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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Didge » Wed Apr 13, 2016 5:54 pm

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

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby MSH » Wed Apr 13, 2016 8:51 pm

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/trea ... tletoe-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
Posts: 24
Joined: Fri Dec 18, 2015 11:46 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Helliemo » Wed Apr 13, 2016 11:37 pm

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The bicarbonate of soda has now been replaced by alka tabs as recommended by RLHIM.
I don't know anything about mistletoe therapy other than what the oncologist and RLHIM 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 stebbings so who knows what's next! (I will of course update with any new suggestions that arise from professor stebbings)

Helliemo
Posts: 24
Joined: Fri Dec 18, 2015 11:46 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Helliemo » Wed Apr 13, 2016 11:55 pm

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.
Prof leen and RLHIM have recommended meeting prof stebbing, so I will arrange it asap

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby MSH » Thu Apr 14, 2016 6:52 am

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
Posts: 17
Joined: Wed Jan 14, 2015 4:03 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby PCUK Nurse Chris » Thu Apr 14, 2016 1:32 pm

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
Posts: 125
Joined: Sun Dec 01, 2013 8:43 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ant11 » Mon Apr 25, 2016 10:14 pm

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
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Wed Apr 27, 2016 1:27 pm

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 Leen in London with regards to the nano knife and also to the Heidleberg 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
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby sandraW » Thu Apr 28, 2016 11:20 am

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 Leen and Heidleberg 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 sandrax

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Wife&Mum » Thu Apr 28, 2016 12:05 pm

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
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Tue May 10, 2016 6:38 pm

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 Leen at The Princess Grace 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 Heidleberg 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 atleast I have an option with nano knife.

I wish you all well
Ruthus

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Wife&Mum » Wed May 11, 2016 10:03 am

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

PCUK Nurse Jeni
Posts: 1075
Joined: Mon Jun 14, 2010 1:30 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby PCUK Nurse Jeni » Wed May 11, 2016 11:38 am

Excellent news Ruth!!!!

Jeni.

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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Proud Wife » Wed May 11, 2016 6:01 pm

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
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby MSH » Wed May 11, 2016 8:07 pm

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