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Hobbs
Posts: 9
Joined: Sun Apr 17, 2016 4:27 pm

Failed Whipples - What are my options?

Postby Hobbs » Sun May 15, 2016 9:55 am

Hello,

For anyone keeping a track on my situation, here is a brief summary.

My 73 year old mother, having been diagnosed with Pancreatic cancer in March 2016, was admitted on Friday 13th May for a Whipples.

During the Whipples procedure, they found the cancer had gone to the liver. They said that the CT scan did not pick up on this, and it would not have shown on a CT scan. They said it was common to find such occurrences during the Whipple Procedure.

Now we are looking for alternative treatments.

I suppose Nanoknife is now out of the question? They said the tumour had increased now to 4CM (avg).

What else can we do? Of course the obvious question is what about chemotherapy?? My mother was absolutely fighting fit in preparation for the Whipple's procedure. Now she's taken a bit of a beating, and they say she'll need 3 to 6 weeks to recover ; so Chemotherapy isn't even going to be an option for the immediate future.

I need an option for the immediate future that is therefore, targeted, less abrasive than Chemo and can be administered non invasively.

Here's what I've come up with (in order of preference), and I'd like to know what you think:

a) Immunotherapy - new trial going on at Cambridge/Marsden.
b) Cyberknife
c) Radiotherapy
d) Nanoknife (if its still possible??!)
z) Chemotherapy.

In parallel, Gersons diet? What do you think? I think the nurses here are against it, but what about a diet high in alkaline and full of anti-oxidants? [- and I stress: in parallel).

What options would you recommend?

Are there any other trials that I should know of?

Is Cyberknife a good non invasive option for removing the tumour? Now she has had an incision for the failed whipples, do you think that Nanoknife is no longer an option?

I'm desperate for advice.

So far, she has received ZERO treatment for her condition. It has been 6 months wasted full of needless biopsies.

Many thanks for any information you can share in this difficult time for everyone involved.

My sincere love to you all,
Hobbs

sandraW
Posts: 1027
Joined: Thu Oct 31, 2013 5:38 pm

Re: Failed Whipples - What are my options?

Postby sandraW » Sun May 15, 2016 10:42 am

Hobs, The fact that your Mum could not have surgery must have been a tremendous blow for you all, but
your Mum definitely will need time to recover before she can have treatment, I truly understand how frustrating this must be for you, but chemotherapy, especially those used to slow progression of this horrendous disease, is such a gruelling treatment she will need to be fit to undertake it.
You have looked into all the other options, and I'm sorry I can't give any advice on those, I am sure others will be able to give you more advice, but I do think that the most important thing at the moment is to get mum eating properly to build up her strength so that she is as fit as possible for what ever treatment you decide on going forward, take care and let us know how mum is doing sandrax

boa
Posts: 128
Joined: Thu Jul 09, 2015 12:13 pm

Re: Failed Whipples - What are my options?

Postby boa » Sun May 15, 2016 10:48 am

I am sorry to hear what has happened and the Whipple could not be done. I can't offer advice as every patient is different. As Sandra says you need to be very fit to undertake chemotherapy. My experience is that this is a tough cancer and the medical staff will always do their best to help but at times delays seem frustrating. I hope your Mum builds up her strength quickly. Catherine

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

Re: Failed Whipples - What are my options?

Postby Didge » Sun May 15, 2016 2:31 pm

Hi Hobbs, sorry that your mother did not get her Whipples. Yes, it is very common that it goes to the liver. Immunotherapy is much in the forefront of trials at the moment so no harm in investigating this - whether your mother would be eligible is the first and then what the trial actually involves - whether it is treatment v placebo or whether it is treatment 1 v treatment 2, that sort of thing. I have already posted my thoughts on Gerson - I do have a lot of knowledge about it and it may play a part in keeping a person in remission but I have never found a case where it has cured a person with advanced or metastatic pancreatic cancer, despite what they might say. I did contact the Hungary centre and spoke to a very nice woman who said they had had one pc patient with advanced cancer and he had been doing very well for 2 years before he died of other causes - but he may have had a less aggressive tumour, we simply don't know! Also it is very very tough so I would not recommend it. There are more gently dietary changes you could make - it is personal choice. If you look at Trace on the website he used dietary changes in his lifestyle but I haven't actually looked at the link. Nanoknife - get in touch with the Prof in London - just google it if you don't know who he is - but we all do! No harm done in getting his opinion. There are a couple of NHS places too now although I don't know how well they are doing. I don't imagine they will use radiotherapy. chemo - well that is a personal choice - it will be regarded as palliative not curative - wouldn't be my choice but then I'm not the patient! In the end it's your mother's choice. Did they take a biopsy in the op? If so you may know how aggressive it is. Sorry you've had such a setback but do let us know if there is anything we can help with - I well remember not knowing which way to turn - it's agonising! x

Proud Wife
Posts: 723
Joined: Sun Jan 17, 2016 9:28 am

Re: Failed Whipples - What are my options?

Postby Proud Wife » Sun May 15, 2016 7:08 pm

Hello Hobbs

I can't answer any of your questions but I didn't want to ignore your post. I am just so very sorry to hear that your mum had a failed whipples operation. It must have been such a shock to hear of the metastatic disease.

I hope and pray your mum quickly gains her strength back so that she can have treatment.

Stay strong xx

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

Re: Failed Whipples - What are my options?

Postby Wife&Mum » Mon May 16, 2016 8:29 am

Hi Hobbs
I too am very sorry to hear about your Mum's failed Whipple and wish her a speedy recovery. My responses are based on my understanding of treatments from countless hours of Internet research since my husband's diagnosis one year ago. I stress that I have no medical qualifications!

a) Immunotherapy - new trial going on at Cambridge/Marsden.
As others have suggested, you can contact the trial people to find out more.

b) Cyberknife
I've not seen any claims that this is a cure. In fact I've seen hardly anything published about this treatment, its success rate or availability in the Uk. Which leads me to think that in this country it's still very experimental for PC. But I could be wrong.

c) Radiotherapy
I'd be surprised if your Mum would be eligible straight after her Whipple. In the UK I believe it's usually done after first line chemo where the cancer hasn't spread.

d) Nanoknife
If you can afford to go privately, speak to the Prof to find out if Mum is eligible.

z) Chemotherapy
Here now I'm speaking from experience as my husband had a failed Whipple one year ago. His situation was very different from your Mum's in that his disease hadn't spread beyond his pancreas. But around 5 weeks after the op (which was extensive as he had a 'palliative double bypass') he began Folfirinox chemo which shrank the tumour. This was followed by chemo-radiation which further shrank the tumour. As a result of these treatments in Feb this year he was able to have a successful Whipple.
Clearly your Mum has cancer in her liver which poses extra challenges, but chemo in some cases can be very effective in controlling - or even better - shrinking the cancer, and therefore buying time.

Wishing you and your Mum all the very best
W&M

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

Re: Failed Whipples - What are my options?

Postby Ruthus » Mon May 16, 2016 11:54 am

Dear Hobbs

I am very sorry to read about your situation. I can only reiterate what has been suggested to you. I think it maybe worth contacting the Professor in London as I am aware of people who have had liver ablations. However I am not sure whether this has been done only when the primary tumour has been removed or whether it can be done in the first instance before any further treatment for the primary tumour. You will be advised whether this is possible.

W&M - would you mind sharing the link with me with regards to the immunotherapy trial currently being run at Cambidge/Marsden. I don't seem to be able to find it.

All the best
Ruth x

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

Re: Failed Whipples - What are my options?

Postby Wife&Mum » Mon May 16, 2016 2:45 pm

Ruth, sorry I can't provide any further info about the Cambridge immuno trial - I was just repeating the info that Hobbs gave in his post at the top of this thread.

Hobbs - please can you assist with this?

W&M xx

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Failed Whipples - What are my options?

Postby Dandygal76 » Tue May 17, 2016 10:29 pm

Hey Hobbs. See professor at the Princess Grace hospital. My dad is going - nano knife on the pancreas tumor and cyber and nanoknife for Liver mets. Never give up... some people come back from stage 4.. google the success stories. It is a long shot but until you are told otherwise, keep thinking your mum will be the lucky one. All my love. x

Hobbs
Posts: 9
Joined: Sun Apr 17, 2016 4:27 pm

Re: Failed Whipples - What are my options?

Postby Hobbs » Wed May 18, 2016 3:35 am

Hello everyone

Thank you so much for your responses.

I've read all your replies, but as I have limited internet access and I'm in my cellphone, it will be hard for me to reply in detail or specifically to anyone.

For the trials at Marsden or Cambridge, I will post the links later. That's for Ruth who asked that, I think?

To Dandygal: yes we are planning on doing the nanoknife. My mother's tumour has not increased in size. I think this is a good sign.

What I don't understand is why everyone is upset at the whipples failing: even if it succeeded , is it any guarantee that there are no secondaries?

Are there any scans that can find cancer cells or lesions that are less than 1cm?

What worries me the most is that we are in May 2016, and no treatment yet has been given to my mother since the diagnosis in March.

My heart is breaking.

We are all torn here. I can imagine how you all must feel also for your loved ones.

My heart goes out to all of you.

My father is old and is 82 years old with epilepsy. My mother used to care for him. This is a hard situation. He can hardly walk either.

The nurses here are just a godsend. They are actually better than the doctors we've been seeing who have totally incoherent with their advice.

Anyway, can someone here tell me how many nanoknife sessions one needs? I was hoping that if there was any recurrence, we could use the cyber Knife at the royal Marsden which is available on the NHS anyway. Or am I wrong?

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

Re: Failed Whipples - What are my options?

Postby Didge » Wed May 18, 2016 10:25 am

Hobbs, I don't know how many nanoknife treatments are usual, but I thought just one or maybe two? Have you rung the Prof? I would have thought that would be the first thing to do, unless you know that you can't go down that route. Yes the Royal Marsden do offer cyber knife and other ablation techniques on the NHS. No there is no scan that can detect minute tumour spread, that is what is so difficult with this cancer - PET scans can, I believe, show more than CT scans. But the reason why spread can be undetectable is why vigilance is needed. But first things first. Has your mother made any decisions or been offered treatment? Let us know how we can help. Didge x

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Failed Whipples - What are my options?

Postby Dandygal76 » Wed May 18, 2016 5:21 pm

Hi Hobbs. If you are looking for alternatives I would recommend starting with this book...

https://www.amazon.co.uk/Anticancer-New ... 0718156846

It is written by someone who had cancer and is in the medical profession and it has been one of the most useful I have read (and trust me I have read many many cancer books!). The Gerson diet I think can affect quality of life with such a strict routine and to be honest, once she starts chemo you may just find you feel eternally grateful that you mum manages to eat anything at all. Protein consumption will become important to keep body mass (she may be a lucky one where she does not get sick with chemo). It is quite easy to become obsessed by things like food but I am a genuine believer in supplements - I suffer from neuropathy and was written off by the medical profession but I went a long way to heal myself with well researched supplements.

I think we all learn quickly that what we want to do for them and what is actually practical does become difficult to marry up. And, for us, each chemo session seems to be different in side effects... it drives me nuts. One moment dad likes something to eat and the follow week it will be a big no.

We also suffered the frustration of no chemo for 2 months whilst the NHS procrastinated. We ended up going to Professor {name removed - moderator} in XXXX Street who got dad on the current trial. We went from the NHS giving him 6 months to hopefully potentially years now. They treat him like they will beat it and my dads wants that. His tumour has also shrunk which is not often the case so we are feeling lucky at the moment.

I know the PC nurses will not like me giving up a name again but these are 2 professors that are willing and open with their contact details on the net and I want to give you the info so much (forgive me PC nurses!). I googled for Professor {name removed - moderator} e-mail address... e-mailed him and he responded within 5 minutes even though he was at an international cancer conference in the USA. His PA is great as well. My GP reached out to his medical colleagues from all time when dad was diagnosed and the response was run to Professor as fast we could and that is exactly what we did.

There are some interesting things out there and right now I feel hopeful for the future... but I have seen this beast can turn on you quickly so I am not complacent.

I have also recently joined Nanoknife Warriors on facebook... they are a good source of info. Perhaps I will see you on there!

DG

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

Re: Failed Whipples - What are my options?

Postby Didge » Wed May 18, 2016 9:41 pm

Great info DG although I have to add that the doc who wrote the book in your link has since died from a recurrence of his brain tumour but I like his book as everything is backed up with research results.

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Failed Whipples - What are my options?

Postby Dandygal76 » Wed May 18, 2016 10:20 pm

Oh Didge that is quite sad. The man who wrote 'the ride of my life' also succumbed. But there are interesting statistics surrounding them both... they were survivors and we have to hold out hope for new stuff to come. In a particular chapter of Anti Cancer a man with stage IV pancreatic cancer lived for a few years based on some of his theories. We have to think outside of the box with this stuff but as I have said, I have learnt the practicalities does not make that easy. Someone said on here to me when I first joined... as long as they are not losing weight etc then they are happy. I didn't get it. I do now. x

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

Re: Failed Whipples - What are my options?

Postby Didge » Thu May 19, 2016 7:37 am

Spot on, DG, put any crap in your body as long as it's calorie laden so the weight can be maintained for as long as possible! This is a relentless battle and mostly the ones I have come across have researched night and day and pushed and pushed constantly to get the best treatments and timely! Unfortunately, I had to let go quite early as my partner liked to bury his head in the sand and pretend all was well when he felt ok - and I can understand why he did that! But it did mean that he was willing to be reassured when he had niggling doubts and it was hard for me to go along with it! x