Mum of 42 recently diagnosed inoperable PC

[Didge]

I think you can administer mistletoe injections yourself. It is an ongoing therapy as far as I can remember x

[MSH]

Helliemo, I think you should provide some more evidence for some of the claims you are making. If I understand you your grandma is now off chemotherapy and only taking complementary treatment. It might well be that this is the most appropriate course for her, but the majority of people afflicted with this disease benefit from chemotherapy which has been proven in carefully run trials.

To take some of your recent suggestions. The nanoknife will not help diabetes nor indigestion. Bicarbonate of Soda on the other hand has been used as a remedy for a very long time. It simply neutralises the acid produced by the stomach. The mistletoe trial which doubled the life expectancy hasn't been replicated, and although I haven't seen the published trial the survival data looks to be very low. A more balanced opinion is probably given below.

http://www.cancer.gov/about-cancer/treatment/cam/hp/mistletoe-pdq

The effects of Curcumin are more mixed but calling it life extending would seem to be going too far.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3535097/

[Helliemo]

Hi MSH,

I'm really only repeating claims from the doctors we've come into contact with.

I was told that my grandma's tumour was the most likely cause for her indigestion and sudden onset of diabetes. Since nanoknife, her blood sugar reading have never been over 10 and she has halved her metformin dose. Her indigestion has also stopped since nanoknife. I don't know how it has happened but we are thrilled and can only assume it is from the ablation? Her two oncologists are sharing this assumption.

The bicarbonate of soda has now been replaced by alka tabs as recommended by *.

I don't know anything about mistletoe therapy other than what the oncologist and * doctor have said. I haven't researched the trials because I assumed that the doctors would tell us the most accurate information they have.

Curcumin has been recommended repeatedly to us, I have a PDF file of a trial that a nurse emailed me, perhaps I could send it to you somehow? I'm not sure how to put it on here?

Yes, my grandma is off all conventional medication now. But we are arranging a consultation with professor so who knows what's next! (I will of course update with any new suggestions that arise from professor)

[Helliemo]

The mistletoe is given in a liquid form. We collected the prescription as we left the hospital and will return in 2months. My grandma takes 8dropsin themorning and 12 at night Monday to Friday.

There is the option of doing injections yourself at home.

It seems fantastic from what I've heard, I really really hope it helps my grandma keep a good quality of life.

The Prof and xxx have recommended meeting prof xxx, so I will arrange it asap

[MSH]

Thank you for your response, and I would like to emphasise that I am in favour of complementary medication and have taken some for a number of years now. It is though very important that such treatments are used alongside conventional medication as appropriate, as your doctors have advised. Doctors are the same as other people and hold a range of views. Those working in RLHIM which I see was formerly the Royal Homeopathic Hospital are likely to have a certain bias. The claim that mistletoe doubles the survival time in pancreatic cancer would put it on par with Folfirinox, something very few oncologists would assert.

[PCUK Nurse Chris]

Thank you Helliemo for posting updates on the treatment and care of your grandma. We are always glad to hear positive stories from our forum members.

To echo the words of MSH we would advise anyone using or considering using any form of complimentary or alternative therapy to look at the evidence behind it carefully. How the evidence is interpreted can also determine the claims that are being made about it. Any therapy that is proven to improve somebodies quality of life or symptoms or lengthens lifespan is to be commended. However if this therapy comes at a financial, emotional or physical cost to the patient or loved one then it should be weighed up as to whether the treatment is worth undergoing.

With regards to naltrexone it is a medication used to reverse the effects of opioid analgesics and is primarily used to prevent relapse in opioid ex-addicts. Low dose naltrexone (LDN) has been used to treat some symptoms in a range of conditions including multiple sclerosis, AIDS, cancer, and auto immune diseases such as arthritis and lupus. Although a review of evidence suggests that there are some anecdotal reports of successful treatment of symptoms there is inadequate data to support or refute the use of LDN.

Chris

Nurse specialist

Support team

Pancreatic Cancer UK

[Ant11]

Hi Ruthus, I forgot to ask how things are going for you? If you want to contact me privatley, you can always ask the support nurses for my email address. Keep fighting Love Annette xxxx

[Ruthus]

Just a quick update as I haven't posted for a while. I had my 8th round of Folfirnox on Monday so am feeling tired and groggy at the moment. I don't take the steroids and so seem to be very tired for a few days after treatment but then pick up again.

My dose of Folfirinox has been slightly reduced as my neutrophils have not been recovering in time to have two weekly cycles. The Consultant is keen I have the remaining 4 treatments at 2 weekly cycles.

My mid treatment scan showed no disease progression so this is positive. It still remains inoperable though due to partial contact with my SMA artery. I have requested that my upto date results are sent to Prof in London with regards to the nano knife and also to the xxx in Germany with regards to surgery. These were sent on Monday and I will await contact from them.

The NHS plan is to continue with Folfirnox until I have had 12 sessions, then rescan, then a months break before chemoradiotherapy.

In between my chemotherapy sessions I have been feeling very well on the second and third weeks (as I have had last two at three weekly intervals). We have been to Spain and I have been cycling, walking and doing a small amount of running.

Thank you for your offer of contacting you Annette. I may well do this over the next few weeks. I am delighted Oliver finished the London marathon in such a good time and raised a great amount of money for PC UK.

Love to you all

Ruth xx

[sandraW]

Hi Ruth,

Glad to hear you are still doing your cycling and walking in between treatments, and you have been managing okay without the steroids, Trevor as I said before never had any and the nurses used to marvel at how well he did without them, its just those initial few days it was always day 7 for Trevor he just used to keep falling asleep.

It looks as though you have got your path planned well with Professor and xxx too, a couple of people on here went to Germany for surgery.

I sincerely hope you continue to do well, I am sure your positivity helps, take care love sandra x

[WifeampMum]

Thanks for your update Ruth and I'm so pleased to hear that there's been no progression since your last scan. If in my reading I come across anything new about treating SMA involvement I'll pass it on straight away. The HPB surgeons in the top UK hospitals seem to be getting pretty adept at treating venous involvement and hopefully some are not far off perfecting arterial surgery. But Heidelberg does seem to be at the forefront in Europe.

Wishing you well!

W&M xx

[Ruthus]

We had a wonderful time last week in Spain. We stayed in a lovely little town called Osuna which was ideal for day trips. We went to Seville, Ronda and Cordoba for the day. The weather was beautiful.

I felt really well last week and I tend to feel good the second week following chemo. I have heard from Professor at The xxx today and I am suitable for nanoknife! I have a consultation this Thursday at 10 a.m. I had my 9th Folfirinox yesterday so feel tired today but uplifted at news regarding the nanoknife.

I have also heard from the xxx in Germany who have sent my reports to the radiographer yesterday and they said they will be in touch as soon as they can be. I am not too hopeful about surgery being an option but feel really pleased that at least I have an option with nano knife.

I wish you all well

Ruthus

[WifeampMum]

So pleased to hear that you can be nanoknifed! W&M xx

[PCUK Nurse Jeni]

Excellent news Ruth!!!!

Jeni.

[Proud Wife]

Ruth, you are doing amazingly well. I'm really, really chuffed for you. You never know what Heidleberg might say and as Mark has just said, we can but hope and hope we will.

Good luck for your appointment tomorrow xx

[MSH]

Sounds as if you're doing really well with the Folfirinox, 9 cycles is pretty tough. Excellent though that you are able to enjoy your time as well. I was in Spain last summer and have wonderful memories of Toledo and Madrid's art. Hope all goes well tomorrow.

Mark

[PCUK Nurse Jeni]

Best wishes today for your nanoknife appointment, Ruth.

Jeni.

[Didge]

Hope today goes well x

[Ruthus]

Thanks for the good luck messages. I had a very positive consultation with the Professor (edited by moderator). I will update in more detail later when I have wifi.

Ruth

[Ruthus]

We are back from London and the consultation with Professor (edited by moderator). I have to say it was a very smooth process. I went with my daughter. We booked train tickets for Wednesday evening as it was £40 return coming back last night, whereas it would have been £300 if we had gone at commuter time yesterday morning. We managed to get a hotel for £80 which was ideal. It was just off Kensington gardens and about a 15 min tube journey to Baker Street. The Hospital is very easy to find, just a few minutes walk from Baker St underground and in a very nice area. After the consultation we went to Regents park and then had some time in Covent Garden. The sun was shining and it was a lovely day.

We were very impressed with Professor . He was very professional, knowledgeable and also had a nice manner. He made us feel at ease and relaxed. He told us he had looked at my scans over the weekend and he measured the tumour to be small at 2 cm's. This has confused us as we were originally told it was 2cm in November when I was first diagnosed, but when the specialist cancer hospital I am being seen at measured both my starting scan and mid treatment scan at start of April they said it was 3-4 cm on both! We pointed out to them that we were informed it was 2cm in November but they remarked their measuring equipment is probably more reliable but now Prof has measured it at 2cm's we are unsure!! I would much rather hope it is 2 cms!

Prof told us he could see no spread of disease and it was locally advanced. I have to admit I've had some pangs of anxiety since as worked out its 7 weeks since I had my mid treatment scan and have had thoughts of 'what if it's changed'. However my tumour markers are reduced from 390 to 50 so I'm taking this as a positive. He told me I looked very healthy(Of course I know this is no guarantee of outcomes but was nice to hear).

He has completed 120 pancreatic cancer Nanoknife treatments so far and repeated 6. He said a paper is due to come out regarding outcomes. Although not a cure he mentioned statistics of 27 month median survival. He also mentioned new therapies and trials particularly immunotherapy which may show promise.

He also mentioned "know your tumour" profiling which I had actually heard about in America but he told me that this is also being done privately in the UK and I could request my tissue sample is looked at. This is to determine whether there maybe better targeted treatments. He mentioned for example that some drugs used for breast cancer or other cancers maybe effective for PC.

There has been such a lot happening the past few days as the day after I had heard from London I also had an email from the Heidleberg in Germany re second opinion for surgery. We have read that Germany may have a look, and operate when deemed inoperable in other countries. We are flying to Germany on Monday night for a Tuesday Consultation and possibly tests/scans. I discussed this with my NHS Consultant and Prof today. Both have said its good to explore all options. However after discussion with both and my own research I am unsure whether outcomes are that good.

I will ask Germany what the chances of having an RO resection if they felt they could operate. Apparently this gives you best chances of longer remission. If they state R1, this has poorer outlook. I think I have read stats along the lines of 16 month median survival after the whipple (again this could be incorrect). I know that reoccurance is common around 12 months after the whipple. Although at the start of this journey I felt an operation would be the only chance of a prolonged survival I am now questioning this taking into consideration the trauma of surgery, the possibility of complications, recovery from surgery. I am aware that if someone is deemed operable in the UK this is the best option to remove the tumor but in more complex cases like mine with arterial/venous involvement I am uncertain.

Bearing all of this in mind at this current moment in time Nanoknife sounds far more appealing. However I will see what Germany says. I'm feeling anxious though as need to act quickly. Prof advised on Nanoknife ASAP if this is what we choose. He also said it works better whilst having chemo as theory is it can help chemo get into tumour. As I've just had my 9/12 Folfirinox it only leaves 3 more.

I will update after my Consultation in Germany on Tuesday.

Ruth x

[Didge]

Ruth this all sounds good although I appreciate your concerns Re surgery although that is still the only way considered possible for cure as far as,i know. If you can afford it I would definitely get the 'know your tumour' profile done. I have have heard of cases, like Prof (edited by moderator) says, where breast cancer chemo has been effective for cases with the right kind of tumour, but yes in America. Good luck with Germany! X

[sandraW]

Hi Ruth,

Wow Ruth that all sounds so positive , it must be difficult to know which decision to make as you say, but perhaps when you hear the results from Germany it will make it easier for you. Its great to hear the the professor thinks you look so well too, and the news about the reduction in tumour markers is also great, look forward to hearing about Germany. Take care sandrax x

[boa]

So pleased to hear this hopeful news. The 'know your tumour' sounds a good idea as Didge says. Good luck with everything.

[WifeampMum]

Ruth, such great news from you on so many fronts - wonderful!!!

All the best for Germany on Tuesday but it sounds like you already have a very good option available with the Prof. His nano knife median survival statistic is v impressive and encouraging.

W&M xx

Edited May 13, 2016 by Wife&Mum

[PCUK Nurse Dianne]

Dear Ruth,

Thanks for your great post about your potential options and I am sure this is helpful for other forum users too. I trust you do not mind that I have edited the Professor's name out of the posts around this, as it is important that we remember to protect and respect these health professionals on the forum (as in our guidelines).

I wanted to add some comments about surgical outcomes that you have mentioned, really for information of others and any new forum users. Surgery is considered the gold standard for successful removal and treatment of the pancreatic tumour, as we know. For those patients who have an R1 resection +/- positive lymph node involvement, adjuvant (meaning post surgery) chemotherapy is indicated and also may improve outcomes for these patients.

Median survival post Whipple's - I do feel this deserves an explanation of what 'median' actually means, as we are aware that there are many people who use the Support Services who are way past this figure of 16 months. Of course it is important that we aim to keep a sense of hope and inspiration for people affected by this disease as much as is possible. We also do appreciate this is not the situation for many people and sympathise with and consider those who use the forum either as patients or carers who are not in this fortunate situation.

In the context of Whipple's operation, median is the average of many statistics. For example if you are reviewing 500 cases of patients who have had the Whipple's operation, there will be variances of survival, some patients may have limited survival of months (and their demise may not be necessarily due to progressive/recurrent disease, it may be a side effect of disease or other complication) whilst other patients may have statistical survival of 5+ years. The median is all of these statistics added together and the 'middle ground' obtained.

From a perspective of statistics; we are frequently asked about these on our support line services, and will often explain to people that they are numbers, and not always truly reflective of individual circumstances. We often hear from individual patients who are told that statistically they may have a certain prognosis (determined on their individual condition) and they will far outlive that 'statistic'.

I feel your approach is sensible Ruth in that you are seeking expert opinions from several other sources and specialties and this is to be encouraged. No two patients are alike and it is important for everyone to have the capacity to speak to experts who are able to review your individual case and provide information so that you are making an informed decision.

You are also very sensible in taking the approach of considering the best options for yourself, as you highlight yours is complex situation and worth considering all options.

Safe trip to Germany and we look forward to an update. May I thank you also in honestly sharing your experience and giving others the awareness of treatment options.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK Support Team

[Ruthus]

Thank you all for your lovely messages of support and thank you Dianne for the response. Thanks for editing the Professors name. I am usually very careful about not mentioning health professionals names but as his name had been mentioned a few times on the forum I had overlooked this. Apologies!

Also thankyou for being concise regarding what median survival means and statistics. I have read stories where people have outlived the statistics and personally I do not like to focus on statistics as believe everyone is an individual and no one, not even the Consultants can tell someone how long they will survive. When I was initially asked whether I wanted a prognosis my response was no.

I also appreciate that surgery is the gold standard first option. I was referring to my own personal case when considering the possible outcome of surgery for myself when compared to nano knife.

Hope is so important. There are hopefully positive treatments and changes to come to treat this disease.

I will update once I have had the consultation in Germany.

Ruth x