Thank you and our story... but we are not that far yet!

Hi all,

I wanted to take a little more time to say thank you for all of your help and advice on the treatment forum. Sorry I could not do it straight away but I have two children and one goes to school 30 miles away and wants constant lifts to see his girlfriend over that way as well, I have an 8 year old in childcare and I work full time and study. Plus my obsessive researching does not leave much time for other things. I relied on my dad far too much I realised now.

I am humbled by your stories that I have read and I am sure you have seen many people like me come on here thinking that not only can they conquer the world but even more impressive than that, they can conquer pancreatic cancer (or make it so their dad can). I am sure you have been there, done it and got a million t-shirts on the matter.

Unfortunately, I am the hamster on that wheel now and you have to go through the whole thing again with me so please be patient. At the moment I cannot help myself. I am not ready to give up one bit of my soul to this thing. I hope that does not change too soon. I also hope I am not disrespectful to all of you that have done this or have lost love ones to this fight.

My dad has become very ill with the chemo and it has shocked him. He cannot eat a morsel and it is a huge worry. He just feels sick all the time. Last week he had chemo on the wed and was ill mainly Friday, Saturday and half of Sunday. He has been ill since Wednesday night this time and it is getting worse so I am hoping he will have some reprieve before the next one on Wednesday. He has just changed nausea drugs but dad is worried about complaining because he wants to remain on the trial.

As I have mentioned, I am chasing every and any (legitimate) possibility and I have several questions that may or may not get answered. All I can do in exchange is promise that once I am a veteran at this I will remember the kindness for the unfortunate newbies to come and give back what I asked. So..... questions.... (even if you can only answer 1 it will help)....

- Sickness - is it normal to change anti nausea drugs multiple times? Will they say dad is not coping with the trial if he keeps asking or is this normal? I can see there are lots of different medicines out there for this and so I am telling dad to keep communicating and work with them to find a solution. Any experiences?

- what supplements are you using - My dad is on Selenium, Nimbolide, Curcumin, Garlic, Pepper, bitter melon. I have also heard that apricot kernels are good but I have not started this yet. What have you researched and what are you taking and why (if anyone wants my evidence for what my dad is on then I am happy to post). Also, don't worry we are making him take excessive pills... other that Nimbolide (tastes awful) and Garilc (he doesn't like) the rest is shoved in liquid form into a smoothy. My dad is a fussy eater.

- Has anyone tried Iscador (a mistletoe preparation) that is offered to reduce side effect of chemo and there is some research and some anecdotal evidence of its helpfulness? Any experiences?

- Who has been rejected by the Nanoknife and why? My dad has slight mets to his bone and there is some debate as to whether the liver is affected or if it is just a cyst / benign lesion (especially considering my dads tumour is in the tail of the pancreas and the liver is the other side). I am going to try and and get my dad the nanoknife for his tumour (it is only around 2cm) and I see that some do radiofrequency ablation (RFA) of bone metastases so was going to push for that as well. He just wants it cut out... research suggests it probably won't work but we would like the shot (he would like the shot at it). We are going to wait on the next scan from the trial and then send all the new scan data to the best place (probably Hospital where he had his biopsy). Why wouldn't they do this privately? What are your experiences?

- Has anyone heard that PET scans can give wrong readings and are difficult to interpret? Even more reason we want it cut out - just in case??? Only one of my dads lymph nodes is effected from all scans and the EUC and even that is minor.

I have a thousand more questions... but if anyone can help with these I would be very grateful.

L

L,

Please tell your Dad to ask as much as he needs to. They will not take him off the trial for asking questions. This is your Dad's life! Can he give consent for you to be doing all the asking? That is what we did, Dad had lots of questions but didn't want to trouble anyone. I wanted to trouble the world! Please ask. Please don't be afraid to. I think patients in particular are scared to ask, but these people are only humans, the same as us, they are not royalty. I wish I could ask for him.

Leila xx

Thanks Leila, I may try that with him tomorrow and he will defer much to me but can be stubborn as well. He is old school.. he doesn't want to make a fuss. He has already said if I had not gone mental over this he would have settled for the NHS and his fate. It may still be his fate... but it feels better fighting! x

Hi L,

I am sorry I can't help with any of your questions, but I just want to say you are a star!, my husband, Trevor, also had the cancer in the tail of his pancreas, he had surgery, but we knew there was spread to his liver within 4/ 5 months, he lived for a total of 21 months, after diagnosis. He was lucky as he stayed remarkably well through his 21 lots of chemo, he was on 5FU then Folfirinox.

You are doing an amazing job, and I truly hope that it all works for your dad, and he has a good outcome on the trial, take care you seem to have a lot on your plate, sandrax xx

Hi Dandygal, here are my experiences: First, I am not convinced that operations are not suitable for those with metastatic spread particularly when it is in the tail as the op is not so big as the whipples. But I believe ops are generally not considered when there is spread. I just think the body is helped if the bulky primary is gone and the surgery can be got over with minimal problems. Secondly did a biopsy determine that it is an adenocarcinoma, the most common type? Because sometimes in the tail of the pancreas, the tumour is more likely to be a neuroendocrine or islet cell tumour which is slower? As far as legal alternatives, we tried apricot kernals, DCA, curcumin and ginger, barley grass powder and various vitamins. My partner would not take much alternative stuff as he was not really into it and stopped completely towards the end. There are two people on the forum who have got past 3 years who have added some alternatives to the mix - whether it has made any difference, who knows? I can tell you that for adenocarcinoma I have found not one person who has lived doing just alternatives (not to say it is not a rational decision, to turn down what is palliative chemo for regimes which are more gentle on the body - just that it has not saved their lives). And that is from 2 years of almost constant research. I do however, think that getting tumour analysis is worth it - it may only be available in America though. And even if the results are interesting, it doesn't mean there will be any available treatment, but it is a start to know what you are dealing with. I completely understand that you are going for the cure, when you are told there is none. At the very least, pursuing treatments which ARE now available will give your dad the best chance, because this disease will get the upper hand whenever it has a chance. so keep going and one of these days people will start surviving with new approaches and the longer you can keep going the more likely it is that you will be one of them! We did not have the option of nanoknife as we could not afford private treatments but it does give you more options and hopefully quicker appointments! Good luck xx

I just wanted to add that the side effects of the treatment will not usually make any difference to whether the treatment is continued or not but it is very common for patients to not want to say anything in case they are taken off the treatment, not just trials but regular chemo. In the case of a trial it may be though that if they are too ill to take the trial medication regularly it could mean they are taken off but if it is just controlling symptoms they will continue. Trials don't want to lose people off the trial if they want to continue! Also we did try the radio ablation and that did seem to work for the liver tumour. Also, the fact that your dad may have liver tumours does not have anything to do with the fact that your dad's tumour is in the tail. Liver tumours are metastatic which is why you need a whole body treatment as well as any tumour-targeted treatment. Hope this helps and do ask anything else! x

Hi L,

Nausea and vomiting are a very common side of chemotherapy and can be difficult to control. Your father should keep his doctors informed. If the vomiting is persistent it could lead to biochemical effects much more likely to be prejudicial to the trial continuing.

I take a multivitamin as my tumour and stent interfere with pancreatic function. I have taken bitter melon capsules after seeing an article in the journal carcinogenesis.

http://carcin.oxfordjournals.org/content/early/2013/03/07/carcin.bgt081

I have taken Nigella Sativa after reading this article.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2587125/

and simvastatin after last years ASCO meeting.

http://www.theguardian.com/society/2015/jun/03/statins-could-halve-risk-of-dying-from-cancer-says-major-study

I would avoid taking these around the days of treatment, and have now stopped the last two as my current treatment appears to affect my liver function.

I had my first Nanoknife in January 2014, and was told that whilst it wasn't a cure, it might give me 2 years. This seemed marvellous at the time and I was relieved because I thought my bony mets might preclude treatment. Fortunately professor didn't think they were typical and was prepared to go ahead.

I have not heard of RFA being used on bone. I tried to have mine treated with stereotactic radiotherapy (cyberknife), which seemed to give the best chance of cure.

http://www.ncbi.nlm.nih.gov/pubmed/15450884

Unfortunately the doctors procrastinated and then wanted another PET scan. I had this in April 2014 and was delighted when it was reported as no disease activity. This was a lie as within weeks I began to have symptoms and by the time I went for scans preparatory to cyberknife treatment it had spread too far for this to be used. Luckily I have for the moment responded to conventional radiotherapy. I am now wary of scan reports.

I hope his helps, but in this everyone has an individual course.

Mark

I really appreciate all of your replies. Again, I read them but did not have a chance to reply. I had a lovely response from the charities nurses via my personal e-mail that really was useful. Dad is still struggling with sickness and I am a little annoyed the trial doctors poo pooed our list of supplements and told my dad not to bother. They also said not to do the Nanoknife due to the spread to his liver, hip bone and 1 lymph node. However, I am skeptical of this advice. PET scans can be read incorrectly and they have already said they are not sure about the liver lesion and I would have expected more lymph node involvement.

I agree he needs to stay on the trial to try and get on top of any mets but the moment it grows it needs to be nanoknife. So, yesterday I got the bad news the tumour is 5.7cm and I was devastated. I got Prof to then take a look as scan was done at xx anyway for the trial. He came back and said it is eligible and the measurement is not accurate. This is doing my head in now, the trial has said it involves arteries but when we were going for an operation at xx no one mention arteries... they were going for it until they measured Mets on a PET scan. The mets do not show up at all on MRI.

Every doctor we see has a different angle with this and their own views and prejudice. If I had not been breaking down doors and without some money to open up options this would be even more dire than it is.

On another plus note, the trial drug or placebo is only given every two weeks so no one had anything last week. 1st week dad got dry eyes on top pf other issues, last week none, and today dry eyes again. I am hoping this is a good sign he is not getting the placebo.

I want to thank you for your positive responses to me, they have helped me greatly. The peaks and troughs of emotions are hard to handle. I have decided to buy a puppy to try and inject some positiveness into the house. I feel like a zombie with my poor children. They have lost their mother to this right now, I am a shadow of my former self. I have been thinking about a dog for a couple of years and so the conversations didn't just start with this - I understand the responsibilities.

I really wanted to respond to you all more personally and I am sure I could see your messages last time I wrote an answer... you may get drip fed personal responses tomorrow and from now on I will print them out.

My message to anyone new - this is not a cancer that you sit with one doctor. Break down those doors... second, third, fourth opinion. Even on the NHS you can get a second opinion. Send your stuff to private hospitals and second opinions abroad. There are options to exhaust. I will keep you updated on how we fair - I hope my thread will be a message of hope like MSH. We were told 6 months - let's see how far we get.

Thank you again so much. x

Don't worry about individual responses! We are all here for you whenever you want to post. My partner's tumour was 5cm and in the tail. Unfortunately there were at least 8 lymph nodes involved when he had the operation. I am not sure if you are saying the tumour has grown recently or if you have just found out its size. I think tumours in the tail are often large. Assuming you are not talking about the bone tumours as that would be large for a bone tumour! I also don't understand about the artery involvement - that is more common at the head of the pancreas - I'm not sure if there are any arteries to be involved at the tail! You do put your life on hold when you are in this kind of battle but try to find occasional days or afternoons off when you do something else. Difficult I know! Good luck xx

Hi L,

I've not posted before on your thread but just want to say I totally understand your frustration with the docs. All treatment for my dad stopped just after Christmas, he had had folfirinox and gem/abraxane but neither worked. We were also given different opinions from everyone and now we are going through the same with his GP/Macmillan nurse/Hospice doc. It's difficult to know who to trust/believe ands make the whole thing even more upsetting.

I also just wanted to say I think getting a puppy is a great idea. I've also been thinking about it as I know my little girl would love it and she too has lost her mummy for a little while, while all this goes on. What age are your kids? my little girl is 8 and she knows grampa is sick and is starting to ask more and more questions but I get too upset to tell her too much.

Ali

Okay, apologies again that I do not seem to find the time to make more personal posts, everything just goes in a daze at the moment. I have not even e-mailed a response to the nurses who e-mailed me with advice that really helped me and dad around his sickness. I am though going to do the Great North again and I am sure I will raise thousands for the cause (a very very large family). I am however a bit down over matters. My dad cannot eat, bad bitter taste in his mouth. I have just ordered 3 different chemo eating books from amazon to deal with this. He is losing weight fast. So my next plan is that I have divided 2000 calories by 15. 134 calories every hour as a target and so we devise a plan he knows he needs, probably won't manage the way he is feeling, but empowers him and stops my mum worrying so much. This taste thing is really awful... any advice? In the meantime I google every day 'pancreatic cancer news' and set the search for last 24 hours. T cells and a protein marker - I have e-mailed both research leads. T cells look promising, when the trial reaches the UK my dad will be first through the door (I hope). Anyway, I am doing my rambling thing (it is 1am). Tomorrow, I am tasked to go with my dad for a blood test because he is struggling to walk. My dad is also a man that doesn't make a fuss. I have researched meds for chemo sickness. People are up to 4 in combination, there is a cancer treatment place in America that has their own combo added to the 4 combination. I hear Emend is great but £98 a tablet on the NHS. Dad is currently given a steroid and a tablet he can only take for 4 days (escalating already from lesser effective tablets). My dad is very very sick and I am tasked with being me and coming out with all this to the trial drs tom... sort it out, you are not doing enough, there is more you can do (I will do this on a professional level). The outcome of this is that my dad, who is exhausted, will not appreciate this. It will be the only time I go, he won't let me again... in for penny... Because I am nuts over fighting this I sometimes feel I am the bad guy whilst my sister 'never looks on google because it is so awful and she just takes each day as it comes' In my dads good times he so appreciates what I do and wants to fight but he also gets very bitter when he is ill. How do you get a balance when all I want to do, and am mentally able to do, is fight. I never expected chemo to be this hard, and neither did he, most people with breast cancer etc seem to have it every 3 weeks. My parents also need to go on holiday, how do you do this? Do you just request a break from chemo? My family, especially mum and dad, have no life at all right now. On the plus side, the cancer markers are down but they do not use the Ca ones but measure amylase and lipase. Apparently Ca 19-9 is not reliable so they do not measure it. We are down 33% and nearly into normal for their measurements.

Dandygirl, I really admire your support for your father. Different chemo is used for different types of cancer and, as you know, different people react in different ways. If your parents want to go on holiday simply discuss this with the chemo nurses or oncologist and see what can happen.

May I respectfully make a comment about your eating plan. When my husband was not feeling like eating I was fairly obsessive about trying anything to get him to eat. With hindsight I removed what pleasure there was in eating. Eating even a small amount each hour is a pretty strict regime when your dad is not feeling good. Have you thought about high calorie drinks? You can get them on prescription or get them from the chemist. My husband thought they were OK taste wise and it packs in 500 calories quite easily as they can be sipped over time.

I hope the appointment goes well.

Catherine

Hi Dandy girl,

Have read your post, and I shall respond to you via email directly, as alot to address.

Kind regards,

Jeni.

Pancreatic Cancer Specialist nurse,

Support Team.

Dear Dandygirl

I am very sorry that your father is finding eating so difficult. My husband - who is now doing extremely well - lost loads of weight at one point and I was at my wits end to know how best to help. Like Catherine, we found the supplements a good way to add calories. And for whatever reason, "little and often" just didn't suit him, he was happier sticking to regular mealtimes. It may take some experimentation with different regimes and different foods until you find what works best.

For others who have read your last post and were wondering about the new treatment and research that you mention (T cells and protein marker) here is some further info:

Engineering T cells to treat PC

http://medicalxpress.com/news/2016-04-cells-pancreatic-cancer.html

Protein found to play a key role in the spread of PC to the liver

https://www.sciencedaily.com/releases/2016/04/160418120331.htm

I wish you and your Dad all the best

Wife & Mum

Thank you both - I was feeling rather down last night and looking back on message I did have a bit of a ramble on. Sometimes I just have a moment. My dad is diabetic so the shakes are not really suitable because he is struggling with his blood sugar. He is keen to try the little and often approach because he is finding my mum constantly trying to feed him things a bit overwhelming and trying to constantly graze to keep his weight up is tiresome. He seems to think if he has a target it could work - as in, eat it and then forget about it for 50 mins and then he knows he is getting the calories. Perhaps I could look at 2 hourly. I am open to the fact it may not work - I am dabbling in options. We have just come back from London and the trial have agreed to give him Emend so hopefully that will help him as well. It really can't be nice feeling sick all of the time. His quality of life is really affected at the moment.

You will find the support of Jeni and Di "priceless", they help us more than you can imagine with all the pitfalls, medication and things that really helped. EMEND is the best for sickness too, so hopefully this will help.

Regarding weight loss, Tracy at diagnosis found it really hard to eat and maintain weight. To help this we were prescribed complan and used full fat milk. It really helped and is full of vitamins needed. Maybe give that a try? Good luck and keep battling. Love Annette x

And, thank you Jeni. The e-mail sent to me re dad previously was very helpful. Dad read it and did increase water intake etc and I think because it came from you guys it wasn't viewed as a nag! L

alimc77 - my children are 8 and 16. How are you doing and how is your dad. I am so sorry I did not have the mental capacity to respond before. Other than my little meltdown last night I am so much more level. My mum was so upset yesterday and it just knocked me for six. Did you get a puppy? I am telling my eldest in August it is terminal (I don't want him home alone in school holidays with it). Puppy may follow that. I hope you are okay. x

Thanks Annette. My dad will not tolerate full fat milk, he seems to want tangy - certain fruits, Tizer, frozen yogurt, and rich tea biscuits seem to be the flavour of the day... none particularly good for blood sugar! He is managing to take a multivitiman and carcumin. I also have a lot of supplements in liquid form as he is so anti pill at the moment! we are squirting that and olive oil stealth mode into anything we can. He says the taste / sickness thing is also a mental battle now. He cannot distinguish between whether the taste is sick/nausea or the metallic taste. It all just tatses awful, especially water. If he thinks of a smell he can be sick without being in the vicinity of food or smells. So, stealth mode supplements and calories in the pots and perhaps try some hypnosis is my next thought. He is an East End boy though... I may not convince him of hypnosis! x

Just thought I'd mention that fortijuice can be used instead of fortisips for those who don't like dairy or can't tolerate it. You can also get fortijuice shots which can be taken in one mouthful so if your dad likes fruity that might be one way to help. I understand the fluctuation in blood sugar can be a nightmare but that is fairly common with this as both the disease and the meds can add to the problem. Does he test himself? That is useful for keeping track. xx

Hi Dandygal,

Great to have more information about your dad - actually, what you are describing about particular smells being able to make him feel sick without even being near this, is a good clue.

Hope you got my email from yesterday?

This seems to be what we call "anticipatory nausea" - and its basically that - you can end up getting sick even at the thought, or smell of certain things.

There is a very good medication which is very effective for this type of nausea, and its called LORAZEPAM. Again, its main use is not for this, but by giving smaller doses, it does a very good job at helping anticipatory nausea.

Perhaps dad/yourself could discuss this with his care team? or GP even? It shouldn't be an issue getting this - many, many chemo patients will suffer from anticipatory nausea/vomiting, and so, its a common medication to use in chemo circles.

I hope this helps?

Kind regards,

Jeni,

Pancreatic Cancer Nurse Specialist,

Support Team.

Hi Jeni,

I did not get your e-mail and I have just recovered my deleted and checked and they are not in there either. Could you please resend it to me?

I have given my dad the info above and he is going to discuss it with the trial - thank you so much.

Thanks

Leigha

Hi Didge, he does test himself when he is feeling better in himself, I have ordered some of the fortijuice to see if he can tolerate them - thank you for the suggestion. I will divide by 2 and add to his meal plan, apparently you can freeze them as well and he seems to be better with frozen things. I have ordered some silicon calipo type containers to try and get inventive with this food plan I am doing. So, with protein powders and everything else I have ordered to do this meal plan it has cost an absolute fortune. £6 each just for the fortijuice! Mum is coming round Saturday and we will make it all for a test on Sunday. If it works I will publish it here for others (if they find they have similar taste issues) but I suspect some pots will be rejected immediately and chances are the whole thing will fold by Sunday evening. But, at least we would have tried! x

Hi Dandygal

Can you not get the fortijuice on prescription? My hubby currently very reliant on Ensure (dairy) and we get those prescribed. Keep up the great work, more you cannot do. I think you are doing a brilliant job and you are entitled to have a meltdown once in a while. Of course it must be so awful to see your mum upset. Make sure you find time to take care of yourself too.

The best of luck for your food plan, rooting for you xx

Thanks PW. My mum works at our doctors and being a village doctors I have had the same GP's since childhood. If we can get it on prescription then they will give it to us but I am lining up everything to sort for Sunday and wanted to get it all in ready. My dad also suffers from Asthma since childhood and orange and lemon cordial would always cause a blinking Asthma attack in him for some reason (apparently it is quite common). So I have ordered the blackcurrant one and will test it before and make sure he likes it before I annoy our poor GP's again with my next scheme based on whatever research or idea I have come up with. I am finding I need to pick my battles and my timings with this stuff rather than the previous scattergun approach. The other expense is liquid supplements like Selinium - what on earth makes them so expensive is beyond me. We are also funding things between me, mum and my sister. My sister and I are in reasonably well paid jobs and so we are lucky to have a combined resource but we want to save for other treatments. My dad has been a decent man and saved all his life to top up his pension with interest from his savings and then leave his money to us and the grandkids. He is of that old school saving up to leave his money to us (we don't want his money, we want him!). It is hard to get him to part with his money and he will refuse if it dents too much so we need to build a war chest. We have told him to leave his house to the grandkids and spend the rest on treatment because he has done enough already to make sure me and my sister are okay... but no. He can actually put a price on his life... he said at the start of this 'I will tell the Professor I have about £10k I can put up and see what he can do for that!' Hahahaha! Thank god my mum is still about - ultimately she wears the trousers in that household, hence nanoknife and cyberknife will be taken if he is eligible! £10k indeed! Look at me, I am rambling again! Have a nice evening. x