direction as more on the positive end of the scale, even if it is because they are 'unsure' of how the tumor is behaving. His other tumor shrunk right? And his CA19-9 has improved, so another 4-8 weeks of chemo is worth a try and then rescan.

As for the wedding anniversary, what about picking your favourite photo of you and Blue and having it printed onto canvas (canvas = fabric = cotton?!) there are many companies online that do it, or your local Prontaprint - even Tesco do it. You would need to scan your photo or have one already on the computer/cd rom.

I'm doing Christmas The way I see it, it could be my last so I'm bloody well going to enjoy it! Plus - shopping is an AMAZING distraction for me, even though we are a 1 income family with 3 kids....I don't go stupid - the word 'clearance' is my best friend

Hang in there -

Juliana x