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sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

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

Postby sandraW » Thu May 19, 2016 8:22 am

Hi DG, like I said in my post whatever you decide is right for you, and yes you have been sneaky but good sneaky. I understand exactly where you are coming from, this is an important time for you son and why should he have to carry that extra burden, of worrying about something that is certainly not imminent. I hope he does well in his exams and has a magical summer. take care sandrax xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

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

Postby Dandygal76 » Thu May 19, 2016 3:26 pm

Well, we have just had the letter through from the research company to our GP and the tumour has shrunk by 13%, not the 7% i mentioned previously. It feels better to be on the double figures! I have not heard of many stories of shrinkage to compare it to though. Hopefully it means dad is on the trial drug. Fingers crossed now for the next scan in 5 weeks.

PCUK Nurse Jeni
Posts: 1085
Joined: Mon Jun 14, 2010 1:30 pm

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

Postby PCUK Nurse Jeni » Thu May 19, 2016 4:58 pm

Excellent news Dandygal!

That's such an encouragement.

Jeni.

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

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

Postby Didge » Thu May 19, 2016 6:08 pm

Brilliant news, DG. Long may it continue x

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

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

Postby Proud Wife » Thu May 19, 2016 7:03 pm

YAY! YAY! YAY! lets be having more of that news DG. Really, really pleased for you xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

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

Postby Dandygal76 » Mon May 30, 2016 8:07 am

Okay, I need to admit to being a bit of a numpty here which was probably caused by the sheer terror, desperation and total melt down that occurred around the time of being told my dad was terminal. I think everyone here understands the total collapse that happens around that time - life just turns into a freefall for a while. Anyway, I went with dad to the trial on Wednesday because it was the same day as going to see Professor and when reading through the notes I realised he was not on MM-141 CARRIE trial that we were first informed about but he is on a trial called YOSEMITE which has Demcizamab as the trial drug (hours of research wasted - hahaha!). I still cannot see this on the UK database though and so I do not believe it is widely available in the UK and my understanding is it being offered to 8 patients here. The phase 1b trial increased overall median survival to 12.7 months which seems good in comparison to the norm and with the fact all of the doctors seem to believe that my dad is young (ish), fit and otherwise healthy and so should be on the latter part of the median statistic I am hopeful of good results.

So, we went to see Professor and he was lovely and down to earth and the meeting was good. He took us through dads scan and we established that the 'multiple' lesions on his liver was in fact 3 lesions that are tiny and he believes he will be able to get these fully and with 100% results. He disagrees with the trial measurements of dads tumour and has measured it much smaller than them which was interesting but we have found that a lot via different doctors during this whole process. I think it is an art as well as a science in how they interpret the scans. Anyway, I digress, the end result is that he is eligible for the nano knife as well and Professor has some patients in dads situation who are still going strong 4.5 years later which was brilliant news (especially combined with the fact dad's trial seems to be working for him as well). The cost of the Nanoknife is £13k and the cyberknife to the liver is £9k (in case anyone is interested for their own needs).

As for the bone mets which are tiny I have discovered a bit of an unethical way to get them dealt with and I am afraid I am not one to feel too ethical around beating this horrible disease. Apparently, if you are in pain the NHS has to treat them so I am going to try and convince my dad (and this will be difficult) to say he is in pain so they will blast the mets to the bone. It is useful information to have if you are in the same position, have limited funds and are fighting the NHS as well as fighting for your life.

Professor is publishing a paper in 3 months time and he says he has some interesting results. Hopefully, this might start pushing the NHS to get more proactive, especially with treating people with METs who want the chance to fight! I will put it in my diary to ask his PA in a month or so for the date the paper will be ready and let you all know.

The sun was shining yesterday and dad is on his week off and ate loads at a barbecue we had. The combination made me a very happy lady. I never appreciated such simple things so much in all my life.

DG x

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

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

Postby sandraW » Mon May 30, 2016 10:15 am

Hi DG,
What fabulous news for you all, I don't blame you for feeling unethical, unfortunately you have to fight for what you need on the NHS nowadays. I look forward to Prof Nanoknife's paper with great interest, but the best news is that is your Dad enjoyed yesterday and you did too. love sandrax xx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

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

Postby Proud Wife » Mon May 30, 2016 12:26 pm

Excellent news DG, just excellent, I am smiling widely as I type this message as it's good to hear!

I also had a chuckle at learning he's on a different trial, I am a firm believer in what's meant to be will be and the results are very encouraging.

Can I be a bit of a numpty now and ask for a very brief summary of what makes someone potentially suitable for nanoknife? Would my hubby be a candidate with disease progression and large liver mets? I seem to remember reading somewhere there was a size limit or did I dream that? I have such vivid dreams these days, I truly struggle sometime to distinguish dream from reality! I suppose it's all the worry and stress.

Where was my invite to that BBQ DG ;)

Hope you have an equally nice day today

Much love xxx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

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

Postby Dandygal76 » Mon May 30, 2016 1:46 pm

Hi PW

I would send the scans to Professor (I think you know who it is) and he will tell you straight away. His PA's e-mail address is easily located on the internet or ask the PC nurses. The research I had seen said 5cm and so I was hugely disappointed when dads read at 5.4cm (or something like that) but I sent the scan anyway and the Prof said the measurements were not correct and he was eligible. I am unsure about the size of the liver mets - I have heard of people with many more mets than dads. There is a facebook group called nanoknife warriors and a few people have been to the Professor with no name for mets so if you are on FB I would definitely ask there. You will also be able to get the contact details on there.

When we saw the Prof he said to us that until he sees the scan he does not know, he just knows what will fit. There is no charge for him to look at the scan and state if it is worth a consultation.

xx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

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

Postby Proud Wife » Mon May 30, 2016 3:55 pm

You're a darling, thank you!

You know what, I might just do that! I know hubby's liver mets are quite large, over 7cm as of March I believe but there's no harm is there. I have up to now been happy to go with what hubby's oncologist had to say and then I read stories such as your dads, MSH Mark's and Ruth's all of whom were/are truly inspirational and see that more can possibly be done.

Prof with no name, love it!!!! Yes I do know although I don't do facebook my son does and I will get him to check the warriors out.

Thank you so much xx

PCUK Nurse Dianne
Posts: 286
Joined: Tue Aug 14, 2012 3:29 pm

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

Postby PCUK Nurse Dianne » Thu Jun 02, 2016 9:16 am

Radiotherapy is often used as a treatment to relieve bone pain caused by cancer that has spread into the bone (also known as bony secondaries, bone metastasis or secondary bone cancer.
Radiotherapy is often used to control pain due to bone secondaries for many cancer types and this is of course, also the case for pancreatic cancer that has spread in to the bone.
Bone metastasis can also weaken the bones by damaging healthy bone cells and sometimes can make the bones at more risk of breaking. Radiotherapy, however, can help to make bones stronger and less likely to break. This of course depends on what bones are actually affected in the first instance. Radiotherapy can also treat bones that have fractured.
Radiotherapy for cancer that has spread to bones can also help to prevent new painful areas developing. Having radiotherapy may slow down the cancer and give you a better quality of life for a longer time. However, radiotherapy in this situation won't cure your cancer.
We can all see the benefits of radiotherapy and how it can be beneficial for people who have bone metastasis, especially those who are experiencing pain.
The NHS does offer radiotherapy to people who experience bone pain from radiotherapy. The NHS does not have finite resources and often radiotherapy departments run above and beyond capacity. We are not aware that the NHS ONLY offer radiotherapy to people who experience pain with their bone metastasis, however, this is something that we will look into and the rationale behind any treatment decisions such as this (this may also vary from region to region, depending on capacity of local treating centres?)
However, we do understand the need for patients and loved ones to do their utmost best in researching the best treatment options and providing the best support and information available to make balanced informed decisions about their care and treatment.
We actively encourage people to question the rationale behind treatment decisions, if they wish to do so, to have a questioning mind and to have an open and honest relationship with their treating consultants.
We would openly encourage all patients/carers to be fully open and honest about their medical condition, and about what symptoms that they are experiencing. An effective therapeutic relationship is based on truth and honestly.
We certainly do not advocate people to fabricate the truth about their medical condition, in an attempt to access treatments that they may/may not be eligible for otherwise. This is not in the ethos of the forum community. This may also have detrimental and unforeseen consequences in the future of that persons care. Eg, not able to have radiotherapy at a later point, when it may be more beneficial.

------------------

Advantages (if you are experiencing pain)
 If you are experiencing pain, the radiotherapy may help relieve your symptoms for several months and improve day-to-day life.
 Radiotherapy may also slow down the growth of the cancer in the area that is being treated and help make the bones in that area stronger.
 Radiotherapy works quite quickly and therefore you experience some pain relief within a few weeks (usually).
 You might be able to reduce the dose of any pain-relieving medication that you are taking. This could be useful if they are causing side effects, such as constipation.
Disadvantages
 Radiotherapy, like most treatments, can cause side effects. The risk of side effects depends on which radiotherapy you have, the dose of radiotherapy and where you are having your radiotherapy too.
 Initially, you may actually experience slightly more pain during treatment, and for a few days afterwards. This, however should improve.
 It is possible that the pain may come back after several months. If this happens, you may need further treatment with radiotherapy or other treatments.

Rachel,
Pancreatic Cancer Specialist Nurse,
Pancreatic Cancer UK Support Service

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

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

Postby Dandygal76 » Thu Jun 02, 2016 9:49 am

Thank you Rachel. I do totally understand what you are saying but I can only do what is in the best interests of my dad. He has paid his tax and NI all his life and will not likely even draw his pension for all his efforts. The NHS have not offered him much to be honest and waste horrendous amounts of money - trust me on that because I have audited hospitals. Some people do come back from stage IV cancer and I will use every means at my disposal to give my dad the chance of being one of them. As you have stated, radiotherapy can extend his life and the longer he keeps going the more treatment options will become available. If it was fair world he would not even have this cancer but the NHS treatment of stage IV pancreatic cancer is truly awful. We all know the nanoknife and other treatments extend lives for people with stage IV pancreatic cancer. But NICE is waiting on firm evidence of its safety and proven results? There is no money in the Nanoknife so no one is funding the trials. So everyone without means is reading my thread re my dads treatment and options and they are powerless and it is not right. I know you all advocate very hard for everyone with pancreatic cancer and you do a fantastic job but we all know the service provided by the NHS is inadequate. My dad has had a 13% RECIST reduction with a drug the NHS will only fund in Wales and Scotland - I really am in no mood to see the bigger picture of finite resources. I hope I cause you no offense with this response, I truly do have the greatest respect for all of you.

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

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

Postby Dandygal76 » Thu Jun 02, 2016 12:12 pm

I also should thank you because one of you spoke to my mum the other day about my dad having copious amounts of saliva etc which was making him truly miserable. It is the third time you have come though for us with solutions to ease his suffering. Mum said you were lovely - whoever it was that spoke to her. x

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

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

Postby Dandygal76 » Thu Jun 02, 2016 5:02 pm

Well interestingly the trial drug now stops for a month and everyone just get chemo and then back on it after the month (or placebo). My dad is chit chatting away after chemo yesterday and seems really happy. A whole new man and it is wonderful. I am pretty sure now he is getting the trial drug. I am a bit nervous about the break though because I just want to keep throwing everything at the pesky thing. But I will stop obsessing and try and enjoy the good times. x

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

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

Postby sandraW » Thu Jun 02, 2016 5:20 pm

Hi Dandy,
That's great to hear Dad is feeling chipper, yes listen to your own advice and just enjoy.
As for the discussion with Rachel, different points of view, from different sides but of course both
absolutely correct! take care love sandrax xx