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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Helliemo » Thu Apr 07, 2016 10:22 pm

Hi Ruthus,
I think you should email your CT scans over to prof and go for nanoknife. He can give you a second opinion on the scans and I think he can ablate tumours up to 5cm. It really is worth considering. And sending the scans over just to determine eligibility.
My grandma's cancer had given her a new onset type 2 diabetes. Since the nanoknife her diabetes seems to have gone. She is yet to have a follow up CT scan, but so far she's been amazing.
All the best to you xx

PCUK Nurse Jeni
Posts: 1088
Joined: Mon Jun 14, 2010 1:30 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby PCUK Nurse Jeni » Fri Apr 08, 2016 10:57 am

Hi Ruth,

Good news that your cancer has not spread anywhere.

Regarding the measurements, could be that the tools used for measuring were different? There is a specific criteria which is used in measuring tumour size, and it might be that the original CT was not measured in accordance with this criteria - this can happen.

Also, when it comes to measuring tumours, the response criteria is measured in percentages - so for example, just because something measures slightly bigger, it does not necessarily mean "progression of disease". There is a % margin which things come under when measured to class it as one of the following:

Stable disease, partial response, complete response or progressive disease.

So its all worked out fairly accurately.

Nanoknife is suitable for tumours of 4 cms or less. Yours should be fine even at this stage as its only a tiny fraction over this. Best to get the scans seen post cycle 12 of chemo. As this will be the most accurate and up to date measurement.

Kind regards,

Jeni.
Pancreatic Cancer Specialist Nurse,
Support Team.

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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Fri Apr 08, 2016 10:58 am

Hello PW - I'm not sure the first scan was a contrast scan but I am aware I had dye injected into me for both scans. The stent was placed in after the scan and this may have changed the presentation of the tumor. The doctor told me yesterday that it is very difficult to be precise regarding measurements. However, I was shocked that there was such a difference to what we initially thought the size of tumor to be.

Despite this it does mean the tumor hasn't grown since the first scan. I was disappointed that my case hadn't been discussed in the MDT meeting with the surgeon and other specialists as really want to know what the venous/arterial involvement is. Thanks Hellimos I am keen to pursue nano knife and am going to email my Consultant today to request my recent scans are sent to Dr Leen for assessment.

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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Fri Apr 08, 2016 11:03 am

Hi Jeni

We overlapped responses. I am a little confused regarding when nano knife should be considered as I have read that the combination of nanoknife alongside chemotherapy is thought to be more effective as it allows the chemotherapy to penetrate the tumor better. Would it not be better then for nanoknife to be given mid treatment then? I have just had my 7th chemo cycle and due another 5. I am worried that if I left it the disease could progress in this time making nano knife not an option.

Helliomos - Was your Grandma's tumor inoperable and what size was it? What effects has nano knife had on her tumor?

PCUK Nurse Jeni
Posts: 1088
Joined: Mon Jun 14, 2010 1:30 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby PCUK Nurse Jeni » Fri Apr 08, 2016 11:26 am

Hi Ruth,

It can be done while you are on your primary chemo treatment, or alternatively, see them as two separate treatments, eg:

1. 12 cycles of folfirinox
2. Chemo with Nanoknife - the chemo would be advised by nanoknife practitioner.

A bit like having chemo/radiotherapy - you would complete the main chemo treatment first, then onto the chemo/rad treatment. But, yes, either is possible - so you could have it during the folfirinox.

Nanoknife practitioner can help guiding you regarding best timing.

Jeni.
Pancreatic Cancer Nurse Specialist.
Support Team.

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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Fri Apr 08, 2016 11:36 am

Thanks Jeni - that is very helpful

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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Sat Apr 09, 2016 11:42 am

I have requested my latest CT scan results are sent to Professor for review, so will await outcome. I really feel I need to be proactive whilst there is no indication of spread.I am hoping I will find out nature of arterial involvement over the next week. Thanks for the advice and support.

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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Proud Wife » Sat Apr 09, 2016 11:53 am

Good luck Ruth! What you are saying makes perfect sense. Although I realise now, thanks to Jeni's information, that nanoknife is not an option for my hubby now due to size of mets, I am really interested to hear how you get on. Please keep us posted if you can.

By the way, if you had dye injected both times, then yes, it was a contrast scan. xx

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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Helliemo » Sun Apr 10, 2016 9:48 am

Hi Ruth,
My grandma's tumour was inoperable and 3cm just before ablation. I wish I had arranged an earlier nanoknife appointment because by the time nanoknife went ahead, there were two tumours in her liver.
Chemotherapy had done very little for my gran. But since nanoknife, everything seems to be back to normal. Scan next week, so I'll update when we know more xx

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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Helliemo » Sun Apr 10, 2016 9:53 am

An oncologist told my grandma to drink a teaspoon of bicarbonate of soda dissolved in a glass of water 4 times a day. He showed me the research behind his suggestion and since doing this my grandma has had no indigestion problems. However, not sure if it's down to nanoknife or bicarb. She has also started to gain weight!! Which is amazing. And one more thing, she takes life extension biocurcumin bcm 95. Based on results of another study x

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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Sun Apr 10, 2016 10:57 am

I will definitely keep you posted PW! As soon as I get feedback from the specialist meeting and Prof I will let you know!
Thanks for the information Helliemo. I realised I have spelt your name wrong in previous posts! It appears that if nano knife is appropriate that some people can have very good results without the horrid side effects of chemo. Fingers crossed,.. However don't want to pin hopes on this happening so will just wait and see! It might be if Prof does think nano knife is appropriate he may want me to complete 12 cycles of the fox first. Who knows! One thing with this illness is having to learn to live with uncertainty!!
That is interesting regarding the bicarbonate of soda as a friend has researched this and told me to take it as apparently it makes the gastric system alkaline which cancer cells don't like. I tried it in a juice and not surprisingly it all fizzed up! Ha! I will give it a go with water. I have also read about curcumin and I take 10,000 mg dose each day along with 2 bitter melon capsules, a multivitamin/mineral, garlic capsule, slow release vitamin C and cod liver oil,.. All washed down with a daily juice of spinach, kale, broccoli, berries etc,.. As well as the delicious creons. What a mix! I have no idea if it is that helpful but I think at least it is giving my body good nutrients.

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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Helliemo » Sun Apr 10, 2016 10:20 pm

Amazing! My grandma takes those and more! I'm obsessed! We have an amazing oncologist who looks into all of these things too. Also going to London hospital of integrated medicine on Tuesday to try to find out about all complementary options as chemotherapy has been so dreadful for my gran. I'll let you know of anything promising that comes up.
All the best x

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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Helliemo » Sun Apr 10, 2016 10:28 pm

You sound so healthy, Ruth. You'll beat this thing x

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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Helliemo » Tue Apr 12, 2016 9:56 pm

I took my grandma to the xx hospital of integrated medicine today. She is now doing mistletoe therapy 5 days a week. The doctor said that clinical trials have shown mistletoe to double survival in pancreatic cancer and improve life quality. Your doctor can refer you to the xx hospital in London if you are interested.
We are also now swapping the bicarbonate of soda to alka tabs, supposed to be better for you.
Also trying low dose naltrexone.
Hope this helps xx

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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Wed Apr 13, 2016 10:58 am

That's really interesting! I read the story on this site "Inoperable pancreatic cancer stories" where a lady has had misteltoe therapy. I had never heard of it before. Is it just a one off 5 day treatment and is it on consecutive days or is it a longer treatment. I am just thinking of the logistics of going to London if this was a possibility.

Forgive my ignorance but I'm not sure what Naltrexone is? you are certainly being incredibly proactive and supportive to your Grandma.